Here are the latest medical updates/Aquí están las últimas noticias médicas:
**It seems like the right time to end this section of the blog since it´s focus was medical updates & details about our life here of interest to family & close friends. Since Jenna is now gone on to heaven, there is no more need for medical updates! We are so thankful that she no longer suffers but is enjoying the most mind-blowing, unimaginably beautiful experience of life ever after with her King and all who have walked before her. (The Latest: 5 December 2013 - 19 October 2014)
25 Oct 2014 It´s interesting that there seems to be a stirring of things we are hearing about of what God is doing through Jenna´s death. Various stories are trickling in, confirming others and some dreams and visions are also being confirmed. The youth are holding an event to remember Jenna and to consider her legacy to them. Wow. I will try to find ways to consolidate these and share them in some form here on the blog...In the meanwhile, I will post reflections on our process during this time of grieving & pray that it will be of comfort to some others, too. We are so thankful for the continuous outpouring of love & support during these difficult days. We are so thankful for Jenna´s life...
24 Oct 2014 This morning one of the last big medical things is going - the oxygen tank and machine & supplies. Bruce took the wheelchair back to Alfredo last night and except for some smaller things, we are getting back to normal. Dani wants to research all of the natural things we have on hand to see if they can be useful for us...I know a lot of them can but some of the homeopathic things are very specific to Jenna´s case so I am unsure what to save and what to toss at this point.
It has been a challenge to understand each other´s grief process, at least for Bruce. He was grieving deeply since he got back from AZ watching Jenna decline so quickly. He is a doer and so it is natural for him to stay busy - and perhaps to think we all want to be busy & with people, too! It´s been interesting for us to see Dani, so extroverted, be so introverted in her grief and need solitude and quiet so much. It has Bruce worried that she´s been in her room so much but I see that she´s doing lots of art, lots of crying and coming out for hugs and the occasional cup of tea and snack. She finally had lunch with us all today and I am glad to see her coming out more and more.
Jordan has his ups and downs but is certainly not living it like Dani. He prefers to be busy & distracted but when he´s here he often cries as well.
I feel like I haven´t even realized what has happened yet. Am I floating on prayers? Still in shock? Numb & exhausted? It´s not like I haven´t cried but I certainly don´t feel anguished or desperate or even depressed. Sometimes I worry about crashing...when will that happen? What will it look and feel like?
I pray we can learn to communicate better during this, perceive what we need, state it clearly and then respect each other´s ways. Then there´s that fine line as a parent between encouraging & pushing... We´ve never quite done this before & so we´re all hurting and all clueless!
23 Oct 2014 Today they took the bed away and poor Dani was still asleep in it! I had meant to awaken her sooner (she knew they were coming) but they were more punctual than I had expected. She lept out of bed and after it was gone began to reorder the room...blending hers and Jenna´s things and moving some things out. Bruce helped her move out a mattress and move in Jenna´s desk and then Dani spent most of the day working on that with music in the background. Her dear friend Katie came over to be with her for a while in the evening and I was so grateful.
tricia and I worked on the floral wreaths and bouquets a lot of the morning, pulling out the dead carnations in order to save the wreath-frames, rearranging flowers that were still good into new bouquets, pulling out every possible container I had, cutting stems and changing water and I was really happy with the result. The house is starting to recover some normalcy in its looks. I am happy to have another woman around the house, to fill the space, to be a supporting presence.
Jordan came home from school today sad and collapsed into my arms sobbing. Who knows why some days it hits you harder than others? He didn´t want to go to fútbol and decided to take off on his bike. He was gone for several hours and I had to track him down. He had gone straight to his friend David´s house, crying the whole way (he told me this later) and went into their house to talk to his friend and cry together. They are so sweet and David has been a good friend. Then he went to Nathanael´s house and I´m glad that he has people he can turn to and that are of comfort to him.
Bruce and I had a skype call with the Area Directors of our organization who are meeting in South Africa right now. We weren´t able to be with them but we shared with them this morning about the recent events and some of the intimate things that have gone on. What a wonderful group who has cried & prayed with us for months now. Many of them cried with us today; I couldn´t see them but I could hear them. They gathered around the computer there and prayed for us and it did us both so much good to be supported.
Amy asked for tricia´s help in some redecorating at her house so she came over to get her and brought her back around 9:30. Bruce had gone off to pray with Alex and Alfredo who have decided to keep fasting one day a week together although now they no longer have to cry out for Jenna! Tonight they were praying for the ¨sacred trust¨ of Jenna´s legacy here and how to steward and honor that. Such dear men...
22 Oct 2014 These days are kind of a blur and I am writing retroactively but the details all don´t really matter so much. Today I tried to start going through some of the medical stuff that has been occupying so much space at our house and that is not hard to get rid of - I don´t want to remember all of that. I called Cudeca to see when they can come get the meds they left here since they are valuable and dangerous - I don´t want morphine sitting around this house!
I separated some medical things for Lidia our dear nurse friend and divided it up between what the hospital could use (especially all of the paraphanelia related to nutrition) and what could be useful in hospice for Cudeca and the rest that wasn´t usable for others, I tossed. Later on that day, Bruce and I went to the hospital loaded down with IV pole and 2 infusor pumps, 2 boxes of supplies for the Endocrinologist and 2 bags of supplies (unopened & in perfect condition) to the hospital pharmacy.
It was strangely comforting to be at the hospital; everyone we ran into already knew our news and was so sorry with us and for us. There are still so many people I want to thank and say good-bye to there that I´ll go over another time and see who I can find. Everyone was rooting for her and is saddened that this happened to one so young. I thought I wouldn´t want to even see the hospital again...but it was like being in my second home from this year and I know it inside and out now...and so many, many people who have greeted us daily, helped us, pulled for us, done favors for us, blessed us. The hospital community has become one of my circles of friends & acquaintances.
Jordan bravely went to school today and he said it did him good to be distracted. Reme came over to be with Dani and I am so glad for her and Katie to be seeking her out right now.
We had lunch again with Ralph & Joyce and had a lovely time sharing & remembering. They had some good insights & counsel (as always!) and as I look back over the years, I can picture times with them in Argentina, Morocco, the US and Spain. They have walked with us for a long time...and continue to bless us.
Dear tricia has been listening and cleaning and tending the tons of flowers we have here in this house...we had no idea she would be here for this particular time. I want her to feel useful & busy but sometimes I just need to be in my room or with one of the kids...oh how I pray that her sitting with us will be blessed!
21 Oct 2014 The day after. We realized last night at 10:30pm that within 36 hours we had received hundreds of people, had a memorial service and cremated her body. Actually, the cremation was after the service and was going to take 3 hours so we didn´t wait around; Bruce will go back tomorrow morning to get the ashes and later we´ll decide what & where & how we´ll do that. Everything happened so fast that our heads are still spinning...
The kids and I slept in, our bodies heavy with fatigue and grief. Somehow, in spite of not sleeping well through the nights, Bruce was up and out to visit with our dear colleagues who had come from our organization to be present at the funeral and with our team for a few days. My heart was torn with simultaneous emotions of wanting to be with them and wanting to be alone. Of wanting to talk and wanting to be silent. Of needing community and needing solitude all at the same time...
Bruce also had coincidentally his cousin & wife (from California) in Málaga for a business appointment and again, I have felt the same mixture of emotions of wanting to honor them and be with them but needing to be home, to be close to my kids, to be true to my heart. Such dear people but so little strength for me...Steve has been the caretaker of Bruce´s parents will and funds and has done so much for us...yet I felt weak at the prospect of conversing. Bruce, on the other hand, seemed to welcome the distraction and I realized this grief thing was going to look very different for each of us...
My dear Dani was holed up in her room...Jenna´s room...and didn´t emerge all day. Katie came midday and I found them curled up together on the bed in silent Shiva together. Very precious and heartbreaking all at the same time.
20 Oct 2014 Today seems unreal. This morning I was working on a program for tonight's service / just getting together content and Katie and Kory were laying it out and getting it printed. I wrote out what I wanted to read at the service (although earlier I was unsure if I wanted any participation). It all went by fast and before I knew it it was time to get ready for the visiting time. Dani doesn´t want to go at all, so I arranged for Dora to pick her up for the service.
Bruce and Jordan had gone over to the Sala to receive people again at 2pm. I got there at 4pm with tricia, Ted & Claudia. I was so surprised to see Ralph & Joyce from our organization, having just arrived from Colorado just to be by our sides! Wow. They brought tons of hugs & kisses from all the people there. There weren´t too many people when I first arrived but by 4:30 it was like the night before, just so full. I was blown away by the many people who came from all over and many were repeats from the day before. We were busy hugging & kissing and tearfully sharing up until 6pm when we went over to the chapel for the service.
The chapel was full and I don´t know how many were there but there were hundreds. The sound was great up front where we were but later people from the back said it was hard to understand (it´s a big marble chapel with terrible acoustics). Our musicians had brought their own sound (thank you, Ivan!) and did a great job. (Eugenio on keyboards & vocals, Helena on flute & vocals, Dixon on the caja, Craig on acoustic guitar and Daniel on bass. Such an honor to have them do that for us. Nuria joined them later with vocals.) We sang Oceans and 10,000 Reasons and later Nuria sang My Redeemer Lives (all in Spanish). Pastor Cristóbal spoke from Job and did a great job, plus he was our MC. Dora presented a Blessing of Jenna´s Legacy, Amy a Crown of Honor (a vision she had from God for Jenna) and Alex spoke on a Living Hope in Grief. We were only supposed to have an hour in the chapel and it went longer but because it was the last service of the day, they gave grace. Bruce spoke from the Heart of a Father and I spoke on a Severe Mercy. Karima prayed in French & Arabic and Ted closed in Spanish. (We will publish the video ASAP.) I think Jen was really happy...
They traditionally then carry the coffin out and we (the family) went out to the front of the chapel where we were hugged & kissed one more time by hundreds of people. So much love...I was amazed at all the people who returned again a second day to see us including Jordan´s classmates, teachers, director, coach and many other friends and neighbors. We were very surrounded & carried by people´s heartfelt common sadness and love for us.
Story after story surfaced of Jenna´s impact on others and Bruce and I are profoundly grateful, proud and humbled to have had her for our daughter.
That night her body was cremated but because it was going to take 3 hours, Bruce came back the next day for the ashes. We will decide on what to do with that when it seems right. We know she wanted to be sprinkled over her beloved Mediterranean.
Just before leaving, we went to a place to collect all the wreaths of flowers and wow! what a haul! It took Eller´s and our vans to take them all away. Raquel y Tomás took some home and Laura helped distribute some for us to those who had participated in the service or worked on things for us. I was so happy to bless others with these beauties...
We got home exhausted again, ate a light dinner and stumbled to bed. As Bruce & I prayed with the kids, it was so weird to not be praying for Jenna and to only be 4...Oh, how we will miss her! Our hearts are all aching.
19 Oct 2014 Our dear Jenna went to heaven peacefully in her sleep this morning at 10:30. She is with the Good Shepherd who has walked with her faithfully this long road. We are so thankful to you for your deep love for us.
Such a surreal day...Lida and Dani had slept with Jen throughout the night, checking on her, giving her meds when necessary, etc. Bruce peeked in at 8am and Dani had woken up at 8:30 and checked on Jen. Lidia checked at 9:30/45. I woke up and showered and around 10:20 peeked in the room. Both Lida and Dani were sleeping but Jenna wasn´t moving. I first thought maybe her breathing had improved and she was being healed but I made my way around the beds to check. She wasn´t breathing and I searched for a pulse then woke Lidia to confirm. When she confirmed it, I woke Dani then went downstairs to tell Bruce and tricia and Antonio (Lidia´s husband who had also spent the night at our house). We got the beds out of the way and Lidia turned off the oxygen and checked the time: 10:25am. Her head was still warm so it had just happened and she had been peacefully sleeping.
We spent a long time weeping and kissing her and holding her hand, caressing her arms that no longer held us. Dani began to brush out her beautiful hair. She wasn´t there any more....but her body was all we had left of her. We were so glad she had no more pain, that she was with Jesus, that she no longer suffered or struggled to breathe...but oh! how our hearts ached!
We made a few phone calls and our teammates & close friends & pastors were very quickly there. Her Oncologist was going to come visit her & I texted him and he came anyway to kiss her one last time, to give the family his condolences and I know his heart was so hurt at having lost such a dear patient.
Then we did a really crazy thing. We took our faith out to the last possible minute. We called our pastors who had asked us if we were open to having her prayed for after death. They had 3 other people who had faith to pray for her to resurrect so while we had our last moments with Jenna, they were traveling to get to our house quickly. Eugene & Joy, Carolina, Dick & Ginny prayed and sang over her with great faith and Joy filled the room with flute music...I remember hearing My Jesus, I Love Thee....I was having mixed feelings, wanting God to do this great miracle for His fame and believing He could entrust her with it yet not wanting either to delay the inevitable grief or to use these prayers as a sort of ¨Christian denial¨ of what was the obvious, or even what was God´s will. I prayed that any of my doubts would not interfere with anything He might want to do...
After some time, there was a quieting and a stillness and Jenna remained where and how she was. They thanked God for her life and blessed us and slipped out, leaving our family there still gathered around her, touching her, crying off and on. It is a day you never want to see.
The medics came and Lidia gave them paperwork confirming her illness from the Dr. They confirmed her ID and her time of death and filled out some papers and left. Lidia, Dani and I began to take off some off her dressings, tubes, patches, etc. and then we put her in one of her favorite outfits. Then the funeral home men came, quietly, reverently, respectfully. They shook our hands and said we might want to leave the room since they had to put her in a body bag. By this time quite a number of friends had found out and come to the house and were waiting out in our patio. Alex had asked if it was ok to take some petals from the roses in the living room (which had been sent by Justine ¨to make her smile¨). He gave us each some and had given some to those out on the patio. As the man came down with the white body bag, everyone spontaneously began to toss pink rose petals over her as she went by. Some of us were in the living room and saw them come down the stairs and began to strew the petals as she was leaving the house. Others were on the porch and others were outside on the patio in the beautiful sunshine and kept tossing petals in the little journey out to the hearse. Nuria burst into song with her lovely, clear voice in Spanish ¨My Redeemer Lives¨ and a crowd walked out into the street, following her til the last second. I remained on the porch with some others where I could still see the scene - my dear one leaving with petals and praise, tears and love, trust and good-byes. Neighbors were watching and listening. It was a sad and lovely scene, bitter but sweet: death may be common but today there was an uncommon holiness. I wonder what the men who carried her out said to each other as they left. I hope they said, ¨She must have been really special...well loved...and from a family of faith.¨ And they would have been right.
18 Oct 2014 A terrible and beautiful day at the same time. Holy moments, loving moments, piercing moments. Various ones coming to say good-bye, with tears and words of love...heartbreaking & moving. Thanking God for Lidia and her friendship & nursing skills, Alex & Amy and their support, prayers, listening, sitting with us, Dora who came to ¨bless Jenna´s legacy¨, tricia who flew from California to be with us, Laura who is doing airport runs for us, friends who are cooking for us....and in the midst of it all, Jenna´s brave spirit, efforts to respond to us and our both broken & full hearts of love for her and one another. We pray His will, which always reflects His Shepherd´s heart, will be done gently and that it will bless those who are watching...
17 Oct 2014 Our first full day with Jenna at home. She was in some pain last night and we had been to a variety of pharmacies trying to fill prescriptions but no one could have it til the next day. The Oncologist thought that with the sleep med she would be ok but it seemed to make her nauseous and she threw up a few times (like she has strength for that). I even went over to the hospital to meet with the Pain Unit and he gave me another Rx but I couldn´t get that one filled either. I did pick up her nutrition which at this point is mostly to keep her hydrated.
Bruce slept next to Jenna at Alex´s insistence (our friend & counselor) since Dani & I were so exhausted from nights at the hospital. He wasn´t a whole lot better off since he´s still on jet lag! Dani slept with me and Bruce woke us up only when she needed to go to the bathroom. It is really hard to move her & she can´t help much. She spent mot of the day sleeping and didn´t have any longer times of being alert and all of us talking.
Around 11am a Dr. and nurse from Cudeca came and that was great. We got all the meds sorted out and changed the ones that seemed to make her nauseous. They had lots of stuff on hand and got everything organized for her to be as comfortable as possible. Lidia was here as well and knew the nurse. She has been an angel! She ended up being with us a lot of the day, going to the pharmacy, the orthopedic store and training mostly Dani in all the meds. The medical team from Cudeca is great but it´s pretty barebones; if it weren´t for Lidia, I don´t know how we would have made it. She is even spending the night with us - right at Jenna´s side.
Somehow our teammates appeared with some meals from friends and a smaller AC unit. We ate so well today; I feel so blessed.
Dora was over again today and spent time listening to me, praying for Jenna and cleaning a guest room for a dear friend who is arriving tomorrow to help us for a couple weeks.
We also had a weird conversation with our pastors and Ivan our teammate about memorial service plans...I can hardly believe we have to talk about that but we do. We need to know who to call and what to do and to have things in place since things happen quite fast here...I love the faith of Eugene & Joy who asked if we were open to thinking about praying for Jenna to be raised from the dead! I laugh as I think about what a hit that would be to Satan here in the western world!! Of course, there is a time to accept death and God´s will in that, but since so many different sources have mentioned Lazarus, I say, why not??
Don´t think with that thought that we are refusing to accept this process or not grieving; our days are full of tears, sitting by her bedside bawling, prayers - whispered or loud, recalling memories and beautiful things about her and in general, preparing ourselves in some raw way for her to potentially be taken from us for reasons we cannot understand.
16 Oct 2014 Today was stressful as we were trying to come home but there were still some things in the air. I was trying to order oxygen and it looked like it wasn´t going to be able to happen today. In the end, the Oncologist got on the phone and I´m not sure what he did but we got oxygen at home finally.
It was a lot of work to get everything ready to leave the hospital, including Jenna. It was not easy to transport her because of her pain and because she is carrying so much liquid weight. But we finally made it home, got her oxygen hooked up and then got some rest. It was a rough night in the hospital; it´s been hard for all of us to sleep (except for maybe Jordan!). Tonight Dad is sleeping in Jenna´s room with her, Dani is sleeping with me and Jordan is on his own bed instead of on the floor. Lord willing, we will all get some peaceful sleep without nurses coming in on us.
So many blessing during the day...Kory & Laura in the am, Alex & Alfredo & Bruce praying for Jen on their fasting day for her, Ted & Claudia brought by dinner, Dora came by to pray blessings over Jen and Lidia came over with Antonio to talk about medical stuff and affirm her desire to help and be available. We have such amazing friends...
So we are all home! The oxygen tank is LOUD. So is the AC we borrowed from a church which is actually for a much bigger room. At least for tonight she is comfortable; tomorrow we will do some fine tuning.
15 Oct 2014 Could a family cry out more for the life of a child?? Could friends intercede more for a young woman than they have for Jenna?? With all the tears shed in our family alone, it would be hard for me to believe.
Tomorrow we are bringing her home. To die? I don´t know. To be among those who love her most? Definitely.
We see her physical decline every day. We grieve. But not as those who have no hope.
Last night they put her on oxygen. Her movement is difficult and today she didn´t leave her bed. She is losing her voice and she is so very tired and weak. Whenever she is awake, we try to be there to talk, pray, listen, look at photos, cry, hug, kiss, say the things you should say.
The Drs. have moved to get things in motion for her to leave tomorrow. This has necessitated a change of form for some meds. Her pain med is now in a patch on her shoulder instead of by IV. We will make sure that this is working well before leaving tomorrow. The hospice care will monitor some other things she needs to take as well. We also need to arrange for oxygen at home.
This has been both the most terrible time and the most beautiful time as a family. We have loved on each other so hard this week, cried and prayed like never before, exchanged forgiveness (as if anyone cared about anything anymore) and spoken words of love and remembrance and sadness and surrender.
Today we had the blessing of having Dora walk through some forgiveness things with us 3 women. It was especially important for Jenna to have no regrets. Dora is amazing at working in beautiful ways with the Holy Spirit in spite of Jenna´s limitations.
We also got to spend time with Alex, dear friend and psychologist who helped talk us through what the end could look like, what to expect, how to prepare, etc. He has met daily with Bruce in the am´s to talk and pray and grieve. What would we have done without these two and so very many other dear angels?
Dr. Hernandez came by again this afternoon and we continue to call him ¨angel¨. He is an amazing Dr. who has shown special interest in Jenna, comes by on his own time and is literally the only one who has ever shed tears with us. He is a dear.
We had a couple special visitors today and at the end of the day we gathered again to cry out for Jenna's life as a family. The kids and I are all staying here and tomorrow night we will all be at home together. :)
14 Oct 2014 It´s amazing the changes we notice in Jenna. You can see a daily decline. It will really take the most amazing of miracles. I pray He will entrust one to her.
The pain has finally stabilized. She is still swollen and diuretics don´t seem to make a difference. Her Dad loves to go to Burger King to get her shaved ice chips. :) She is so hot that we have the AC on and while all of us are freezing, she is in shorts and a tank top and sipping on ice chips!!
Her movement is really labored as is her breathing. We have to help her with everything. So hard to see and live. She is tired all the time now and is sleeping a lot. But she is aware of what is going on around her...
We talked with various Drs this afternoon and tomorrow will talk with someone from the Pain Unit to discuss her options for pain meds at home.
13 Oct 2014 Today was a holiday here and we let out on fb that we would do 2 visiting hours: 12-13 and 18-19hs. This was a lot of people (around 30 per hr) but it allowed her to see a lot of people in a short amount of time. It was very tiring, however, and after the 12-1 shift, she slept for 3 hours!
We so appreciate all the special friends who came to cheer her up and say their good-byes. Bruce & I were greatly encouraged to see such an outpouring of love and affection.
Jordan was with some friends at a birthday party during part of the day and came back early evening to the hospital. Before he was to leave to go home with Dad, we prayed as a family and wow, what a climactic time that was. Neither Bruce nor I have ever heard our kids pray like that before. I don´t think we have ever prayed like that before either. Some of my reflections are recorded in the post ¨If I Were God¨.
The internet here is lousy and I lost 2 days of updates because it dropped out before I saved it. I´m trying to remember things but will probably have to add to this later...
12 Oct 2014 Today Jen seems a little better. The Oncologist said her liver counts are slightly better & her kidneys are good. (We were a little worried about them when her lower back was in so much pain.) On the other hand, I wasn´t there and he tries to be very optimistic and culturally isn´t always open in front of the ¨kids¨ - even though they are both ¨of age¨. I am staying here tonight with Dani to be sure to see him in the morning. Being a long weekend, staff is more scarce and we only get one shot at him per day.
Jen´s legs and lower back are still swollen and although they´ve put her on a diuretic, I haven´t noticed any change in that. They did say she was low in protein and that could contribute to it. What I´m unsure about is more what they´re NOT saying...
When asking about home care/hospice, the hospital recommended the same place that others have to us - CUDECA - and hopefully by Wed or Thurs we will bring her home and have medical support there. It´s been good to be here and work through what she needs at this stage...although I´m sure things will continue to change.
We are all going through a wide range of emotions and have snapped a few times at each other. We need lots of grace & love right now...as well as respect for each one´s individual process.
Jenna has received some special guests today, all from high school. Maria, Amritha and Lucas all came by for a short time and we were so touched at their efforts - all are in university and travelled from Madrid and England to be here to see her. Am & Lucas put together a video of their graduating class (7!) all sending her well wishes and memories...so touched. We also got to see some long time Argentine friends, the Falcos, and a couple of our teammates. Other than that, we limited the visits and Jenna was quite tired out.
We are requesting for Jenna´s well-being that all visitors call or text to make arrangements before coming. We will be posting some general ¨visiting hours¨ since this hospital doesn´t have any as a way to protect her and reserve her best energy for healing and her immediate family. This is very stressful for us to do, but she does not have strength to see everyone.
If you are more friends of Bruce & Pam, we need & want your support BUT you may not be able to see Jenna depending on how she is. We know our kids are an extension of who we are but we ask that you respect her wishes & need to prioritize at this point. We will be happy to meet with you outside the room, talk & pray and receive you but we want to give HER the priority to decide who she most needs to see and say good-bye to.
Please understand that we wish YOU COULD ALL BE WITH HER AND US ALL THE TIME YOU WANT but it is just not humanly possible. With the uncertainty of how much time we may have left with her - short of a miracle - we have this difficult task set before us of setting boundaries. We so appreciate your love & support and respect of these wishes at this time - more than you know. You show great love for us during this emotional time by honoring this. Thank you.
11 Oct 2014 Got to the hospital late as I had to actually wake Bruce up at noon! I was so happy that he had slept so well until he told me he had been up from 3-6am working! I knew 2 of Jenna´s best friends were with her at 11am so I wasn´t worried. Plus, Dani is faithfully by her side.
I wasn´t feeling well at all by the time we went to the hospital...not sure why I was light headed, sick to my stomach and feeling really weak. It went away later in the day. I do have to be careful to eat with all the distraction & emotion going on.
Jenna was really anxious for us to get there and although Cristi and Sonia were still there when we got there, she really was yearning to have her family around her. She wasn´t feeling great, struggled with more pain today and had a lot of swelling and pain in her back. She also felt some liquid in her right lung. The ER Dr was sent up and he checked her out, confirmed the liquid and requested an x-ray which the did later on right in the room. I feel nervous about the meaning of the edema but she did seem to respond a bit to the diuretic they put her on.
I didn´t get to talk to any Drs today except the ER Dr whom I had never met. Her Oncologist came really early and the girls were still in bed and not super coherent. Whatever he had given her to help her sleep was a total fail since she was awake between 1-4am! By the late afternoon, she was in a lot of pain and I am feeling frustrated about managing her pain as there are changes in it and it´s the weekend with reduced staff!
The highlight of the day was meeting with Alex and Amy to talk about our process (they were SO helpful), the emotions of it, how to plan for visitors, how to help Jen think through what she wants...and then praying with Alfredo who joined us, then Abraham, Mayra & Rebecca who happened to overlap! We had a beautiful & powerful time of prayer. I was so peaceful after that.
Jenna was really tired after that and Tomás and Raquel dropped by just as the others were leaving. They are avid intercessors for her and friends and it was hard for us to tell them she needed to rest but we did. They were sensitive and left fairly quickly - but not before blessing us!
After that we needed a bit of quiet and while Jenna rested, we were on our phones & computers trying to catch up (impossible right now). By recommendation of Karima, we had communion together and that was special.
Bruce, Jordan and I came back to the house and Dani is staying again with Jenna. I pray she has a better night...people are literally praying everywhere for her...how can something amazing NOT happen??!!
10 Oct 2014 Surprisingly, Jordan wanted to go to school, so he and Dani took off early. I think he really wanted to be among his buddies at this time; he was communicating with all of them yesterday´s news. Dani wants to take next week off to be with Jenna and the Director is encouraging her to do so.
I helped Jen with a shower, received our pastor Cristóbal and Fernando from our church of 10 yrs and were so blessed to have Dora come by and pray. Then there was the typical unending parade of nurses & Drs...
The kids came back early at 12:30 and Alex picked up Bruce at the airport at 1pm and brought him to the hospital. It was a sweet reunion and such a relief for us all...yet we relived a lot of the emotions from the day before in all the retelling. He got to talk to the Oncologist and get more up to speed on what was happening. We are still figuring out meds for Jen and she still has to ask for things but today was better.
Her ankles are swelling; it could be from all the laying around and/or the lack of proteins in her nutrition since she went close to 3 days without it. Not sure if it could be anything else...
The amount of phone calls, messages, texts, emails, etc., etc. is overwhelming and we are sorry if we can´t answer each one! We need to be present to one another right now...
Jordan went to a b-day party in the evening and ended up spending the night at a friend´s. Bruce and I went back to the house, completely spent. He was jetlagged and I was crying from all the emotion & exhaustion. It was really hard to fall asleep.
9 Oct 2014 How to put this day into words?
They are finding the balance with pain meds and although Jenna has to ask for the next one most times, she is much relieved and is sleeping a lot. Since pain was the most critical thing, we are all happy that it is being resolved.
The oncologist wanted to talk with me in his office. We all know what that means - not good. He said her situation is very complex and desperate. She is very critical. In spite of the PET scan and bloodwork for tumor levels being negative, the biopsy of the liquid taken from her abdomen came back positive. The sky-high liver counts are due, they believe, to tumors. Oh how I longed to have my husband by my side!
He believes she has 1-2weeks to live.
Thank God our dear friends Alex and Amy were with me when this news was communicated. They were with Jenna while I met with him and stayed on with us for quite a while. Then our teammates started arriving...what would we do without Ivan y Lorena, Kory & Laura, Kyle and Nell? They are all angels to me. Later they communicated with Ted & Claudia who are currently traveling in Brazil and they called me, too.
I finally got a hold of Bruce who is 9 hrs behind us in Arizona. What a relief! He was as shocked as we had been. We cried and prayed and talked. He was thankfully able to change his ticket to leave today and so will be with us tomorrow midday.
I had the difficult task of communicating this with Dani and Jordan. We are all broken hearted but trusting at the same time. Jenna is so full of love for us and we can´t imagine life without her or our family unit without her...
I spent a lot of time with people, my children, Drs & nurses and on the phone today and I am just now getting to the blog to let all you dear ones know...How I wish I had better news for you who have been by our sides constantly in all these months! I pray God will reward your love & sacrifice...
We all slept at the hospital, Jordan on cushions on the floor, me on the couch and Dani on sort of armchair that leans back. Such a sweet, sweet feeling. Jenna LOVED it. :)
8 Oct 2014 A most unhappy night. Jenna wanted to sleep with me last night but she was never able to go to sleep. The pain in her abdomen just kept escalating until it was unbearable and I finally took her to the ER where they put her on a pain med and admitted her. It was a rough night. They finally got some relief with morphine in a shot form and are alternating it with things less strong.
I was so disappointed. When she woke me up to tell me how bad she was, I started praying hard for her but it was to no avail. How do you explain that? We had to go anyways and today we missed going to Budwig just when I felt so close to some progress! Now we are here in the hospital at the mercy of traditional drugs. (Although since her pain was so great, I´m not against using traditional!)
The main things today has been managing pain and she has slept a lot of the day. I can´t tell you how wonderful it was to see her sleep! It made me so happy. In the late afternoon her oncologist came by and ordered a sonogram and they are planning to drain both her J-tube and more from her abdomen (not sure if that is today or tomorrow). Then the GI Dr that had helped us out last Thurs/Fri and did her paracentesis came by to see her and is ordering another med to stimulate her system.
He also commented that she looked jaundiced and I had already been in touch with her Endocrinologist about her most recent bloodwork which is showing that her liver is really overworked. While the Endocrinologist says it´s common in patients with TPN (nutrition by vein) like Jenna, I still don´t like it and want to talk that over with her. She´s coming by tomorrow. We both love this Dr. - he´s so gentle & peaceful and we are calmer after speaking with him. :)
Dani took Jordan back and forth to school today; that is working out great!
7 Oct 2014 I picked up the Hemp oil and we tried a tiny drop in the afternoon when she was in pain. We didn´t notice any difference. We tried again at night & no difference either. They said it may take some time to build up and for us to find the right amount for her. But I confess my disappointment.
She was extremely anxious in the afternoon and so sick of having pain and no life. She just wants it ¨to all be over one way or the other¨. Me, too. Who can blame her? It was a hard moment to sit and cry with her and try to calm her. I prayed softly for a long time and when I was done she was asleep. So sweet. It didn´t last very long, though.
We plan to go tomorrow to Budwig and do the IV cocktail that seemed to bring some relief and to try the oil again at night. In the meantime, I keep praying for healing on every level - emotional, spiritual, physical.
I am glad Dani can be working and busy even if it has meant having less help. She has been a different person since starting work. It isn´t without it´s challenges but she seems to be doing a great job & is falling in love with the kids and they with her! She had to make a rule that they can only kiss her at recess - not in the classroom - because they were so distractedly affectionate! haha
We´re definitely all missing Bruce & perhaps especially Jenna most of all...
6 Oct 2014 Today we went to Budwig (although Jenna didn´t want to go anywhere!) and I was determined to have them try something else, something stronger for her main symptoms to increase her quality of life and get her some sleep so that she can heal! We are in the 6th week of no eating, no sleeping, constant nausea & vomiting, intense abdominal pain & distention, etc. They were very attentive and had been very concerned when we didn´t show on Friday (we were in the ER at the hospital doing the paracentesis).
They gave her an IV full of homeopathic stuff but also added some other stronger, more traditional things for pain & nausea. The nurse was SO excited when she was already feeling better after that!
I have had several people ask me ¨What about medicinal marijuana?¨ so I had asked them about that and they have a contact but wanted to try a couple other things first. Since they hadn´t worked, I asked again for the information and they wrote down 2 contacts for me. The cheaper one is kind of far away but surprisingly enough, he showed up this morning at the clinic while I was there! They called me in to meet this rather eccentric German chemist who lives on a farm and prepared the Hemp oil from the seeds. It comes in a concentrated oil and all she will need is a tiny drop rubbed onto her gum in her mouth; she won´t have to swallow anything! Another man was there with him whom I have seen receiving treatment there recently and he was highly praising it. The German chemist, who had enough BO for various men, was passionate about his work and helping people. He told me he has a special burden for kids and young people and that he´ll sell to me at half price. Then he gave me a huge bear hug. :) Gotta love my medicinal pot supplier! haha
PLUS: We got back some of the bloodwork which they do through a lab outside the country which apparently does a much more thorough jog of analyzing tumor markers. Jen´s came back as NEGATIVE FOR ANY AND ALL TUMOR ACTIVITY!! WOW!! ISN´T GOD AWESOME!! (Now if she can just get better!)
5 Oct 2014 Jordan and I went to church while Jen and Dani went to church ¨online¨. Dani was really encouraged when we got home but Jen was still really quiet. I was tired as I had a really weepy morning, feeling discouraged & burdened about all this. Going to church is exhausting since you have to tell everyone about Jenna...I can´t ever just really be myself...but everyone is so supportive and well-intentioned in their questions. I am always especially glad for the worship.
It was a fairly restful day and at 4pm I went to the airport to have coffee with an old friend from Buenos Aires who had been here for a conference for his work. Such a treat to see César as his wife had been one of my first friends there when we arrived and we had our 2 girls one after another. It was bittersweet to talk about life as since then he has lost his firstborn in a tragic accident at 17 and his Mom last year (whom I knew & loved as well). There is definitely a Before and After in your life when tragedy strikes. It was a beautiful time and a lot of his reflections were helpful to me.
Bruce is really busy at his conference and we all miss him!
4 Oct 2014 Had a nice birthday. :) It started off sad as I was missing Bruce and soooo disappointed after the big efforts to help her feel better through the paracentesis and yet it hardly changed a thing. It was very depressing to me to see her still lethargic, in pain, vomiting, not sleeping, etc. I felt like running away from it all...But Dani made me breakfast in bed before she left for a ballet class & that was so thoughtful.
I went out to do a bit of shopping and later at lunchtime, Dani, Jordan and I went out for a nice lunch. I was hoping maybe Jenna could go if we sat outside and she couldn´t smell the food, but she wasn´t up for it. Later her 3 friends came over and with Dani driving they went down by the beach for a bit. Jordan hung out with a friend and we all watched another movie at night.
We are missing Bruce and feeling so helpless with Jenna´s situation. We pray all the time, with her or alone and so, so many others are as well...How long, oh Lord??
3 Oct 2014 We did manage to get Jordan into the house and Dani got home and we all fell into bed exhausted...
Jenna and I spent the whole morning at the ER where the endoscopy Dr did the paracentesis on Jen right there. He was a great guy, very calm. The needle they used was the biggest I had ever seen! Long and thick. They gave her a local anesthetic (painful in itself) and then after looking for the correct spot via the sonogram, put the needle in and began to drain liquid. They sent some off to Pathology so they can evaluate it (10-15 days) and the rest began to drain into a bag. More than 2 liters and 4 hours later, we were on our way home. While she was waiting, we got her port changed (they had to try twice before they got it right) and send blood to the lab since we couldn't get everything done the day before. I also picked up some more supplies for her nutrition. We did all this in 5hrs and got home spent out!
Jenna is relieved of pressure but she is still in pain. I can´t believe they can take 2 liters of stuff out and she only has minimal relief! I can hardly see a difference in her belly...I wish there was so much more we could do for her intestines...Oh how I pray they can begin to function!
Jordan went out with some friends this evening and the girls and I watched a movie. Ted and Claudia came by to say Hi, too. :) They brought some homemade goodies for my birthday tomorrow - so yummy! We skyped with Bruce mid afternoon but he didn´t have much time...Dani had a full day at school and came home exhausted from her week.
2 Oct 2014 Well, my faith was certainly tested today! By 10pm I was quite undone...
I spent such a pleasant morning with Jen, reorganizing some things in her room and talking with her about the complex emotional-spiritual-physical crisis she is living. It was good.
AFter getting Jordan off to futbol and Dani off at her dance class, Jen and I went to the hospital supposedly to see the endocrinologist for bloodwork and to get her port changed. One thing led to another and we ended up visiting the oncologist, going to the lab for bloodwork which got interrupted by a call to go to Endoscopy to get an NG tube placed to drain some of the air and fluid in her gut (which she wanted). The Dr there, however, felt sure she needed to drain her abdomen (paracentesis) and wanted her to check into the hospital, monitor the NG tube and do the procedure (paracentesis - using a long needle, drain fluid from the abdomen) first thing in the morning. It turned into a stressful time as we were both by then exhausted, I couldn´t get a hold of Dani to get back to the house to receive Jordan who was coming home with a friend from futbol and had to get Ted & Claudia to cover that for me plus an urgent trámite (paperwork for SS) for Dani that needed to happen the next morning for her new work. We talked the Dr out of keeping Jenna for the night and left about 10pm promising to come back (thru the ER) first thing in the morning for the procedure.
The Dr said she has enough ¨free floating¨ liquid in her abdomen to warrant emptying it although her oncologist didn´t have the same opinion after her recent sonogram. But I was just wanting to relieve her pain any way possible so we went for it. We told him about the problems with the J-tube (Jenna empties it 3x/day and the bile just flows...He said the body produces 2 liters of bile per day! Wow! Where is all that going??! Her abdomen is so bloated, poor thing...While doing a sonogram, he showed her how inflamed her intestines are (about 3cm wide) next to normal small intestines (about 1cm). Just with inflammation alone, her intestines are 2x their normal size! Inflammation is always painful - no matter where it is on the body, so just imagine your whole abdomen full of that kind of inflammation...
1 Oct 2014 Dani started work today and so she took Jordan to school; a first! I went to my pool class and as I was going there was struck in my heart with peace that this is indeed the time to move forward by faith into a different season...He gave me several scriptures and although there is uncertainty, I feel that something will be happening soon...
I expressed this to Jenna on the way to Budwig. I was really hoping for something different there today...what they´ve been doing hasn´t seemed to make any difference. They are all visibly concerned and really want something to work...Today the Dr tried acupuncture - that was a first! We´ll see if it makes a difference! We also talked with the psychologist there who dropped by the main therapy room and who always asks about her. He really feels there are emotional elements to illness and we agree with him. However, Jenna doesn´t feel comfortable with him and we need to find some kind of outlet for focusing on this part and getting some skills for self care for the future. I felt this was an important and timely conversation. I am focusing some of my prayers in this direction as the Lord leads...
30 Sept 2014 It was a really full day for me (or maybe it´s just that I feel so tired right now). I got some time with our team & that was really great. I did some things with Jen then did the school run midday (carpool). In the afternoon, Jordan skipped practice due to a pulled hamstring which needs rest to heal (very difficult for him!) and we went to do his paperwork for the league stuff. He actually has a FIFA #! That is pretty cool. Fortunately, he doesn't have to do a medical check this year. I dropped him off with some friends and headed home to help Jen. Dear Ted & Claudia sat with Jen while I was out since Dani was teaching her dance classes. Jenna is so miserable so much of the time that it makes the rest of us sad that we can´t do more...
Tomorrow starts Jordan´s full days of school as it will be Oct 1st (8:30-4:30). We have his uniform ready and I´ll start packing his lunch, although some of the Moms are going to graciously halpe me out again this year several days a week. :) They are great!
Super encouraged about the donation site that our dear friends Kati & Suz put up; people are so overwhelmingly generous!
I´m feeling anxious about Dani starting to work tomorrow...she´ll be working at Jordan´s school in the mornings as an English monitor and has dance classes 2x/wk there in addition to her other 2 days of dance classes at a tennis club. It´s great experience for her and the money helps with school. These jobs literally fell in her lap and we received them from God since there is a 50% unemployment rate for the 18-25 year old age group! Both Bruce and I feel it is important for her to have a bigger outlet...yet it is difficult for us emotionally, a sacrifice for Jenna to not have Dani around & available near as much and it means I need to be more available - which I am glad to do. In a way, we are doing this by faith, not know ing how it will all turn out...
29 Sept 2014 Went to Budwig and they did homeopathic IV, massaged her abdomen, asked a lot of questions, did Papimi (electromagnetic) and ozone therapy. She is still no better. At home we still do things to try to unclog her system but we are all just so tired of nothing working. She is exhausted in every way...
Bruce was due to leave on a trip today but his Air France flight was cancelled due to the strike so we get him one more night! Had a lovely prayer time as a family altogether on her bed before we went to sleep.
28 Sept 2014 Fairly quiet day. Bruce, Jordan and I went to church and late afternoon we were able to take Jenna down by the beach to walk & push her in the wheelchair. It was so good to get her out. :)
27 Sept 2014 A bit better today but not much. It´s Saturday so no medical stuff thankfully. Got the wheelchair cleaned up but it´s raining today! Received lovely visitors Murray & Carol, had lunch with them, Carol helped me with some household stuff and then they prayed for Jenna. Carol´s been a wonderful prayerful advocate for Jen in these months and that was a blessing!
Jenna also got a surprise visit at 11am from Cristi, Leila y Sonia; what joy they bring!!!!
Jordan had a game in the rain he wasn´t too thrilled about but at least it had stopped pouring. This is still a friendly match; next week the league games start.
26 Sept 2014 Dani took Jenna to Budwig today where they did IV homeopathic treatment, ozone therapy through her blood and some kind of light therapy. We are still waiting for more visible improvement in Jenna´s symptoms!
After my pool/back class, Bruce and I went to the botanical gardens to talk and pray for a few hours. That did us a lot of good as we hadn´t had much time for that. Having mate surrounded by green and getting caught up was wonderful!
We had a late afternoon visitor and Jordan went out with some friends and Bruce went off to a prayer meeting at our friends´ Abraham and Mayra´s church. Jenna was in extreme pain so Dani and I lit candles and I read various Psalms while Dani massaged her abdomen with oil. She got some relief and we were later able to watch a movie together.
25 Sept 2014 Dani & I took Jen to Budwig where they did the IV therapies and tried another tube to try to let out some of the air. I wouldn´t say they were very successful. Try again tomorrow.
A friend came by to pray for Jenna and Ivan came by with the mellis to say Hi and bring a little cheer they had made (pic in Blessings). Then Jen and I rushed off to the hospital where we borrowed a wheelchair from the ER to go to have her Port pin changed and get her nutrition. Jenna wants to track down an NG tube to try to continue to drain air out of her abdomen but we didn´t make any progress on that. I am amazed at how many people know Jen at the hospital; everywhere we go they know her and greet her!
Dani had a meeting at school regarding her new job starting Oct 1st as well as giving her dance classes. She has fallen in love with teaching and with these girls and they love her! So happy for her and this outlet.
24 Sept 2014 No medical appts today. Dani & I tried to encourage Jen by deep cleaning her room and getting some more stuff out of there to keep it less cluttered. It´s not easy when it´s been my office and some of my old stuff is there plus now her stuff. Anyways, it looks and feels so much better thanks to Dani who stayed at it when I had to attend to some other things. Dani is sleeping in there until she starts her new job next week and has to get up early.
I spent quite a bit of time making a special ¨break-the-fast¨ dinner for Bruce, Alex and Alfredo who are finishing a 10-day fast. I was so touched to watch their love & sacrifice for Jenna and us during this time. They prayed a lot together after or before work and I know they all paid a price. Bruce had a meeting which got extended past the 8pm dinner time and Alfredo didn´t catch the correct time so poor Alex who was on time waited for another hour and a half for his dinner! They all loved it. I could have made liver and lima beans and they would have loved it after that!!!
23 Sept 2014 Had to take Ruthi to the airport this morning...not easy. We will miss her so much. Then we spent 5 hours at Budwig today. Between a Dr´s consult about all of Jenna´s ongoing symptoms and a few therapies, it was a full morning. We are looking at coming 3 days a week for a couple weeks to see if we can get her out of this slump. There are a number of homeopathic remedies that she can get through IV and through small pills that dissolve on your tongue. (Since she can´t swallow anything right now nor get anything into her J-tube.) Her Dr put together an IV for her today and a package treatment to order at the Pharmacy which targets her vomiting & nausea, stimulates intestinal function and lowers the inflammation in her abdomen.
Today they also decided to try getting some of the air out of her intestines by inserting an NG tube down her throat (awful) and drawing out some of the air. This brought quite a bit of relief as a lot of bubbles and liquid came out but she is still distended and there is a ways to go. But hopefully this will put us on a different track.
22 Sept 2014 Finally an encouraging day! What a gift!!
First of all, Jenna got some relief in the am when we tried a different tactic for cleaning her out and she got some air out which was a relief & encouragement. (I can give no further details in an effort to protect the innocent!)
Secondly, after days of cloudy, overcast weather (I know, I know, we´re so spoiled here in So. Spain!), it was a sunny day and it brought us light sensitive people a boost! We were going to go to Budwig but at the last minute had to change plans to go tomorrow. Since the 3 girls were up and ready, we decided to take Ruthi out to Málaga to see the Gibralfaro castle and the amazing view from up there. Jenna was feeling only slightly better but she went and we had such a nice time. I am SOOO happy for Ruthi. :)
Then we picked up her Pet scan results and read them on the way home: they detected NO OTHER TUMORS OR ADDITIONAL CANCER!!!!! Wow!! Thank You, Jesus! Ruthi was so delighted; she had been fasting all weekend until we got the results of this test back. This just made her day (and all of ours; my heart was singing thanks all day!)
21 Sept 2014 It´s so hard to watch your child suffer. I can´t tell you what it´s like to hear Jenna throwing up in the night...my heart is just breaking & I can only pray for mercy...
We have not been able to get any medication into Jenna through her J-tube because when she opens it, it just drains bile! Things are so stopped up inside that even the bile isn´t going down. We can´t seem to get the medicine in - well, the natural enzyme which is the ONLY thing we have that is for relieving inflammation in her abdomen & supposedly absorption of liquid. I feel desperate to get this in her! We will take her in tomorrow to Budwig to see what they can do...
Bruce went downtown to our old church today and was super touched. Jordan and I went to our nearby church and really enjoyed Amy´s presentation for teaching the Jr highers this year...Praying this will be a good year for Jordan in his walk with Christ. In the afternoon, Jordan had a game and unfortunately turned his ankle in his first 5 min in the game. I sat with my good friend Espe who has been such a help & comfort to me this year.
Things seem depressing at the house with Jenna so quiet and miserable. None of us can believe that tomorrow is Ruthi´s last day! O Lord, please give them a good day!
God is really working in Bruce´s heart and he was very weepy as he sat in the kitchen today sharing with Dani & I all that God is saying to him at this point in the fast. We are so touched by 2 other friends that are doing this with him...what love. So thankful for my husband and his tenderness to God & determination to bless his daughter with whatever God has for her. My kids are very blessed to have him for their Dad. :)
20 Sept 2014 Poor Jenna is so tired of feeling so bad. She literally is not sleeping she is so nauseous. No medication we have tried does anything. The Dr. called today about the sonogram and said there´s not enough liquid to try to drain it; there´s more air in her intestines than liquid in her abdomen. She is taking one natural enzyme that´s supposed to help with that but so far, there´s not been a big difference. We need a breakthrough and her body needs to get rid of this trapped air that is so painful!
Bruce took Jenna & Ruthi down to the beach this morning. I was so happy that they got out. It wasn´t that Jenna was feeling better - just that she was desperate to get out - and to her favorite place: the beach. :)
Jordan, Dani & I did a lot of work in our front patio garden today, getting some better, more enriched soil in there. It looks so much better; we´ll see how the plants respond...
Jordan had a birthday party to go to...he has an awesome social life! We have had a prayer time as a family and Bruce is praying with a friend tonight as well. He continues to pray and fast.
19 Sept 2014 Exhausting morning doing a sonogram at the hospital to look more closely at the liquid & air in her abdomen. Jenna was feeling really nauseous and looked miserable. For some reason we had multiple problems trying to get paperwork electronically due to the poor internet at the hospital and I was so frustrated having to go out several blocks away to try to get things sent from my phone that they needed. I finally had to call Bruce at home to send them from my computer and that finally worked. But finally she was in.
After that we went to downtown Málaga for a Pet Scan, the radioactive one that´s for measuring cancer cells. It´s actually called Nuclear Medicine. How scary is that?? Anyways, it´s a long test that probably took an hour and a half or more. Should have results on Monday.
Came home exhausted for a late 3:30 lunch...rested a bit and Jenna received a couple of friends which did her good, Cristi & Sonia. Jordan went out with some friends and Bruce and I watched a movie together on the bed, The Jazz Singer. Can´t remember the last time we watched a movie like that...(with the exception the other night of the 40min Sports Ambassadors video!) Jordan was the last one in at 12:30pm...I was basically asleep on the couch waiting for him.
18 Sept 2014 Quiet day for Jen; same symptoms. I only had to go to the hospital for her nutrition for the next few days, otherwise it was kind of like a day off! Tomorrow we have 2 important things: a sonogram to measure the liquid in her abdomen and a Pet Scan.
Dani did presentations at Jordan´s school today for her dance classes and I´m excited about her opportunity there. Jordan is excited and proud to have her there and that has been super cute. ¨I can´t believe my sister is going to teach at my school and I´ll get to see her!¨ Needless to say, that made Dani´s day!
At night we all huddled on the bed and watched an old short movie that Bruce is in. It´s a Sports Ambassadors film based on a true story of how a basketball team helped reach a village in the Philippines with the gospel. To us it was hilarious! Bruce and I know all the ¨actors¨ and Jordan couldn´t believe his Dad was in a movie! It was made 30 yrs ago. Bruce says it was both the ¨start & finish of his acting career¨! haha
17 Sept 2014 Spent an exhausting 3 hours at the hospital this evening. Got Jenna´s Port changed by the oncology nurse and then waited forever to see the Oncologist. We pushed for clarification about how much of her abdomen distention is liquid and how much is air/gas. We clarified that the air is inside her intestines and that all the liquid is in the abdominal cavity. He said it is extremely complex and that there are many reasons for the current dysfunctions in her system. Perhaps the most typical would be post-surgical and post-heated chemo wash during surgery adhesions which are complicating her GI functions. He really had no solutions to this. As to how much liquid is actually there and if it has increased in the last few months and if it is increased cancer cells related, we have to do another sonogram to determine that. Why we haven´t done that yet is beyond me. He doesn´t want to say that all of this is cancer-related; he is holding out on some of the post surgery complications.
I reminded him that when Jenna had her J-tube surgery the surgeons were very surprised at how good her intestines looked. They literally said, ¨They looked as if they had never seen a surgery.¨ That was amazing! (Why they´re not functioning normally is a whole other story!) Of course, the other thing they said was that they saw some more growths in there which they felt were cancerous. However, they were not biopsied.
Jen will have this sonogram done on Friday morning and some time next week we´ll probably see the Dr again. She also has a PET scan on Fri. Hopefully, with all this information gathering, we should have a clearer picture of where we are at in all of this.
This all pretty much is pointing back to the alternative therapies that can bring her relief and health since the traditional Drs have run out of ideas...
16 Sept 2014 Had an encouraging visit to Budwig/Biomedic Center. We had a long appointment with the head Dr and I had a good talk with our favorite Dr later on in the hall while Jenna was doing a Papimi (electromagnetic impulse) therapy.
The Drs felt that (1) her digestive system is overwhelmed and still not functioning properly. That´s not new news but perhaps Jenna´s going back to eating whatever she wanted in August (although healthy) was still too much on a system just ¨waking up¨. It has definitely been protesting and her swollen intestines are proof of that. (2) the liquid in her abdomen is not accompanied by any rising tumor levels in her bloodwork or evidence in her scans & her liver is functioning great - all really good news. So it still could be related to the GI system´s slowness instead of growing cancer levels. She gave us a prescription for an enzyme that helps absorb the liquid & lessen swelling so we´ll see first what impact that has. They don´t want to attempt drainage yet until they see if the enzyme works. (3) they did some more neuropathy both on her abdomen & on her 6th and 7th vertebrae which should stimulate proper intestinal function as well.
One of the Drs told me of Hering’s Law of Cure, which says once you’ve started a remedy, you will briefly revisit your symptoms in the reverse order in which they appeared. This could be the reason why Jenna has had this down time so soon after finishing all the therapies that are so pro for her immune system...and it could mean that things will only get better!
Tomorrow we will meet with the Oncologist to have a candid talk with him about what he thinks this all means and how to proceed. Now that Jenna´s system is at least regular, we need to know why is all the air in there still going up and making her throw up? Why won´t it go down? When will the intestines become less inflamed? Why does she still have pain and how to control it better? What does he think should be done about the liquid there? Why does she have no energy? It seems like we get better answers when we go to Budwig...and we come out feeling more encouraged - there´s always something they can do for her!
By next Monday or Tuesday, we should have the results of the Pet Scan and that will be good information, too.
15 Sept 2014 Physically, it was basically the same kind of day for Jenna with the same ongoing symptoms. So grateful for Ruthi who has been a constant source of companionship & so helpful to me around the house.
Today was a BIG day for Dani as she was trying to determine how/where to do some dance classes for some girls who have been asking her. She had to negotiate various things with a tennis club who is going to let her use a room there and help get more students by lending her a glass-walled room where others can see them! Because they were wanting a high percentage, we checked in with Jordan´s school to see about their facilities and in the end, it looks like she´ll be giving classes there, too, plus working as an English assistant. Basically this means that God provided 3 jobs for her in an economy of 50% unemployment for her age group and just a week after she made a decision to stay on here in Spain for another quarter or so! Amazing! She is flying. ;)
Jordan had a good 1st day of school with the highlight being - shocker! - playing fútbol at recess with all his friends. Even though he´s not excited about studying, he is glad to be around his friends again and I was happy to see so many Moms and staff again. Everyone who hadn´t seen us lately wanted the scoop on Jenna and I can´t wait for the day when I have really good news...Had coffee with several other Moms from Jordan´s class and it was great to catch up.
Felt victorious about getting copies of Jenna´s most recent scans & x-rays in an hour after being told by phone it would take 7 days! Haha. I got in the car and went down there and with people who know my face and Jenna´s situation, walked out of there with a huge smile - and a CD we need for tomorrow´s appointment at Budwig Clinic. Knowing people goes a long way. :)
Feeling encouraged after some visitors who came by to pray - Abraham & Mayra and later on, Alfredo. then Amy brought by a dinner! Wow! Feeling like a queen...
14 Sept 2014 Thankful for a quiet day for Jen. Bruce had some last minute coffees, did some airport runs and got to church and I took Jordan to a fútbol game (fortunately, Sunday games are infrequent) and we all met back for lunch. The afternoon was definitely siesta and then some mate by the pool (where Jordan and Dad traditionally ¨have it out¨ in the water; it´s very entertaining!).
Jenna wasn´t feeling any better but at least the calm environment did us all good. We sat around talking part of the evening and Jordan and I got last minute things ready for his first day of school. With everything else going on, Jordan has definitely received the ¨short end of the stick¨ lately, but I´m glad we can get back into some routine and I love having ¨windshield time¨ with him in the car.
I had a good skype with Cathy, my dear nurse friend, who is currently on a trip in the US. I will miss having her nearby for a while since she and her husband David have been hired as consultants in Uganda to help develop cancer care and insurance on a nationwide level there. So happy for their 6-week opportunity...
I can always count on Cathy to be careful but forthright, educational and caring and after listening to all that was going on, she feels we are right to put everything out on the table with the Drs this week. It´s important to determine if we are transitioning into a different phase and to change care strategies accordingly. She also commented how important it is to find ways to keep Jenna comfortable as far as pain and to determine what is in the liquid in her abdomen. This week we´re set up to meet with the Budwig Center Dr., the Oncologist and have a Pet scan (which is the best scan available for cancer).
God is in control. Always.
13 Sept 2014 Bit of a scare this morning...Jenna's J/tube had come out quite a bit, it was oozing quite a bit and hurt. We went to the ER (because what would this week be like if we didn't go to the hospital every day?!) and the nurse started to clean it and the whole thing came out in her hand! We thought for sure she would have to be admitted and have a little surgery to put another one in but in the end a surgeon came, inserted a new one and stitched it it with NO anesthesia. Poor Jen, she was crying when we were let back to see her but everything was done quickly.
I talked to Jen's oncologist by phone whom we will see on Wed...we have a lot of questions for him about what all of this is leading up to. No more being indirect; we are going to ask him point blank. Can you biopsy some of the fluid in her abdomen and tell us if there are cancer cells? Can you drain her abdomen and relieve the pressure? Is this a sign of "the end"? What symptoms should we expect to see? How will they be managed?
I keep wondering why after such an intensive investment in the alternative therapies her body seems so much worse just a couple weeks after completing it...what does all this mean??
We have a team from our region meeting at our house these days and it's been stressful for me to not be able to be with them because they're so awesome and difficult for Bruce to be in the middle of it all. They were all super sensitive about our situation but it was still a tough week for us. I'm glad they had a profitable time but will also be glad to regroup tomorrow as a family.
It was a relief to get Dani back home after her 2-day camping trip. All the other 5 girls came in to say Hi to Jenna. After the intensity of these days, having her presence here is a real comfort.
12 Sept 2014 We didn´t get to see the GI surgeon we expected; we saw one we don´t know too
well and he was NOT too helpful! The good news is that there is NO obstruction in her intestines; the x-ray showed 8 hours later that everything had passed. The bad news is that they can do nothing elese for her. As a surgeon, he only knows how to operate and he said since there was no obstruction, she was not a candidate for surgery. We were certainly not even looking for surgery! The oncologist sent us there for another opinion and further insight (or so we thought). The GI Dr. said there IS NOTHING ELSE THEY CAN DO FOR HER. That was a hit. Back to square one.
I kind of had to drag it out of him (Spaniards can be fairly direct but in the medical world we have found them to be quite indirect), but he believes this is the continued process of the cancer and that small tumors within her abdomen are causing the liquid & air build-up and that we can only treat symptoms. In spite of the fact that scans and bloodwork show NO tumors, they believe this is the explanation for her symptoms. Is this the beginning of the end?? This is the most sobering question of my life...
I made an appointment at the Budwig Center for next Tues to get their opinion and input and an appointment next Fri for a Pet Scan (the scan specifically for cancer). We´ll see what they say...
Tonight Jenna and I cried & prayed together and it was quite sacred...may we all fully cooperate & believe in His good and perfect will for us...
11 Sept 2014 Went to the hospital 2x today to do a contrast & 2 x-rays to see how is travels through her intestines. One x-ray is done right after ingesting a liquid (she had to put it through her J-tube because she just threw it up) and one is done 8 hours later. She also had her Port changed and we picked up her nutrition and supplies for the TPN. Tomorrow morning we´ll see the GI surgeon who will evaluate the x-rays and hopefully give us some solutions to this ongoing situation.
10 Sept 2014 Went to see the Oncologist again who reviewed both her abdominal x-rays where there are pockets of air & liquid (mostly air). He can´t exactly determine why there are air pockets & a distended abdomen so he called the GI Head Surgeon. We will see him on Fri am. The Oncologist also arranged for a test tomorrow (we will check in through Emergency) to see if there is somehow a partial occlusion of some type. The x-rays show there is no occlusion. We pray there can be some answer & correction of whatever is wrong!
9 Sept 2014 The same. Still throwing up, still distended, painful abdomen. It seems there is noise & movement within the intestines and they are getting slowly more cleaned out, but something is not right.
We have a group coming to meet here in Málaga (basically at our house) and we have had team meetings Mon & Tues so I haven´t had time to tell you all much about the weekend...
8 Sept 2014 Had a great weekend away and will share more tomorrow. Jenna is not really much better and we are sad that it is taking so long to get out of this down time. I guess we all thought it would last a week or so but its going on 2. We need wisdom and a breakthrough!
5 Sept 2014 We're taking off for a couple of days in the country. Some friends, Salvador y Loli are called last week and asked if we would like to have a getaway, so YES! We are going. There are some thermal waters with curative properties and we're gonna let Jenna soak there. :) We probably won't have much internet, so I'm signing out til Monday.
Please pray Jenna will feel well enough to enjoy these surroundings & that we will all experience rest & spiritual renewal.
4 Sept 2014 Jen is a little better and the Dr's ideas are working. But she is still throwing up a bit and we are still not out of the woods. She is sleeping & resting a lot.
Bruce and Jordan left for a house in the country that we'll use this weekend to check it out. They'll come back for us tomorrow.
3 Sept 2014 Back to the hospital this afternoon to meet with the Oncologist and evaluate the scan. Dr. Ortega is our favorite but we don´t get to meet with him as often as another one who has more availability. His encouraging, positive temperament and thoroughness always does us good.
The scan DID NOT show any tumors; thank God! It DID show a lot of liquid and air in her abdomen and that is why it is distended and painful. She has had liquid in her abdomen for a while; what we don´t know yet is if it has increased. There can also be a lot of reasons for it. So this is still to be evaluated. She did yet another abdominal x-ray before we left the hospital (last ones to leave Radiology again at almost 9pm!).
The Dr. was SUPER helpful with her backed up, dehydrated GI system, giving us some new things to try which the Endocrinologist had never mentioned. She already got some relief before going to bed. (No more information on that one!)
We came home relieved and are hopeful that this lousy week can soon be put behind us and we can move forward. She is still tired and dehydrated (in spite of constant nutrition and IV fluids) so I hope she can soon begin to drink and eat again. The vomiting has lessened and as her system cleans out it should go completely away. We pray towards this...
2 Sept 2014 Jenna was more peaceful after Randy & Dora were here and slept a lot better last night. Thankful for that. The pain in her abdomen & back has gone down but the other symptoms are still there.
In the afternoon, at the hospital we were able to see the endocrinologist who said the positive thing is that Jenna´s intestines have a lot of moving & noise going on and she hasn´t had that before. So I´m glad about that! But there is a hard spot that has Jenna - and the Dr - worried. It could be any number of things but it needs to be ruled out by a scan. Apparently the sonogram & x-ray of Sunday don´t show much.
We saw the Oncologist on duty who examined her abdomen as well and ordered an Urgent Scan for the same day. We are to go back tomorrow to meet with the head oncologist and have it evaluated.
She had her Port line changed by the oncology nurse in the chemo area and then we went down to Radiology for the scan. We were the last people walking out of there at 9pm. I was so glad to have done 4 things in 3 hours at the hospital; practically a record!
1 Sept 2014 Where in the world has this summer gone??? I feel like we haven´t even had a summer...I have not had that hazy, lazy summer feeling or time to relax or time to sing ¨summer breeze, makes me feel fine, blowin´ through the jasmine in my mind...¨ I´ve been to the pool a few times but only a couple times with the family to the beach. It has just been so full of health stuff and visitors, the patio project and for me, it has flown by...wow.
Today some dear friends are coming by to pray for Jenna in a bit, Randy & Doralicia. Dora has met a couple of times with Jen to pray & for spiritual direction. She is awesome. We need a breakthrough!
31 August 2014 Sunday am Jenna wanted to go to the ER so Dani, Ruthi and I took her while Bruce went to church and Jordan took a 3 hr nap after his all nighter. It was one of our faster experiences at the ER and the Dr. did both a sonogram and an x-ray. The sonogram showed a lot of liquid which could indicate tumoral growth (but he hadn´t seen what it was like before either; she has had some liquid there for quite a while) so that sounded a bit scary. But the x-ray showed there was no major obstruction (which was Jenna´s fear). He sent us home armed with pain meds for the abdominal and back pain, enemas and anti-nausea stuff. It´s just always the same old thing. I guess it just takes a while for it to pass. With so much activity & distraction, Jenna was not as attentive to her health as she would normally be and now we are all paying the price - most of all, her. We are supposed to see her oncologist today since the ER Dr called him while we were there yesterday to let him know what was going on.
29-30 August 2014 Bruce has been on retreat for a couple days trying to bring his sabbatical to a close. Poor guy. It has been a most challenging time to try to have a sabbatical and get ready for a new job...I honestly don´t know how we´re going to step into the fall...
Jenna is miserable. She is throwing up, her abdomen is distended, she hasn´t eaten for days and we are just trying to keep her hydrated by IV. I had (almost) forgotten how sad & depressing it is to have her so ill...Ruthi & Dani have been wonderful and so she has been well accompanied, even sleeping in my bed at night the nights Bruce was gone!
Jordan meanwhile, has had 2 sleepovers in a row, one with 3 other TCK´s (so I know he got some sleep) but Sat night was a birthday party for one of his school buddies, all Spaniards and he slept nothing! He is very culturally both Spanish and teenager and truly feels that the best fun & conversations are to be had at night!
28 August 2014 Jenna woke up not feeling well and stayed in bed. It seemed logical that there would be a letdown after so much activity & stimulus for 10 days. Dani & I were busy cleaning the house and by lunchtime it was clear that she was more than tired. She had a lot of pain in her abdomen and it was radiating to her back like never before. We weren´t sure if this was a ¨good¨ thing in the sense of nerves in the area waking up or not, but it has not been any fun for her.
There was another surprise today late afternoon and that was that her dearest friend from university, who is Argentine, Ruthi, arrived today from Argentina for a month. I think in her state (Jenna), Ruthi is the only person in the world she would have wanted to see! Ruthi has just sat quietly by her side and is happy to just be here.
When I was at the hospital to pick up Jen´s nutrition for the next few days, I was able to talk to her endocrinologist who gave me the usual meds for her slow, stopped up system and vomiting (since we´ve regressed to that again). She is not super helpful but she is concerned. If there is no progress, we are to bring her to the ER.
21-27 August 2014 Life was crazy and full. Jenna felt great, albeit it tired since she really pushed herself going out to the beach and other places in Málaga with her dear friends and staying up way too late! On the 27th the last four left throughout the day and by evening it was just the 5 of us again.
Bruce and I got away for a couple days with our dear friends Alex & Amy to the country right after the bday party. The 7 girls had the house to themselves and Jordan went to stay with a friend. Bruce and I had time alone, time as a couple and time with Alex & Amy. It was good to be away from the busyness at our home but the quiet stirred up a lot of things for us that were necessary but bittersweet. Quiet has a way of doing that...We are both so tired right now.
20 August 2014 So the house it literally full of young beautiful, interesting young women. Tomorrow Bruce & Jordan are leaving on a 2-day backpacking trip! haha Good call, guys! There´s a lot of jetlag around here but we ate lunch together and then a bunch of them went to a nearby outdoor shopping place then over to the beach. Jenna & Justine are here and are starting the Lebanese dinner we´re going to have tonight. Mmmmm.
It´s challenging for Jenna to spend time with everyone and with so much distraction, it´s easy to forget to make health your priority....in other words, things slip through the cracks. But she´s taking her supplements and auto-immune therapy things and on TPN a lot of hours per day. I know she´s not getting the rest she needs but she IS happy and that means a lot. :) Happiness = endorphins = strengthened immune system!
Today is Bruce & my anniversary and we had a plan for tonight which fell through. We're going to do it next Wed instead and things should be a little quieter by then anyways.
19 August 2014 JENNA´S BIRTHDAY! And wow, what a day it was! Suffice to say here, she was greeted in the morning by her 3 besties from Málaga for breakfast and a song (see video), delivered roses, given a DVD with a compilation of well-wishes from friends all over, received 2 more friends, Carolina at 12:30 and Hannah at 4:30 and then after a trip to Malaga to see the view from the castle and take some pics, she came back to Saray´s Argentine lasagne, salad, bread & drinks, fresh fruit & amazing cupcakes & a sugarless, choco-banana soufflé made by Justine. We ate out on our patio with candles & it´s looking better little by little. The combination of friends and their unique backgrounds is so much fun...and Jenna is feeling very loved.
18 August 2014 We pulled off a huge surprise today; Justine arrived for 10 days, one of Jen´s best friends from university and Jen had no idea. Dani & I picked her up at the airport mid-morning and then had her bring Jenna her tea in bed. It was so cool! Jenna was completely shocked & happy & touched. I´m glad THAT´S over! Keeping secrets is hard on your nerves; I hope surprises are good for immune systems!
16-18 August 2014 We have been so busy in this recent period of time that I have barely written. Those of you who are also on facebook may have received some additional info but not to worry; it has been a busy and intense time both with our vacation days and these following days with friends of Jenna´s who have been arriving from various places since the 12th.
Jenna continues to be stable and has restarted up the TPN. She is still eating small meals and all seems to be going well with that. Her weight is up a bit. We saw one the oncologists on Mon and it was kind of a downer since (as is to be expected) he wants her to consider doing some chemo now that she can handle some food that wouldn´t compete with her Port. We have been thrilled to be going a different, positive direction with holistic, alternative therapies and Jenna has felt so good, why would we want to turn that direction now? While the oncologists feel it would slow down and lessen symptoms and prolong her life, they also admit they don´t know what her response will be or what side effects she will have (their are particular lists of side effects for each drug but it always seems to be a wild card as to which one you will get...
I had never realized that we all apparently have some cancer cells in our bodies but that a healthy immune system fights them off. While that is kind of scary, it also makes you realize how important it is to build up your immune system if it is compromised and give the body a chance to heal itself. We have been working hard on this in the last weeks...to receive chemo and kill the good guys along with the bad guys is not settling well with us. We know there are many different takes & opinions on this. Jenna felt a certain pressure from the Dr. to consider it. Even if you feel strongly some other way, when a professional gives you a good defense with his reasons, it is sobering. It wasn´t a very easy appointment to have to communicate we are going in a different direction. He still wants us to ¨think about it¨. But Jen is still convinced of the road she is on now and we are, too. (This was our first appointment with Oncology since we had started at Budwig.)
We still have to go to the hospital a couple times a week to pick up nutrition, do blood work, check in with the Endocrinologist, get check-up scans, etc. But it´s not the kind of medical schedule we had before, going to the hospital or the clinic all the time. That part is a relief. Short of emergencies that can come up, we´re down to 2x/wk right now. :)
We had fun on our outings for our vacation last week, spending 3 of them out all day: a beach, a lake with our team families and a mountain- river place. It´s not near the same as really getting away, but we had a lot of great talks and fun and got some sun, too. The last night we went out to a nice dinner and in spite of some issues we are working through as a family (why don´t these things respect our vacation week?!), we had a great dinner & a beautiful time.
That last day of vacation we all spent time cleaning & readying the house for the guests who began to arrive the very next day...
16 August 2014 Saray arrived from Argentina this morning and oh! what fun it is to have her here! We have been friends with her family since probably ´96 and for me it´s like a little piece of her Mom here with me!
In the afternoon, Betty arrived from Mexico and it is also such a treat because we are good friends with her parents, too. Betty reminds me a lot of her Mom and it´ special to have her here, too. The 3rd of this foursome (Jenna being the 4th) arrives on Tues. These are the 3 TCK´s that Jen has come to know and love in that special unexplainable way...and even though they have never lived close by one another, they have managed to develop deep bonds at conferences we have been to as families. It is such a gift that this is able to be happening. (Financially it is a miracle! THANK YOU to 2 of our churches who helped get the girls here and also to their Dad´s for donating mileage!)
11-15 August 2014 This is a week of vacation for us, a stay-cation really, so I will not be writing much unless something really important comes up. Jenna continues to do well, has continued to eat & drink and has only had a few bouts with vomiting. She will start her TPN back up this week, so that will be big - 2200 calories per day. But THANK GOD, she has felt so good during this time without TPN that I almost feel reluctant to have her go back on it! But she has lost 2 kilos (not very much considering!) and we want to keep things moving uphill.
10 August 2014 While Bruce, Jordan and I were at church, Jenna had the unfortunate experience of having ¨dumping syndrome¨ after ingesting (perhaps too fast) her morning supplements (liquid form). That led to more than an hour of vomiting, racing heart, sweating & hot flashes. Good thing Dani was with her.
The rest of the day was without incident although it seems to have left her a bit hesitant about eating and her morning supplements in general. There may be one new one she has added, glutamine, that she needs to start more slowly and build up towards. We are all learning & relearning...
Jenna stayed at home while the rest of us hit the pool for a while and that was good for us and refreshing. Tomorrow we start our mini vacation from home!
9 August 2014 Not much happened medically for Jen today but at 8am our dirt for the patio was supposed to be delivered. That is NOT good news for a 13-yr-old in Spain in the summer on a Saturday morning, but oh well. One of our teammates, Ivan, brought his 14-yr-old, too, and when the delivery was late and I returned from picking up some tools for a friend, they were sitting around looking lifeless. Sometimes this ¨making of men¨ is hard on us mothers. ;)
When the dirt arrived, there was lots of work to be had for all and everyone was busy for several hours!
8 August 2014 Dani took Jenna to the hospital for her Minor Surgery to get her new Port put in. Am I getting inoculated to these things that I feel free to send my 2nd daughter to accompany my other daughter to a surgery?! It´s getting to be such a not-a-big-deal that I feel fine about it. :) In the meanwhile, Jordan and I were working on the patio, scrubbing bricks and chairs and patio floors. Bruce was downtown working on his Spanish citizenship process.
My back has really been sore lately, especially after all this physical work on the patio (which I truly enjoy), so Jenna and I both took a power nap. Jenna says, ¨There´s nothing like anesthesia for a good nap!¨ haha
Bruce and Jen went off to get some more plants and met up with Tomás (our friend and plant consultant!) and his family, dear friends, Raquel and their girls. Karen y Kelli decorated Jenna´s hair with flowers they found around the nursery and she came back looking like a princess. :)
In the evening Jordan had a game and I went alone to see the 2nd half (it was a friendship match) while Bruce was painting the railings and window guards at home. Jordan spent the day with a friend and went off to his game with another teammate so by the time he got home, he was pretty spent. We all fell into bed.
7 August 2014 Bruce & Dani took Jen to her last morning at Budwig and she did lots of the usual plus some foot reflexology and her 2nd (ouch!) session of neuropathy. That is where injections are made all along her scars to unblock the cells´ communication in the abdomen. Especially across the mid abdominal line scar tissue can wreak havoc because of its disrupted normal function & communication.
The girls met some friends downtown and had lunch at a new organic restaurant and had a great time, coming home around 5pm. Jordan and I worked out on the Patio Project, continuing to clean the brick wall of cement residue and the patio floor as well. We also started cleaning our old white outdoor chairs and it took plenty of bleach, comet and elbow grease!
Jordan is incredibly sore today, mostly from preseason training and it´s definitely limiting his enthusiasm for the Patio project! Tomorrow he´ll go spend the day with a friend and finish up with a game in the evening. :)
Jenna´s new Port minor surgery has been scheduled for tomorrow morning. The area looks great; it has healed up very well. Hopefully, it will go as smoothly as last week when we were back within 3 hours!
We are finishing up this day with Bruce painting out front - railings & window guards and Dani is giving a hand at varnishing the brick wall. :) Tomorrow supposedly our dirt will arrive and that will be the last thing we´ll do this week on this Project! It´s time to give it a break! Then Phase 3 will begin and we´ll plant stuff, get a table & some lights and work on our mosaic! Pics to come!
6 August 2014 Dani took Jen again as Bruce had a meeting, Manuel was done with his part and Jordan and I were on for working on the patio today. Unfortunately, no one took MY picture working!
Jenna did various therapies today and started the immunotherapy which is a shot of some supposedly amazing stuff. She´ll take this whole round (a month) and they´ll do some very specific blood work before and after to see the difference in her immune system. We hope there will be a great change!
Jordan and I worked hard digging out a few inches of dirt and hauling it off to get rid of all the cement and junk that was in it and get it ready to receive the new (good) dirt later this week. Plus we wiped all the dust off the walls and attempted to clean the cement off of all the bricks without a lot of good results. That was frustrating but hopefully after they´re varnished we´ll enjoy our rustic look! Dani cleaned the patio floor (it´s an every day ordeal) with vinegar trying to get all the white cement residue off. It´s gonna take a few more goings over...
Bruce & Jordan are doing some painting this afternoon while it´s cooler although Jordan has to go to futbol practice. He is so sore from Monday he´s not sure how he´s going to run tonight! Here is Jenna´s contribution to Phase 2 of the Patio Project: spray painting our house numbers! haha The Next Phase will involve her more: a mosaic in tile on the wall. :)
5 August 2014 Daniela went with Jenna to Budwig and they did her various therapies. She only has 2 more days left! Manuel & Jordan were working together this morning while Bruce consulted with our friend Tomás on plants, landscaping and dirt. Tomás is a huge blessing giving us his knowledge and advice plus he took Bruce to places he knows & got Bruce a good price! :)
I was busy inside and out, cooking, cleaning, attending to things the guys needed, etc. After a late lunch they continued working and I was on clean-up. Dani left with 2 high school friends for lunch and horseback riding! She was so thrilled when her good friend Nuria called to invite her to go (for free!) as she had been praying for an opportunity to go. She has ANOTHER opportunity, too, with another high school friend, Marion, and she is so blessed!! It´s one of her favorite things.
Arnaud returned to visit Jenna in the afternoon and they had a nice time talking. Plus, he gave Jordan a ride which he LOVED! Hopefully, Jordan can go to France some summer with the 6 Dubi boys and Arnaud will be close by. :)
Bruce, Jen and I sat out on the porch for a while at dusk having a drink and talking about the day. One of the things that´s all of a sudden happening is that 3 tck friends of Jenna will be coming for a visit! This is a dream come true for them! More on that later...
Jenna´s special immunotherapy came via special mail today in a cold thermos from Switzerland. They´ll start her on that tomorrow at Budwig and then we´ll continue it at home. She is due to have her new Port put in this week but they haven´t called with the time and date yet. In the meanwhile, she is eating what she can and putting in a little nutrition at night via the J-tube.
4 August 2014 At Budwig in the morning with Jen. I´m putting some pics under Blessings to show a few more therapies I didn´t have pics of before or that she did for the first time. She is a bit weak after the fever and not eating much this weekend. Plus it is hot here and everyone is feeling less energetic. (except Bruce who is the Energizer Bunny). But we got her another nutrition to try with her J-tube and we´re trying that out tonight at a slow velocity.
The patio project is taking a lot of time and has become more involved than expected! (like most projects, right?!) Bruce, Manuel and Jordan (part-time) are out there under the hot sun and then I clean up late afternoon-early evening. Yesterday I was just starting to hose things down when Jenna´s friend from France arrived on his motorcycle. We were expecting him to pass through although we didn´t know when exactly. He is a friend from the church in Normandy where she was a nanny for a year and he is close friends with the Dubi family whom she nannied for. Well, he showed up with 2 other bikers from Switzerland and we had quite a time of it!! They are all Christians and ride for Jesus and to represent him to other bikers. When I saw their shirts I said we have a good friend here who has a biker ministry here in Spain. When they asked his name and I told them they said, ¨That´s who we´re going to spend the night with tonight! Then Wed we leave for an international rally in Portugal!! haha It´s a small world. We called Juan and he came over to meet them and we had a great time talking in French, English and Spanish. :) When they left, some neighbors came out to take pictures of them!
Later, we received some dear people (from New Zealand) who used to live here and ran Villa Isabel, YWAM´s training & hospitality center nearby. We hadn´t seen them for 11 yrs. It was an honor to enjoy some time with them and have encouraging conversation until dark at 10pm.
Jordan started pre-season training today from 7:45-9:30 and needless to say, we were all wiped at the end of such a day!
3 August 2014 Restful day for Jen with no fever. She's eating again although not much. At home with family...Bruce, Jordan and I went to church, Jordan went home with friends to spend the afternoon and we were with the girls. Restful! Bruce went out to see some friends on his own around 8:30pm. I stayed back knowing we have a big week ahead of us...Praying for more progress for Jen as we head into the last intensive week at Budwig.
Dani has had lunch with a friend and is going out with another friend to do some salsa dancing tonight. She is happy! :)
2 August 2014 Jen had a rough night and seemed to have had more fever. She was rather weak & dizzy through mid afternoon but then she started eating some and still doesn´t have a fever at this writing (8:30pm). I was a bit concerned because of the infection in her Port but she´s had that for more than a week with no fever and has been on antibiotics for at least 10 days already. Hopefully tonight will be better. She hasn´t moved much today...
Bruce & Dani took several hours to get away at our favorite botanical garden and that was a great time for their relationship. They got to have a nice lunch outdoors there, too. :) I let Jordan sleep in to his heart´s content and he´s been so cheerful today. :)
We had some time at the pool late afternoon which we all enjoy (except Jen who stayed home). I was glad to have a day without the patio project going out front and got the dust cleared out for the weekend. :)
1 August 2014 Is it really August already?! Dani took Jenna to Budwig Center this morning while I held down the fort here in the midst of the patio project. For those who have done reconstruction and/or remodeling in their home, you can appreciate the dust & work of this. :) The house, laundry, meals, medical finances and the blog kept me plenty busy!
Jenna came home with a fever and it looks like it was from doing the full body sweat capsule on such a hot day. She laid low most of the day. I talked to the Dr. there and already after a nap and some paracetamol, her fever has gone down. Obviously, it hasn´t been a good day for eating but she´s trying to keep the liquids down. We´ll see what tomorrow brings...
Jordan got to go out to lunch and to the movies with a friend after putting in a couple hours´ work around here. We´re all tired tonight...
31 July 2014 Yesterday Jen got her old Port removed but the Dr said she would have to wait a week or so to let the area heal before getting the new one put in. Sometimes the communication around here is not the greatest. ;( This means another week without nutrition! BUT here´s the good news...
She is eating by mouth so much better! It´s amazing but she has no more problems with esophageal spasms, vomiting or other pains influencing her ability to eat. She is still cautious about what she eats, can only eat small amounts at a time and listens to her body about what it wants (fruits & veggies mainly) instead of focusing on hyper caloric foods to gain weight. (It´s getting really hot here now and so NO one wants to eat much anyways.) She is also drinking a lot more AND is able to drink and eat at the same meal! THIS IS ALL AMAZING PROGRESS. We are praising God for this healing!
The pain around her J-tube has diminished markedly. At the Budwig Clinic they have done some things for pain in the last few mornings and that seems to have helped. Then again, I like to believe that the many specific prayers for this are really paying off! She feels much less pain for no apparent reason.
Around 6pm we went to the hospital to see the endocrinologist and she couldn´t believe all that we told her. We hadn´t seen her for a while and she didn´t even know the whole story about the Port issues. She´s up to speed now. But what she MOST liked was Jenna´s most recent blood work that showed great improvement from the last one. She has no anemia and most levels of everything else are in normal ranges!! Of course, this bloodwork was from when she was on the TPN and doesn´t reflect the last week without it. But amazingly, she has only lost 1 kilo in all this! Besides, she feels great and has more energy. Do we even need to go back to TPN??
Jenna has been using her J-tube at night to slowly pass some nutrition through and see how her system responds. So far, so good. The Endocrinologist was very surprised by that, too, and gave us another nutrition more specific for the J-tube that we can use.
After starting off the day rather sad because we had to say good-bye to Becca & Katelyn, it ended up completely victorious and Jenna came out of the hospital glowing, so happy with the great support and thrilled to have surprised the Endocrinologist with the good progress!
On the home front, Bruce & Manuel continued working out front, dealt with a plumbing crisis when a tube was struck accidentally and no one could figure out how to turn off the water until our neighbor suggested it was perhaps downstairs in the parking garage of the community - go figure! That worked but poor Manuel who was alone when this happened and had a big scare. Dani & Jordan were able to help by calling a local plumber and getting Manuel into the garage, etc. As with all works of this kind, there is dust & dirt everywhere and I spent a couple hours cleaning to restore our sanity!
Thankful for Dani who, while Jen and I were at Budwig for the morning, stayed home to do some cleaning and make all of us lunch. Jordan helped Dad & Manuel for a good while outside.
30 July 2014 Today Jenna gets a new Port at 3:30pm. This is a minor surgery. She took the morning off from Budwig since we´ll be at the hospital all afternoon and it´s B & K´s last day here. They took off to the beach for a while this morning and will have lunch down there in a typical beachside restaurant.
On the home front, Bruce started Phase 2 of the front patio project with our friend Manuel. We have to fix up the unsightly walls and then we´ll build up a planter around the edge where the old pine hedge was contained. There is NEVER a dull moment around here!!
29 July 2014 To Budwig again for the morning and Dani took the girls out for an Andalsian breakfast: toasted bread with drizzled olive oil, freshly grated tomato and some smoke-cured ham. :) In spite of all Jenna´s needed to do while they´re her, we´re all glad Becca & Katelyn have been able to do & see as much as they have.
We had another guest, Alan, arrive from Madrid on the train for a quick 24-hr visit. He is Asst. Pastor at the church where Bruce grew up and his family has been visiting other workers in the Madrid area. We´re glad he was able to get away for a day to be with us!
Bruce took him to see the castle downtown and then we did a big asado for lunch. Jordan´s friend was here, too, so we were a full 9 around the table today. We all enjoyed the meat and salads. Didn´t finish lunch til 5pm! An hour later, Bruce took everyone Alan and all the girls except Jen and I to a little Andalusian pueblo, Mijas. It´s a really quaint place to see and close by. They all enjoyed it and Jen and I had a nice & unexpected time alone to talk. Then we both got time to do some organizing (her in her room and me on finances).
Jordan went to the beach in the afternoon with Ale´s family and came home later. We ate a light dinner after everyone regrouped and then had a hilarious hour of Pictionary before going to bed.
28 July 2014 Killer medical day...but everyone helped. Dani is now done with her dance intensive so she drove Jen, Becca & Katelyn to Budwig and that took around 4 hrs. Becca & Katelyn did some sightseeing with 3 of Jenna´s friends who wanted to practice their English and they had a great time.
I got to stay home and get done some much needed errands & cleaning. It´s great having others to help with this big commitment to Budwig right now. I can´t tell you what a stress reliever that is.
Jenna did some of the regular therapies she´s been doing and today they added oxygen therapy where they filter oxygen right into her bloodstream. Cancer doesn´t like oxygen-filled environments, so Bye-Bye!!
I took Jen to the hospital for an oncology appointment and supposedly to get her new Port. In reality it was just to set it up. But the Dr looked again at the Port which is looking better. Since her J-tube is really the worst pain, she called in a GI surgeon to look at that and he took some time to examine her. poor thing cried from the intense pain of his pressing the area. He said something is wrong because of the pain she has but there´s no sign of infection, everything feels ok and the x-ray showed that it´s in it´s proper place. He sent us to do a sonogram but didn´t feel hopeful that it would show anything new. Fortunately, we were able to do it right then and do some bloodwork for the upcoming Port minor surgery. Four hours later, exhausted, we got home.
I got to chill out & the girls did, too. Bruce went to a futbol game with a friend and got home at midnight. Jordan was with a friend who lives a few blocks away and ended up spending the night over there with Ale.
27 July 2014 All 7 of us went to our former church for 12 yrs downtown and were overwhelmed by their love. They have been amazing in their prayers & concern all these months and were SO happy to see us all...especially Jenna today.
Had lunch and a sisesta and hit the pool this afternoon. Jordan has a friend over who will spend the night. The girls went out down by the beach to meet up with friends and if it weren´t for Jenna´s pain in the J-tube area and shooting liquids into it, things would have almost seemed normal...she is walking slowly and slightly hunched over with the pain in her site which we will investigate further tomorrow.
We´ll be at Budwig in the morning and at the hospital in the afternoon to get a new Port and have an appointment with an oncologist. Hopefully we can also see a GI surgeon to investigate further the pain emanating from her J-tube site.
26 July 2014 Jenna is feeling a bit weak today because she´s missing the 2200 calories that her TPN gives her. She´s been able to eat small amounts today and keep liquids going in through her J-tube. She´ll have to just rest more this weekend until we can get this settled on Monday. Her Port site looks a little better today but is still red.
Bruce spearheaded one of his infamous ¨family projects¨ today and before lunch he cut down all our pine trees which lined our front patio. The rest of us hauled rocks, filled 15 bags with pine needles & bits of branches and helped get the hedge apart to be able to haul it through the door and get it into the back of the van. Thank goodness for Becca & Katelyn!
This week someone will come to fix the ugly wall & build up a planter where we´ll begin to plant some other things. Let´s see if I can keep anything alive and let´s see if Jordan doesn´t kill anything with his soccer ball!
We enjoyed an amazing asado (barbecue) for a late lunch and after a bit of siesta the girls are headed to the beach and Bruce, Jordan and I for a dip in a friend´s pool. A lovely & productive Saturday. :) It´s been so nice to NOT have to be at a clinic or hospital today!
25 July 2014 At the Budwig Clinic again today and still concerned about Jenna´s Port which seems to be growing the same kind of flesh out of the hole. It´s not easy to fit all of this in and find available Drs when we need them. She has also been complaining about pain at the J-tube site which we had looked at on Monday as well...they saw no infection but it still seems strange that she has developed pain there in the last week.
This morning she is doing various therapies - some repeated from yesterday plus a Vit C IV. She will also be receiving a variety of therapies (IV or shots) for strengthening her immune system.
One of the things we will be working on is the interplay of emotions on illness. However, we have chosen to use a trusted friend with a faith-based approach as opposed to the psychoanalytic approach offered at the clinic. Jenna has been well aware for a time that stress has played a big role in her life (too big!) and we need some time to focus properly on this area. This is not scheduled yet but please be praying for this significant aspect of healing.
Late in the day: We went by the hospital after finishing at the clinic and it turned into a LONG day; we didn´t get home til 5:30. Between checking in with an endocrinologist about her J-tube pain which meant an x-ray, contacting the insurance co and going back up to see the Dr again we only ascertained that there is no visible infection and that inside the tube is still in place.
We went by the nurses´ office/station re: her Port and that´s where it got more complicated. It was the same oncology nurse that had looked at it on Mon. She didn´t want to just cut & burn it again nor did she want to put the pin back in. She sent us to the ER to have a Dr look at it. The Dr there didn´t like the looks of it and didn´t want to re-pierce it and so it took a long time to contact her oncology Dr (we called for over an hour, then the ER Dr called all 3 of them and spoke with 2 of them). In the end, they have kept her on the same antibiotic til Mon, redressed it without putting the pin back in and since she did NOT want to check into the hospital to get another peripheral vein pierced for nutrition (this requires monitoring by the nurses), they sent her home until Mon. So, she´s surviving this weekend on the little she can eat and the liquids she can swallow or put in her J-tube. For a couple days that´s fine but she´ll probably lose a little weight...but she was adamant about not being admitted for the weekend. It looks like on Monday, they will have to put in ANOTHER PORT on the other side and abandon this one for risk of infection. Then they´ll get the TPN going again. Sigh.
24 July 2014 First day at the Budwig Clinic. Since chemo was no longer a viable option, we have been quite relieved to actually not have to go through with it! Jenna is so excited about doing good things to her body without side effects and we pray this will also be successful in building her immune system & squelching any remaining tumors.
There are a variety of alternative therapies available to her without having to eat. Today she started on a hyperthermic body capsule which swelled with temperatures up to 46 degrees celsius! (114.8F) She was sweating in there for an hour, the idea being that cancer cells don´t survive in temps higher than 43 and also to sweat out toxins.
She also did a pulsed magnetic therapy which gives small shocks to shock the immune system and prompts cells into healthier states & activity.
She received an IV full of homeopathic remedies for her situation and I can´t tell you how great it was seeing her receive something non-toxic and so good for her. ;) She did some Biocatalytic Breathing; special inhalation of essential pine oils which play the role of ¨super-transmitter in cell metabolism, reinforcing cell breathing¨. Since cancer dislikes oxygen, this therapy plus Oxygen Therapy (which she hasn´t had yet) will help oxygenate her system.
They also took quite a bit of time to ¨unblock¨ her scars on her abdomen. This Neural Therapy aims to stimulate cells to behave and communicate in a more healthy manner. With scar tissue, they don´t do that and the healthy communication in her abdomen is important to her healing. The Dr injected little bits of ?? into her scars which will break up the scar tissue leaving it more supple and prompting the cells to respond properly throughout her abdomen. This was painful to watch and of course, even more painful for Jenna who received probably 50 pricks into her belly scars! :(
All of these things are new to us and to many people, they are still controversial. Yet there are some amazing documented statistics, studies and testimonies from people healed through alternative means. As she regains her ability to eat (she is slowly eating & drinking a little each day), there will be a lot more options open to her. We are excited to move towards healing with ¨God´s good food¨ and ask for your prayers in this journey.
Jenna was pretty tired after all that and we all rested in the afternoon after a late lunch. But the girls were able to go out later for a walk on the beach and then we all ate dinner together - topped off by root beer floats since Becca had brought Jordan two 6-pacs of root beer! He put enough in the fridge for all of us and was generous to share! What a treat!
For those interested in more information about where Jenna is being treated or the various therapies being used, here are a few helps:
Budwig Center, Málaga: http://www.budwigcenter.com
Biomedic Center, Málaga (Budwig & Biomedic work together): http://www.biomedicenter.com
Biocatalytic Breathing: http://www.biomedicenter.com/biocatalytic-respiration/
Neural Therapy: http://www.neuraltherapybook.com/NTdefined.php
Hyperthermic Therapy: http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia
Pulsed Magnetic Therapy: http://www.doctoroz.com/videos/pulsed-electromagnetic-fields-how-they-heal
23 July 2014 We received Becca and Katelyn today, 2 of Jenna´s university friends who have come for 10 days. It´s so good for all of them to have such a special opportunity to be together and I feel so touched that they would pay their way to come be here with her. ;) They won´t have much time to sleep off their jetlag tomorrow as we start at the Budwig Clinic tomorrow morning!
B & K brought some very special gifts & notes from other friends and that has meant a lot to Jen. All of this happiness brings lots of good endorphins to her system and we all know that is beneficial to her overall immune system!
22 July 2014 Trying to catch up on medical things, the house, laundry and all that...We are about to begin the ¨natural phase¨ at the Budwig Clinic and are making arrangements for that. We also need appointments with Jen´s regular doctors. Jenna has 2 university friends coming from Canada & the US for 10 days to be with her and we are getting a room ready for them. We feel so excited & blessed that she has such special friends who are willing to come all this way...
In the meanwhile, the van started tweeking out & we had to put it in the shop and various things around the house need some repair. Bruce is also working through his citizenship & buried in paperwork. Life goes on in spite of our health priority! Fortunately, Bruce is here now to help with all of that ¨life¨! :) Dani will finish her dance camp intensive this week and will then be more available as well.
21 July 2014 Last night we had a little scare as we were getting ready to go out to dinner for our last night. Jen had had a blister right above her port (which has to be kept super sterile) and it had burst sometime during the day under the bandage & tape. She was scared liquid had seeped into her port. We arranged to go to a clinic, called our insurance, got there only to be told we had to go to the nearest hospital (almost an hour away). We called her oncologist (it was Sunday but when you need him, you need him), described it over the phone and he derived that it would be ok to wait 24 hrs til we were back in Málaga. That was a temporary relief although I was a bit unsure of how he could make that call via the phone. Anyways, if she got any fever or any other symptoms, we were to go to emergency.
In the meanwhile, my back was on fire & while they gave me some cream at the hotel, I was in serious pain all the way home & not very much fun! We hung by the pool (mostly in the shade by necessity) for a couple hours before heading back home mid-afternoon.
When I took Jen to the hospital both to get her next few days´ of nutrition and to have her port looked at and changed, they found another disconcerting thing: when they took out the pin, there was some kind of flesh coming out and neither the oncology nurse nor the oncologist had ever seen this before. (Why is my kid always the 1 in a million with her body??!!) They finally took us to a nursing station and decided to cut it off, cauterize both the blister and the spot on the port and then put a new pin in. OUCH! I really felt for Jenna...just when you think things are going calmly, something comes up. We were exhausted by the time we left and got back home around 8 or 9 pm, sunburned, tired and a little shook up from the unexpected little procedure & a bit anxious about potential infection. She´s on antibiotics just in case.
I went to 2 pharmacies to get something for my back because nothing was helping the terrible pain I had there. Apparently, I got a 2nd degree burn there and I have never had such a burn in my life. I got some cortisone cream & intensive rehydration cream, lay on ice before bed but still could not sleep until around 4 am. Lesson learned.
19-20 July 2014 Had such a great time this weekend...we could walk to the beach from our hotel, there was nice, cool air so it wasn´t too hot (which is probably why we all got burned!). Loved the waves & the water temp wasn´t bad so we enjoyed that a lot (except Jenna who can only get her legs wet) :( We enjoyed a great breakfast which Dad said was breakfast-lunch-merienda and had to last us til dinner! (we did buy some snacks & drinks) We could go to the spa for free so we did that, too; especially Jordan & Dad who went twice a day! Talk about waterlogged! We enjoyed the pool, too, although we mostly hung out at the beach.
We enjoyed talking, laughing, being together, reading The Call by Chambers and eating. Jenna was limited and we felt for her. But she did enjoy getting away, too, and took advantage of all she could. She was a great sport.
Did I tell you that we had booked a 4 star hotel to be sure to accomodate Jenna´s needs and that through some mistake they moved us across the street to a 5 star? Haha It was NICE and we were super blessed by that. The whole weekend we are sure we looked like campers who landed at a 5 star hotel! Jordan (13) reminded us how ¨embarrassing we are¨!
We had an awesome last dinner at the fishing port of Chiclana...it was a fresh, fish restaurant with some kind of fishermen´s social club attached. So if you want good fish, you should probably go where they go, right? It was not fancy but so typical, loud and delicious! :)
18 July 2014 We did it! We actually packed, drove 3 hours and landed in the beautiful coastal area of Cádiz. We have a lovely hotel that is clean and easy for Jenna to get around in with her pole. We have great access to the beach and the pool and even though Jen can´t take advantage of everything, we can be together. Such fun to have this weekend spread before us!
It was really the first time to be in public with the pole & nutrition and we all felt people looking at her. It is not near as discreet as the NG tube and portable smaller, nutrition & pump that she could hide in her purse. The pole seems to shout ¨serious illness!¨ and she didn´t like it at all.
In her 6hrs off of nutrition, we will gauge the activities to the ones she can only do without it (the beach) and ones she would like to do without it (eat dinner). It´s different for us to have these limitations but this set-up this weekend is very accommodating. We are all tired & these are our first days of rest in these 7 months of battle (except for Bruce who has had some sabbatical days).
Yesterday we got some time on the beach in the waves and light sun and later on had a great Italian meal. We´re looking forward to this full day here today...the guys got up early to go to the spa...they´ll probably want to go back to bed after that! Then we have to eat a big breakfast cuz we have to make it last til dinner! (We´ll get some snacks to hold us over.)
17 July 2014 Ok, today my husband is driving me crazy! He´s trying to do everything in one day that he hasn´t done for a month! Why doesn´t he get that this can´t be done?!
Kudos to Jordan who took his final exam for his online English class today. It has NOT been easy to study this year and especially not in the summer since we had taken a break from it and had to finish after school got out. Dani got to ¨Proctor¨ the exam since she likes to play teacher. :)
We´re getting the attic area ready for guests since Jenna has 2 APU friends coming for 10 days next week! We feel so blessed that even though her illness has kept her from school this year, that several are coming here to spend time with her. Two more are coming in Aug/Sept. So cool!
Jenna had her first physical therapy appt today and got a lot of knots built up after a month of laying around at the hospital worked out. She got some light abdominal exercises that she can start now to start rebuilding her core post-surgery. She´ll have to wait to do anything more serious until 2 months have passed from the yeyunostomy.
Had to take a cooler & a suitcase to the hospital today to pick up 4 days of nutrition & a month of supplies! Took Bruce with me to introduce him so that he can do some of the pick-ups. Good strategy, right?
16 July 2014 We are moving ahead with naturopathic therapies for Jenna. Next week we will start at the Budwig Clinic and probably spend 3 mornings a week there for a month and see how she does. She is actually drinking some water, juice and tea and is even taking some food off of our plates! We´re not sure how that happened - except that so many are praying for her intestinal tract to normalize. :) May it continue!!
Bruce was a zombie all day as he couldn´t sleep last night, poor guy. Tonight he should sleep great after running, doing stuff around the house, receiving a visitor and hanging out with us. He took Jen to the hospital today and while we were talking in the living room, he fell asleep right in the middle of the conversation! haha The girls met some friends at the theatre and saw a movie and when they returned, we caught up in the cool of the evening on the porch. Jordan ¨put Dad to bed¨ haha as he was so out of it! The rest of us went to bed later.
15 July 2014 We are all THRILLED that Bruce is home and we spent a lot of the day talking about his trip, losing his Mom, the memorial service, etc. as well a many special people he got to see & all the encouragement he received about our situation through them. He also was so touched to hear many special things about his Mom - some that he didn´t even know!
Between various things (studying English with Jordan, Dani´s Phys Therapy appt, laundry & unpacking for Dad), we talked and enjoyed being together - and laughed a LOT. We are happy & encouraged this week & keep pressing forward one day at a time. The kids presented Dad with a collage of welcome with photos they had found from a lot of different eras & he loved that.
Sitting out on our porch and having a light dinner was awesome in the cool evening air. Being together is the best!
14 July 2014 Encouraging appointment at Budwig Center, a holistic, alternative medicine center for people with serious diseases, especially cancer. Apparently there are many therapies that Jenna can take advantage of without being able to eat & drink. Therapies that target cancer cells & which environments it thrives least in: sugarless, oxigenated & temperatures over 43 degrees centigrade.
Thankful for a great situation for Jordan this weekend, that Bruce arrives tomorrow & for an encouraging meeting today at Budwig Clinic. Thankful that Jenna is stable & enjoying her (limited) life at home. She is starting to drink & eat a few things. This is awesome!
13 July 2014 Quiet day. Stable is good! Quiet is good. Quiet morning & went out to lunch with the girls (Jordan was at his friends´). Poor Jenna could only order water but she enjoyed being out. Looking at the menu in the Italian restaurant, she commented, ¨Wow. Serious food porn.¨ She does have a way with words. haha.
12 July 2014 Today Jordan took off with friends to a lake; everyone says how great a time he seems to be having! It´s true...and also a blessing. I´m super grateful to have so much help to keep him busy at this time. :)
The girls and I basically layed low today & enjoyed a visit from Martin around midday. I wasn´t feeling great and stayed home while the girls went to some Japanese gardens during Jenna´s time off from the nutrition.
Jenna loves being at home. It´s so great to have her here. She is stable & is managing her nutrition well.
11 July 2014 Had a special time with our nurse friend Catherine. She has been like an angel to us, helping me sift through medical info, options, definitions, how things work, oncology, how to help Jenna, etc. Her 30 plus years of experience as an oncology nurse has been such a blessing to us. Today she unexpectedly - and yet carefully & wisely - showed us another gift of hers: a gift of science where God gives her special images of people´s tumors. Similar things have happened to her since she was a child. The Lord showed her where there are 4 spots in Jenna´s abdomen - she even drew what she saw. She felt this was given to enable us to pray more specifically for Jen´s exact situation. (more in Prayer Requests & Blessings).
We are really missing Bruce. We all can´t wait for him to be home and are praying a lot for him as he heads into tomorrow´s 2 services; lots of people & lots of emotion.
Had to work a lot with Jordan on English as we are nearing the end of a semester in his online course. We had a Skype with his teacher for an oral exam and are getting ready for next week´s written course exam. It´s a lousy thing to have hanging over our heads right now but it is what it is.
The girls went to the beach for a while after 6pm when Jenna had her rest time from the nutrition. She can only be ¨unattached¨ for 6 hours a day; she is choosing 6-12pm. It is such a relief when she can move around without any tubes...
10 July 2014 First full day at home. We all left Jenna sleeping and went off to different things: Dani to dance camp intensive at 10am, Jordan to a water park with friends at 9:30 (a real stretch for him!) and me at 10:30 to go to the hair salon. When I returned, Jen and I made an appointment at a natural health medical clinic for serious illnesses for Mon; we´re looking forward to that.
I had to go back to the hospital to get 4 days of nutrition today and more supplies. This is going to be a bit restrictive...I have to go on certain days and in certain hours.
The highlight of the day (and of the week!) was a gathering of 20 young people at 8pm to pray & worship. It was an incredible time and blessed us deeply. There were lots of special words & prayers and lots of tears. We are all blown away by the outpouring of love & compassion by so many. I pray God will reward the faith of these young people who have cried out to God for months on Jenna´s behalf.
Jordan came home at 11pm (thanks Chandas and Pringles!), tired & happy. We all got to share about our day and fell into bed, blessed.
9 July 2014 I went to the hospital at 10am and the endocrinologist had already been by to tell Jenna that the nutrition would be ready around 3pm. In her determination to ¨be free¨ she told me that she wanted to leave by ¨alta voluntaria¨. They had already been stringing her along and all we needed was the hospital pharmacy to confirm what time they would have her nutrition ready - and since we live 10 min from the hospital, why wait there?? I told the nurses of her intent and things changed in a hurry! They came up with a check out really fast! haha So we had her home by noon and were we ever happy! It was such a relief to have her home with us I can´t even express it.
Such a happy day! Dani helped Jordan with some English work online and I went to the hospital pharmacy to pick up supplies & nutrition late afternoon. We had some dear friends visit & that was precious to us. All 7 from this family made a big effort to see us in spite of their own grief process at losing their dear Rebecca (the 19 yr old I wrote about earlier). It was bittersweet sharing but we were blessed by their love.
We got to watch Argentina-Holland at 10pm and fortunately for us, Argentina won in penalty kicks!! Wow. We had to stay up tip 1am to see it all but it was worth it! All our Argentine friends are so excited about this huge victory - and on Argentina´s Independence Day no less!
8 July 2014 The pump arrived and they showed Jen how to use it (they´re all similar) but at this writing (8:45pm) I´m still not sure if she´ll be home tonight or not! There are still some pending details with paperwork & the hospital pharmacy who will be making her nutrition to spec. Sonia stayed with her all morning and Lidia went by, too. Dani has been with her all afternoon.
I had the great blessing of having a friend offer to help me clean the house in preparation for Jenna´s arrival and I was thrilled and totally grateful. Tara worked for 4 hours and everything looks so good! I cleaned, too, and although there are some areas still to be done tomorrow, all the areas Jenna will be in are good. She needed a sterile table for doing the nutritional changes so I have scoured a plastic table with bleach and bleached a clean sheet to cover it. It will also be covered with disposable sterile cloths. All of this sterility makes me nervous! O Lord, please protect Jenna from bacteria & germs in this house!
9pm Just got word that Jen has to stay one more night. Bummer! Can´t wait to have her here tomorrow!!! Dani is sad and Jenna is mad...Watched a sad game between Brasil-Germany where Germany literally annihilated Brasil in a 7-1 victory. So sad for the the hosts of the World Cup and a country where futbol is everything..
7 July 2014 It´s still unsure if Jenna will be able to go home tomorrow. The new pump that she is to take home is not here yet. However, the Head of Endocrinology spent a lot of time with her in the afternoon going over all the details of TPN and was really pleased at Jenna´s understanding. I spent some time with her in the morning and took Jordan back for a visit in the late afternoon. Dani was there in the afternoon and Sonia came to spend the night with Jen. Jordan and I struggled through some online English and he is pretty determined to convince me that he doesn´t have the emotional energy for it this summer! (That makes 2 of us!) We miss Dad...
Thankful for Sonia who is spending the night with Jen. :)
6 July 2014 Dani took Doug down to our former church in downtown Málaga and he spent the afternoon with our dear friend Emilio who took him around to see some things. He loved it! And he loved Emilio! (Who doesn´t?!)
I spent some time with Jen at the hospital in the morning and then met Dani at home for lunch. She went back to accompany Jen while I rested. After going back to the hospital and meeting up with Doug again, he prayed for Jen one more time and said good-bye to the girls and I took him to his house where he will use the evening to prepare for his time in Africa. Tomorrow at 9am I´ll take him to the airport.
I picked up Jordan and had to tell him about Grandma. He has a hard time understanding why all these things happen to us. It certainly doesn´t feel fair. I feel completely inadequate to help him navigate these huge issues at 13. I really need the Holy Spirit´s discernment and all the Mom´s intuition in the world...He was so sad that we didn´t go back to the hospital as I intended but stayed at home. The girls are receiving the Falcos, long-time family friends from Argentina, at the hospital for a visit. Hopefully, he´ll be up for visiting his sister tomorrow...
5 July 2014 I took Bruce somewhat reluctantly to the airport by 10am. I hope he is able to see his Mom one last time but if not, I am sure that he has loved her so well and told her all that is in her heart in the last months that she may feel peaceful enough to go and not wait for him.
I took Jordan to a friend´s house (thanks, Chandas!) and Doug to the hospital. We had a good long talk and prayer time. There are so many things to think about...how do you balance having expectant faith for a miracle and yet be realistic in a grief process when you don´t know what´s going to happen? How do you spend your time? Do you plan? Do you say good-byes? We´ve agreed that only the Holy Spirit can guide in this unique time. He is the only One who has a clue what´s going on! We must be completely dependent on how God is speaking in this time to each one of us. Another good thought was the distinction between having faith in faith and having faith in God. It is easy to think we have to ¨have enough faith¨ to get what we hope for but if it were about that it would be dependent on our effort, our faith and not on God Himself. That was helpful for me.
Doug took Dani out for lunch while I stayed with Jen. They ended up staying out til 8pm! She took him souvenir shopping & they had a great time. At 4pm or so, 2 friends came to spoil Jenna and that was so neat to see. They brought stuff to do a pedicure & manicure, massage & face masque. Wow! She felt so happy & loved & pretty. :) Gracias, Sonia y Cristy! We had good conversation about many things: faith, healing, grief, death, etc. It has really been a sacred time.
Dani took Doug over to his ¨new house¨ then went back to the hospital. Jordan came home for some things to sleep over at his friend´s house and the Pringles sent us homemade pizzas again. Wow. Thankful for so many things...
I got an e-mail from Bruce´s sister that Grandma passed into heaven at 5am California time while he was traveling. While that was disappointing it was not unexpected & Grandma is where she has longed to be for a long time now...there is still, of course, our earthly longings & sadness. Here is my tribute to her that I wrote a while back:
http://www.alifeofinterest.com/2014/03/dear-grandma-have-i-told-you.html
4 July 2014 Last night Bruce came to bed at 3am after picking up a dear friend and pastor of a church who is here to visit for 3 days on his way to Africa. The timing is a bit complicated especially now with Bruce leaving but we´re making a plan and Doug is sensitive & only desires to be a blessing which we´re sure he will be. He and the church have stepped up in a great way for our daughters since they´ve been in S. California and have given much practical support that we as parents are so grateful for (the girls, too). I have no idea why they´ve been so especially personal & supportive but we thank God for that.
Today Bruce took him to churros for breakfast, a meeting for NA partnerships and to meet our teammates the Ludis. After that, they spent most of the afternoon at the hospital talking with the girls and I. Doug is helpful in helping us navigate the torrent of difficult questions that are racing through our minds & hearts.
Jenna had a significant visit with an old time friend and former youth pastor of hers, Samuel. Such a great guy. One of the things he said to her has really struck her and she´s holding onto it: ¨Just because you live each day as if it were your last doesn´t mean that you are preparing to die. Living in the present is the closest thing to heaven because in heaven we will continually live in the present.¨ I thought that was pretty profound.
Jordan has been to the beach today with the Ludis and we all met up at the hospital at 10pm with pizza to watch the World Cup game (Brasil-Colombia). These latino countries are hard for us to decide on in that we have friends from all of them and wish they all could win! So fun to watch that together. (I think Doug was asleep through the 2nd half due to jet lag). haha We also talked with Bruce´s sister by phone and both Jenna & Jordan were able to say their good-byes to Grandma. It was such a semi-sweet evening.
Almost completely forgot about the date...Doug reminded us & mentioned how non-existent the 4th of July is outside the US. We have been outside the US so long that we even forget! It´s amazing how powerful commerce is in not letting you forget about an upcoming date...
3 July 2014 Bruce went to the hospital mid morning and I am getting some quiet time to write at home. :) We´ve had to talk with our teammates here and some close friends about these recent important conversations. We also have Bruce´s Mom on our minds as she seems to be in her last days. How can all this be happening at once?? Thankful for Donna, Bruce´s sister who is caring for his Mom and feeling badly that we couldn´t be with Grandma this summer. Of course we have no idea about when something could happen and our situation here now is complex. Bruce was just gone for a month and we are not anxious to let him go anywhere. We can only trust in God´s timing.
Jenna told me this morning by phone that the Endocrinologist said she won´t go home til Tuesday. Bummer. But they have a plan for her training: she will be changing her own nutrition under the nurses´ supervision over the next few days. She is reading the manual & getting any questions ready. The new machine - infuser pump - should arrive today and they will switch it for the one they have been using so she can be practicing on the one we will actually take home. On Tues she will have a ¨test¨ by Dr. Almeida, head of Endocrinology (a wonderful, teddy bear of a man!) and if she passes, she can go home! So I think we will feel confident by Tues about being able to manage the TPN. Thankfully, our insurance ok´d all of this and everything is falling into place.
We got a phone call from the hospice nurse that Grandma is indeed in her last days. She has not eaten or drank since Monday! So, although the last thing we want Bruce to do is to travel again, it´s the right thing to do and he spent time this afternoon working out some flights. He´ll leave Sat am and return Tues the 15th. What a week.
2 July 2014 No parenting book prepared us for this day. No one can teach you how to talk to your kids about death; at least no one really taught me. Bruce & I went to the hospital in the am and talked with Jen openly about her situation and probabilities and what her wishes regarding chemo were. We were all in agreement about quality of life and looking into the Budwig Clinic, a naturalist healing center for cancer patients. We talked about how to talk to Jordan especially and planned to all meet as a family later in the day when Dani was back. We also had a 7pm appt with Dr. Ortega, Jen´s main oncologist and a guy very latino & endearing in his communication style. We were anxious to get his input.
So we talked together as a family about the new realities which the last week has revealed: 1. the surgery for the J-tube revealed that the cancer is growing (although they didn´t take a biopsy so we´re not 100% certain that it is cancerous but the surgeons are very experienced in this & it makes sense since it´s been 4 months since her big surgery) and 2. her only nutritional option at this time is TPN by IV and the risks of infection are much higher. Chemo is NOT an option in conjunction with TPN.
We spoke about how to confront this new reality and our need to respect one another´s process & coping mechanisms. Together we want to walk in faith & hope in Christ while being honest about our emotions - sadness, confusion, grief, fear, etc. This will be a learning process for us & we pray for His grace in our midst.
Dr. Ortega was very empathetic, thorough, more optimistic than the other Dr but very different in every way about how he communicates things. He loves Jenna and always seems amazed at her beautiful spirit and physical beauty. He thinks she´s mature beyond her age and she that ¨with a glance he knows that she knows what he is going to say and that he knows what she is thinking¨. They have a special understanding. He insists on us calling him anytime, day or night. His heart is breaking with ours as parents and he will do whatever he can to support us. Even though the basic information was the same, we felt loved & supported & more positive leaving there and going back to the room to talk again to the kids.
Jordan wanted to spend the night with Jenna and she was thrilled. Now that she´s more stable & sleeping better at night, it´s not a hard job. So Dani came home with us and for a while we each attended to various things: UCI finances for Dani, personal finances for Bruce, and I was on the phone with our medical insurance company. At 10pm we gathered for Dan P´s homemade grilled pizzas and a glass of wine and had great conversation with our beautiful Dani. Fell into bed at midnight.
1 July 2014 Such a relief to have Bruce back. I picked him up and took him right to the hospital to see Jen who was so happy & relieved. It´s great to have ¨fresh blood¨ around bringing strength & new stories. We went home for lunch with Jordan and I must say I haven´t seen Jordan laugh that much in a long time. :) After a rest, we met up at the hospital again (Dani started her dance camp today), talked & laughed & watched Argentina-Switzerland online of the World Cup.
Later the endocrinologist came by with a manual on TPN for Jenna to read and one of the oncologists came in, too. We had a lot of questions about TPN, whether Jenna´s intestines will ever be functional (they don´t know) and if chemo is now out of the question. They answered as best they could, but later the oncologist called Bruce & I privately to his office to speak just to us. So there we had THE TALK. The one where they lay out the cold, hard reality and tell you things they never said before (or at least that you never heard before). Gastric cancer is terminal. With metastasis, life expectancy is around 10-12 months. The chemo wouldn´t kill it anyway even if they could administer it...just prolong her life. What would he do if if were his daughter? Take her on a trip and enjoy as much quality of life with her. I felt my heart stop. Tears welled up and ran down my cheeks. It was an unreal moment. The Drs have definitely been more indirect up til now...but with the exhausting of nutritional options for her, chemo is being ruled out and short of a miracle, she could die.
We had to return to Jen´s room where the 3 kids were and a friend who was to spend the night with Jen. We really wanted to talk to Jenna´s main oncologist (appt tomorrow 7pm) to get his input and because we have a much better relationship with him than this other Dr. We decided to calm ourselves, wait to talk to Dr. Ortega the following day, talk to Jenna privately first and then to her siblings about this new reality. The first oncologist didn´t think we should tell our kids but our family is much more open - and besides, the kids are smart & are already making their own assumptions about how things are panning out. It was already 10pm by then, Bruce was jet lagged and we decided to have these conversations tomorrow. Although the kids knew something was up & we gave a brief synopsis of some of the generalities of the conversation, we didn´t really get into it.
Back at home, we got something to eat and watched some World Cup (USA-Belgium) before falling into bed.
30 June 2014 First night without throwing up in the night!!!! So excited as it seems to be FINALLY slowing down. Things are moving out and down and this is good. Our friend & teammate Laura stayed with Jen while Dani and I went downtown for some dance clothes & shoes as she starts dance camp tomorrow and has so many things that are worn out. So much fun for me to be able to do that with her. :) The kids are working on a little surprise for Dad as he returns tomorrow!!
Had a difficult yet significant talk with Jen (& Dani) who was discouraged & fearful about death. We haven´t talked much about death (1) because the Drs have always held out hope & a plan for a ¨curative treatment¨ and (2) we just haven´t feared for Jenna´s life in this process. Although we know that Stage IV gastric cancer has a terrible mortality rate, her case has been ¨light¨ with no vital organs or nodules affected, just small spots outside the stomach and the original umbilical tumor. But our friend´s recent death and all the difficulties with Jen´s nutrition and the delays in chemo have made questions arise for all of us. I guess in summary we decided that while we´re open to talking about death whenever anyone feels the need, we´re not going to operate with that thought on our shoulders or let it dominate us. We are in a fight FOR LIFE and don´t plan to focus on death.
In the early evening,with perfect timing, 3 of Jenna´s best friends here showed up in crazy Moroccan outfits singing ¨Ain´t No Sunshine When She´s Gone¨. So great to laugh & so thankful for friends willing to make fools of themselves in the hospital!! haha (photos under Blessings).
29 June 2014 A slightly better day with a couple more trips to the bathroom; sorry for the gory details but better down than up! That´s progress. She is extremely tired and rests much of the day. She did get out to the sunny patio a couple times today; with Jordan pushing, we even ¨escaped¨ and went outside and around the block! haha. Dani got out to our old downtown church and out to lunch with a friend. By late afternoon, Jordan and I headed back to the house. Hoping for a better night tonight.
28 June 2014 Another long day for Jenna. She threw up several times in the night despite their attempt at giving her more rest through some sleeping pill! You just can´t sleep through that. :( Dani & I were alternately with her with no visitors so that she could just be quiet. The throwing up has definitely slowed down but to me it is still unbelievable that 4 days have passed without the nutrition on and she is still vomiting! How can this be?! When will her body be rid of this stuff?! The Drs say they´ve given her all they can... She was able to go to the bathroom today and I hope this will help her tomorrow. She is so weary that she is resting all day long...not even looking at her phone or computer or a book or trying to talk. I took her in a wheelchair outside to the patio again today - a little sun & fresh air is so good. But it breaks my heart to have her so weak that we have to use a wheelchair...
I don´t even know how to encourage her anymore...what else can I say or do? When will her God show up? How much longer will she suffer like this? As a Mom, I have run out of answers.
The only thing Jen was kind of awake for (besides the trip to the outside patio) was the Brasil-Chile game which turned into a nail biter with overtime and penalty kicks! Personally, I am so happy for the enjoyable distraction that the World Cup is for us right now & thankful that we all enjoy futbol!
Happy, too, for friends who are providing fun & distraction for Jordan. After his friend´s b-day at the beach yesterday, he went back to Alvaro´s house for a sleepover and spent all day Saturday there! (At least someone is having fun, right?!) Gracias, Mónica; eres genial!
27 June 2014 Jen had a better night and the vomiting is slowing down although still very present. She is nauseous a lot and therefore resting a lot. We just keep putting one foot in front of the other and following what the Drs advise. We are a bit nervous about doing TPN (see 26 June for more info) at home due to the higher risks of infection but at least it should keep her stable and give her the ability to be at home. Bruce gets back on Tues midday here and it will be great to have his stable self to help anchor us all.
Dani is firming up plans today for how she will be spending July since not a lot of work has arisen. She has one option but it is way too few hours. It looks like she´ll be doing a local day dance camp and that should be a good boost for her to be busy and dancing.
Had a beautiful time praying with Dora today. She came over and anointed the room and Jenna and we just let Jenna mainly sleep while we prayed over her. So precious.
26 June 2014 Today is Bruce´s birthday. He´s in PA now and we have a 4pm skype call with him. I think the best birthday present would be some good news! I am praying & hoping for that today...Dani is back now & we are looking forward to having her with us. Jordan is still with the Ludis. :)
Both the oncologist & the endocrinologist came by today with the latter bringing significant news. The priority of Jen´s medical team is to get her stable, to stop vomiting and to clean out her intestines. She can´t go home yet but they REALLY want to get her home because it makes a significant difference in everyone´s anemic state and ability to cope. It´s getting really old here. With this unexpected difficult time with the latest attempt at nutrition, the J-tube, things have not panned out. For whatever reason, her intestines move too slowly to receive nutrition into her gut. They have only ever seen one patient like this before. We need to PRAY those intestines into motion!
They plan to train us to manage TPN (Total Parenteral Nutrition) at home. This is IV and they can give her up to 1600 calories per day. Then, in time, and slowly, we can reintroduce nutrition through the J-tube. Eventually, the hope is that she will ONLY use that and then, of course, add eating by mouth. It´s just taking sooooo long. My oncologist US nurse friend Cathy says this would stump even the brightest in the US and assures me that we are in good hands. They are putting this in motion (paperwork, etc.) and she´ll go home sometime next week.
25 June 2014 Last night was even worse. The vomiting was throughout the night and I must say a huge THANK YOU to Raquel who was there with her. Tonight I´ll stay with her. Fortunately, I have been able to spend almost all day here as the Ludis (our dear friends & Argentine coworkers) took Jordan to the beach in the afternoon & then to spend the night. Jenna has had a really rough day and was sleeping on & off all day from exhaustion. She had a few visitors that she enjoyed (thanks, Miguel, Lucas & Almu and Leila) but she was really weak. We read Psalms & listened to music and I massaged her hands & arms. Oh to be able to give her healing & deep, deep sleep myself!!
The Drs plan to restart this plan & encourage us not to let ourselves get exasperated. They will restart the nutrition (which has now been off for more than 24 hrs) super slow and increase the speed VERY slowly. We also still need to find the most effective med to stimulate her intestines and get them moving regularly at the same rate as the nutrition is entering. This balancing act is quite complex.
We enjoyed watching Argentina win their final match of the first round of the World Cup. :) Jenna is often wearing an Argentine t-shirt these days & everyone around here knows where she stands. :)
24 June 2014 Wow. Things took a turn for the worse. Jen was throwing up from 3-5am. Thankfully, her friend Christy was there with her and of course, the nurses were there. They had to turn the nutrition off and try to stop the vomiting but it continued most of the day. It seems her body reaches a certain saturation point & starts rejecting the nutrition - no matter where it comes in. Definitely disheartening.
23 June 2014 Things are calm today. They increased the velocity for the nutrition to 60. The idea is to get to the rate which will provide about 1500 calories so they can disconnect the parenteral nutrition (by IV) and she can go home with just her new J tube system. The endocrinologist is working out the necessary equipment with the company we´ve been using & the rep came by today. We need to stay on top of the med for keeping her intestines going now that she´s getting a fair amount of calories. Jenna is definitely sick & tired of the hospital and REALLY wants to be home by Wed!!
Hoping Spain can win today & redeem itself slightly from an embarrassing World Cup so far! Glad we still have Argentina to root for! (And we also track with the US each Word Cup to see how they´re improving.) Dani heads tomorrow to Morocco for 2 days & that should be great for her.
22 June 2014 Jordan & I got to go to church and share the good news of this week - although we are all quite heartsick about Rebecca´s passing. It was really sobering; it brought a lot of sadness and actually brought Jenna a lot of fear about death. For the first time she really came face to face with the fact that there really are no guarantees. Everyone is always saying here, ¨You´ll see how this will turn out well.¨ or ¨You´re a great family, of course she´s going to be fine.¨ No one can say that! Bad things happen to good people just as the rain falls on the good and the evil. We had to really pray over her & break the power of that fear.
Plus Dani really hit a wall today. She just couldn´t take the hospital any more. She´s so loyal, that this reality was eating her up but she really needs a break and so she stayed home most of the day and we plan for her to be home tomorrow as well. She´s going on a quick trip to Morocco Tues/Wed to see some dear friends and that will be so good for her. Jenna has arranged for some friends to spend the next couple nights with her.
I´ll be on my own so to speak on those 2 days but the Lord provided for Jordan a great outlet this week every morning with a couple friends and he´ll be busy up til lunchtime. So thankful!
21 June 2014 Today is the first day I haven´t had to set an alarm for a while! So nice to have a slow morning...first day of summer. We are so sad for some dear friends here in Malaga who have been fighting for their youngest daughter´s life (a genetic liver disease) and who passed away yesterday. Unbelievable sorrow for the parents, her 4 siblings, her boyfriend and all who knew her. All the young people of Malaga are in shock. Her oldest sister is the one who went with Jenna to Kashmir, India a number of years ago. God´s plans are so far above ours...we can´t get our minds around it. I am heartbroken for the Mom and all the family...
Today, hopefully, they´ll begin passing nutrition through the new tube at a slow velocity. We´ll see how her body tolerates it. Hoping and praying for the best possible outcome!
20 June 2014 Hard time sleeping, can´t get comfortable. There are a lot of tubes and she can´t use her abdomen to move much. They are trying to monitor the different meds for pain, nausea, anti- inflammatory, hydration, etc., so there are lots of tubes. We´re surprised at how long the J-tube is hanging out; it seems quite cumbersome. Not sure if they´ll shorten it or not. Her J-tube is draining a lot of bile today and since she´s only thrown up once this morning, perhaps this means things are less inflamed and things are heading downward (thank God!). The Drs have been very attentive and each day we´ve seen a GI Dr, an endocrinologist and an oncologist. Today was Jordan´s last day of school and they celebrated by going to a water park (some people have all the fun!) I picked him up happy, sunburned and tired. We watched some World Cup (France looks amazing) and then fell into bed.
19 June 2014 Day of recovery. Lots of sleeping, resting. Tried to get up with Dani & I to go to the bathroom but she almost fainted and we had to call a nurse & get a wheelchair to get her back to bed. She wasn´t feeling too good for a while after that, but she came back. Late in the afternoon, she began to throw up and it was nasty - yellow/green bile! I called the nurse the first time because I wasn´t sure what it was and why she would be throwing it up. Later the surgeon explained that because of inflammation around the surgery site where the tube is, bile excreted into the intestines above it can´t get by and has to get out somehow. Poor thing! It hurt her abdomen so much to throw up. Dani & I stood with her and it got better after about 5x.
18 June 2014 This morning we were visited by Jenna´s first Dr who had operated on her umbilical tumor. We all think he´s great and the kindest of the bunch. We haven´t seen him in a long time and it was strangely reassuring to know he would be the one doing her jejunostomy. We had a great visit with teammates Kyle & Nell and will miss them this summer! Dani loved working with their daughter Mikayla in dance; it gave them both life.
The surgery was scheduled for 7pm but they came and got her at 5pm! So we´re here waiting it out. I´m hoping the surgeons aren´t rushing things in order to get to see Spain play at 9pm in the World Cup! Haha. The first thing Jenna said when they told her the time of the surgery was, ¨That means I´ll miss the game...¨ Her Dr said, ¨I thought the same thing!¨
Surgery went well. She´s sore & sleepy but happy. The surgeons said her intestines were ¨as if she had never been operated on¨. This is a big surprise to them - and an answer to prayer. However, we know they are also not functioning as they were pre-surgery. But it´s super positive. It´s really critical at this point that Jen can get nutrition & chemo as soon as possible...
17 June 2014 It feels like this was the day we were waiting for! Nothing amazing happened during most of the day except that we had a great visit with Catherine, our nurse friend and she took so much time to explain a lot of things to us. She has consulted with a great GI Dr at UNC and he is pretty much in agreement with Jenna´s doctors so that was reassuring. It is apparently a complex situation without a lot of clear answers. The best guess at the sudden vomiting is a combination of slow intestines from the local chemo and the site where the esophagus was attached during surgery to the small intestine developing some scar tissue or nerve or muscle damage in this process. Hopefully the parenteral nutrition is going that area a rest and giving it a chance to heal. Then later in the evening, Jenna called to let us know that some Drs came by to tell her they had discussed her case in the team meeting (interdisciplinary) and decided to go for a jejunostomy instead of parenteral nutrition at home. This tube inserted into her small intestine through the abdominal wall will become her new feeding site. Hopefully, the nutrition will stay down since theoretically it will bypass the area where the vomiting is triggered! You may remember we asked for this a long time ago but they didn´t feel it was good in Jenna´s case. Now there´s no choice. With this J-tube, she will be able to continue with chemo.
16 June 2014 A long & tiring day with no new news. We´re pretty tired of this. There don´t seem to be any further answers but there will be a team meeting of doctors tomorrow afternoon. I have been praying for light & discernment for the doctors and today I was meditating all day on a devotional statement I read from our former pastor in Buenos Aires; ¨God said, Let there be Light.¨ I meditated on that and thought about the power of God´s voice to speak illumination into the universe - powerful. I prayed this all day long over Jenna´s situation...a couple dear friends joined me to pray at the hospital as Jenna was getting an endoscopy. Later on they told us the endoscopy showed everything was normal. So frustrating!
15 June 2014 Thankful for another phone conversation with Catherine. She is going to consult with a GI colleague in the US re: Jenna´s case & do some more research. I think we are doing more work than Jenna´s doctors! We are requesting to see the GI Drs in addition to the oncologists & an endoscopy for further testing and regarding possible med for paralized ileus. At least for now she is getting nutrition by vein and it is possible we may have to do that at home as well even though it has greater risks. They would NOT be able to continue chemo, however, with that due to the heightened risks of infection brought on by lowered defenses from the chemo. So I don´t see that as a great answer. We really want to get her eating again and moving forward with the chemo. We expect a restful day today as Jordan heads into his last week of school. Argentina plays tonight in the World Cup; unfortunately it starts at midnight for us!
14 June 2014 Thankful for a phone call with Catherine, an experienced oncology nurse from the US who is living here in Spain now. She gave us another idea to pass on to the Drs - a possible paralized ileus - or part of it which would greatly slow down the processing of food. It is basically nerve or muscle damage (in Jen´s case, most likely from the chemo). This takes a different kind of med than she´s been getting for slow transit. We mentioned this to the Drs. I kicked Dani out of the hospital to go get a break and get out tonight so she took off to youth group, a birthday party & a sleepover at her friend Katie´s. So happy she gave herself permission to do that. Jordan played in a tournament with his new team today & his coaches were pleased with him. I´m so proud of how hard he´s worked this year in spite of all the personal stress. At night he went to the year-end event at school with some friends and came back super late! He was happy & exhausted! Jenna´s friend Christy is spending the night with her. :)
13 June 2014 The swallowing test in radiology showed no occlusion in the intestines. They are clearly slow from the localized chemo during surgery & who knows when they will go back to normal. There is definitely something wrong, though; something is not permitting food to go down. We´ve discussed possible intolerance to the nutrition - but it happens even with other food. We´ve asked about doing an endoscopy to look closely at especially the sutured spot between esophagus & intestine and about any other further tests to provide clues. The fun event today was Spain´s first World Cup game which we all watched at the hospital with snacks and painted faces. Unfortunately, Spain played embarrassingly bad! But the World Cup is always a fun time at our house.
12 June 2014 Jen is now on parenteral nutrition (by vein) and is doing a test to look at her intestinal transit; she swallowed a liquid and they look at it in Radiology in that moment, at 6 hours and at 12 hours. Tomorrow we should have some word on how this went. Last time it showed no occlusion. We are praying it will give some clue as to the constant vomiting. Pls pray with us. Thankful for Dani who can be with her while I divide my time between home, hospital, Jordan´s school & futbol. We are rejoicing tonight that it looks like Jordan has made the high level competitive team! He will be playing in a tournament this weekend.
11 June 2014 Today Jenna was admitted yet again to the hospital. The continual vomiting is unacceptable and unanswered to this point. After seeing the Head of Endocrinology, he was determined to ¨get to the bottom of this¨ and had her admitted. She did blood work for the oncologist & should get another fresh bottle of continuous drip chemo tonight. While they do further testing on her intestines to determine why & where exactly things are not functioning, she will get parenteral nutrition (by a main artery) instead of her NG tube (which goes right into her gut).
10 June 2014 Just discouraged by continual vomiting. Jen has had the machine mostly turned off which means little to no nutrition. She has been sipping water with fresh ginger slices (for nausea) but to little avail. Had such a nice visit with Lynne Ellis from WA, an outreach leader from a church there who listened and prayed with us. Thank you, Lynne.
9 June 2014 These are tough days for Jen. The vomiting is not improving and we went in to see the Oncologist on duty. We waited quite a while for her to consult with the GI Drs and we finally left with a different, stronger med for intestinal movement & stimulation. Jenna can literally feel liquid accumulating without being able to go down and finally it has to go somewhere so her body throws it up. Only turning off the nutrition machine gives relief and then she gets no nutrition! There are so many ups and down on this long road...
8 June 2014 Another rough day. I am going to march into the hospital and demand some answers tomorrow! I have had it with this!!! If they can´t come up with a solution, then point us to someone who can!! Please pray with us for answers. She can´t continue to live like this. I was wiped today and we all took a day to rest - except Jordan & Dani who studied for Jordan´s French exam tomorrow for several hours. Basically we talked, ate some lunch, watched some tv series on the computer...talked about what the Lord´s been saying lately, I did some writing. Wanted to go to an informal concert tonight but no one was up for it. :( Tomorrow is another day.
7 June 2014 Rough day. Lots of vomiting. Jenna finally turned the nutrition off and we fixed a way to pass a hydrating drink through her tube to keep her hydrated. It´s so frustrating to feel helpless and to feel like there are no answers. Enjoyed our visitors last night and today midday, Fred & Kristen from AZ. They are fun to be with and were so sensitive to our situation. Jordan played his last league game and unfortunately we got the worst ref of the year. I´ve rarely seen anything so flagrant! He plays his first international game on Mon pm against a Swiss team. :) Lots of studying today for upcoming finals and then a relaxing evening watching a movie and finishing Wimpy Kid. :)
6 June 2014 So good to all be under the same roof. Except for Bruce who is now in Canada. :) We are all well; Jenna´s nutrition is humming, less vomiting but still no eating by mouth. The chemo is silent and only the bottle around her waist reminds the rest of us. Dani has a terrible cold and both Bruce & Jordan have had colds. But I´m thankful that in this whole year so far, Jenna has had NOTHING. Thank You, God! May it continue to be so, even with chemo.
5 June 2014 She´s home! After running the chemo all night and everything being fine, the oncologist gave her the ok to go home. As I wrote yesterday, she will be on a continuous drip for the next 6 months. We had a good conversation with the oncologist yesterday answering various questions. It looks like a jejunostomy (feeding tube into the intestines) could be on the table again a bit later. It depends on how things go and how long they anticipate her needing ongoing nutrition. It´s just a relief to finally get it started. Even though her weight is still an issue, she is stable and her bloodwork is good so they don´t want to delay any further.
4 June 2014 Slow start to the morning but by noon she had her NG tube going again, meds on schedule again, IV fluid and a new parenteral line since she has phlebitis in the first spot. We are now waiting to see the Oncologist who is swamped (the others are at a convention). We have heard nothing about a J-tube so we´re assuming that´s a moot point. Not sure why that GI Dr. came in and raised our hopes again. But now that she´s used to the NG tube and they´re about ready to start chemo it kind of seems pointless anyways. Bruce left at 5am for Canada and I´m at the hospital with Dani & Jenna. Hopefully, I can get home to be with Jordan this afternoon and help him study. He also has fútbol tryouts these days for next year and those are super important to him. He´s having a problem in one of his feet - mostly the heel - and it seems like growing pains that a lot of his friends have also suffered. We´re stretching, massaging with alcohol with rosemary and sometimes spraying it with a pain killer. Poor guy! Dani has back issues from dance & we need to get her to physical therapy. How can everyone be so needy at the same time??! The Oncologist finally came by around 6:30, answered our questions & later the chemo was set up: a bottle with a line to her port that will continuously drip for a week. We´ll change the bottle every week for the next 6 months. Relieved to finally have started this last portion of treatment.
3 June 2014 At the hospital today. Bruce leaves tomorrow for the rest of the month and we are all a bit sad and unsettled about this turn of events for Jenna. Plus Jordan is in his final stretch with final exams! Jenna got her new tube put in and we´ve talked to several Drs today but there is no news yet. Probably the chemo will start tomorrow. They´ve changed their strategy and will be using only 1 drug with the least amount of side effects (mostly thinking of nausea & vomiting). It will be put into her port (into a main artery) by continual drip and a bottle will be changed once a week. She´ll have this for 6 months. She should be feeling more perky tomorrow after being on nutrition & fluids here.
2 June 2014 Well, today was full of surprises. I took Jen to an oncology appt and apart from checking in with her and recognizing that things were not ideal but that she was stable, she told us they wanted to start chemo this week. WHAT?! We were surprised. But Jenna IS anxious to get going and it looks like it´s going to take a while for her body to adjust. So since they needed to replace her NG tube, they decided to admit her for 24-48 hrs to give her IV fluids, nutrition by vein and get the new tube in and give her that nutrition, too. I feel nervous because these bothersome symptoms have sabotaged her progress and I don´t feel like she´s very strong. But the Drs are probably right: she may not be very different from this for a while. (I still want to keep looking for options for the vomiting!) Jen had a 2-hr prayer session for her and we took her to the hospital after that. To our surprise, a GI Dr whom we had never met before came in and asked why they had never given her a J-tube (a feeding tube that goes into the intestines by way of the jejune). We had fought for this option long ago but were told it wasn´t an option for her. But this Dr wants to put it on the table again. Wow. We were really surprised. So we´ll have to see what happens with that.
1 June 2014 We are hopeful about seeing results of the 24-hour prayer chain. We know that God hears. We know that prayer changes things. I just want to see a change in my daughter! Last night I heard her throwing up in the middle of the night and I felt disappointed...I asked the Lord to protect me from demanding certain answers from Him but I confess, I REALLY want to see something happen to Jenna physically...I want to see the vomiting stop...I want to see her begin to eat again...I want to see her regain weight and strength...and mostly, I just want to get on with this so we can finish it! Is it wrong to ask for this? Why does He not seem to answer hundreds of people banging on heaven´s door about this? There ARE beautiful things happening in our family and Jenna HAS experienced and evidenced an amazing grace in these last few difficult weeks. I am thankful for that. Today, though, her NG tube got clogged and we could not get it clear. We tried a variety of things with all our strength and finally had to go to the ER. Unfortunately, they didn´t have the kind she needs on hand (!!!) and wanted to put her on IV fluids overnight. She opted for getting some fluids and then coming home. We´ll go back in tomorrow to get a new one put in. Jenna pulled it out herself at home and is certainly happy to be tubeless. She looks forward to sleeping on her right side tonight. :) She did throw up once, though, and threw up a pill which was a bit horrifying to us - because she hasn´t had a pill in weeks! She´s had everything in liquid through her tube! That means stuff is literally not digesting and just getting stuck in there! How gross is that? We definitely have some big questions for the Drs tomorrow. We need some answers!
31 May 2014 We are expectant today. Around 165 people are signed up to pray specifically during a half hour time slot, 263 said they are participating and many have written of their intention separately by email or on fb. Wow. We are more than honored. So far Jenna is about the same physically but is greatly encouraged emotionally & spiritually. Some friends came over to pray with us mid-morning and we were all touched. We pray that there can be a breakthrough today! In a little while we are taking her to be prayed for at a special event...you never know what a day can hold.
30 May 2014 Excited about tomorrow´s 24 hours of prayer for Jenna! We are overwhelmed at how many people are participating, giving us gifts of time, energy, sleep, compassion, etc. THANK YOU!! Jenna has been the same today; I hope tomorrow we will see some remarkable changes! Bruce and I got away to some special gardens for a few hours to pray, write, read, listen, reflect and it did us good. The girls have just left for a couple hours by the beach and Jordan is bummed because he has a game at the same time one of his best friends has a birthday party! It´s tough some days to be 13. On the other hand, Bruce has been so touched by Jenna´s good attitude in the midst of all this throwing up that he spontaneously bought her a gift at the gardens yesterday: a beautiful home fragrance of one of the famous flowers over there - glicinia (wisteria). It smells amazing & reminds me of her sweet fragrance - by Jesus´ grace - to us right now.
29 May 2014 Can´t say that Jenna is any different. She hasn´t been able to eat for close to a month now. She is feeling hunger and that´s a good first step, but she also needs to be able to hold food down! And assimilate the nutrients! It´s discouraging to not have good news for all the people who are always asking about her.
28 May 2014 The chicken stock hasn´t stayed down. :( She hasn´t tried anything else. When you´re nauseous & throwing up throughout the day, you don´t have much appetite or motivation to eat. She has a valiant attitude, though. At least she´s getting the liquid nutrition through her NG tube but it´s just not going to be enough for building her strength & weight. She was super encouraged by a special package received from friends and 3 friends who came to visit this afternoon - one surprised her completely as she´s been in Norway!
27 May 2014 At Jenna's request, I'm making organic chicken stock this morning! Hopefully, she will soon start eating again and dong ok with that. This week is important for us as a family as Bruce will be leaving Mon for a long trip and we are trying to take advantage of this time. Unfortunately, Jordan has a lot of homework, restarted an online English course we had taken a break from and 4 nights of fútbol (2 of regular training & 2 of tryouts for next year)! Dani is trying to organize some work for herself - teaching dance and English and we are starting to organize some things for Jordan´s summer.
26 May 2014 These days seem the same as far as Jenna's state. She throws up several times a day, is keeping the nutrition on 18 hours a day and getting about 1200 calories. So far she hasn't eaten - or wanted to - for a long time. But she did she say she dreamed about food last night and that's a good sign (she often dreams of food when hungry). She and Dani went walking this evening and hopefully that will generate some hunger for tomorrow!
25 May 2014 We are anxious to get through this down swing. I keep wondering when her body will adjust and stop this throwing up! It's hard when the clinical answers are not satisfying...3 different disciplines can only give half answers...sometimes life is that way. We don't usually live very well with an " I don't know." It was helpful today to talk to an Oncology nurse at church today and know that this happens all over the world. The good thing today was getting out as a family and walking by the beach. It was beautiful out and we enjoyed getting Jenna to her favorite place! In the evening we started watching some old family videos and the girls especially laughed their heads off!
24 May 2014 First day back at home. Jenna didn´t have a very good day; she threw up quite a number of times. She is keeping the nutrition on 18 hrs a day and giving her body a 6-hr break during the night. She hasn´t eaten any food for 3 weeks so it will be quite a process to start up again. Today she feels dehydrated; probably due to losing the IV fluids so she´s trying to compensate by shooting fluids into her tube. She doesn´t feel hunger now which she did before. Hopefully soon she will feel hungry since she won´t be getting the parenteral calories any more. We really need her to want to eat! It´s hard enough to eat in her condition post surgery but if she´s nauseous besides, that is really tough. It´s one of the reasons they keep putting off chemo. Jordan felt really sick to his stomach today and missed a fútbol game. :( Bruce and I got to go to some friends´ 2 daughters´ baptism today. It was a beautiful day and perfectly celebrated. So fun to get out and see some dear people. Dad made us a great asado and we had a precious family talk where Bruce shared about his week, God´s work in his heart and changes to extend his sabbatical at this time and have more time with us here. That meant so much to Jenna. Dani was going out for the night and that always does her good. Tonight the rest of us are watching the final of the European Champions League game where 2 Spanish teams are battling it out in Lisbon! What a great time in history to live in Spain and love fútbol!
23 May 2014 They are sending her home! Our doubts still stand but since nothing is changing, she may as well go home. The big difference will be that she won´t be getting the additional parenteral (by IV) nutrition or the hydration by IV. She will have to get all her nutrition through the NG tube and either start keeping fluids down or put them through her tube. It won´t be that easy. But it´s not a cake walk here, either. It took forever to get checked out. We had to wait til 2:30 for the Dr to come and give official word, her final report, prescriptions & Dr´s appt for next week. Then we had to check out and wait for some nutrition pack to take home with us since they disconnected all Jenna had going. We arrived home at 5pm. We sent Dani off at 1:30 to pick up Bruce at the airport and her brother from school, then we met up at home. Jenna wasn´t feeling great and after a long bath, went to bed. But we´re all so glad to be under one roof.
Still have some of the same questions. Sometimes the anti nausea stuff seems to work and sometimes it doesn´t. Jenna is keeping on the nutrition at least 10 hours a day and is moving up towards 1000 calories. She would have to keep her system moving continually with some things they´re giving her here; the Drs are in agreement that her slow system (from localized chemo) is a big factor in this problem. As well, they feel her body is still adjusting to the NG tube and her body is gagging on it, rejecting it and attempting to throw it up. None of these seem entirely satisfying to us but there seems nothing else left to do. Both the girls woke up today saying, ¨I am SO OVER this hospital.¨ There just seems to be a day when that happens and we all hit it today! I had a busy day and I am so thankful for Dani and for a couple friends who visited today. Also, the insurance came through on the car so Dani can now drive!
22 May 2014 Rough night with quite a bit of vomiting. Sometimes we're not sure how much of the anti nausea meds actually stay down. Yesterday after getting some meds she threw up 10 minutes later. How do you even know if she kept it down? Is she just having a good day or did the meds actually work?? The endocrinologist came by this afternoon and said she can go home tomorrow! Is it premature? Is she ready? Can she survive ok without the parenteral nutrition (by IV)? We are definitely sick of the hospital...do the Drs. just figure that psychologically she´s at a point where she´ll do better at home? Because I feel a bit insecure about the fact that they haven´t really figured out the vomiting thing, that she´s still vomiting a bit, that she hasn´t eaten anything by mouth for like 3 weeks and she´s expected to survive on 1200 calories at home...how is that supposed to work??!!
21 May 2014 Vomiting is down although not cured. She kept the nutrition on for the 10 hours. The Dr. said if she can get up to 1200 calories she can go home. Today she did 800 but tomorrow they'll increase hours and speed.
20 May 2014 A much better day. Thank God. She was able to keep the enteral nutrition on for 10 hours and only threw up one time. They seem to have finally found an anti-nausea med that actually works. Five little magical drops and she feels a lot better. It is very hard for her - and us - to see so many meds going into her body (for someone who barely takes anything for a headache) but it is just a season. There WILL BE another season. It was a busy day for me and I wasn´t at the hospital much; I´m so thankful for Dani and her help as Jenna´s right hand companion right now! Jordan hung out with Jen while I took Dani to her dance class and then the 3 of us went to the café of the hospital for a snack for Jordan before fútbol. Jenna said, ¨I almost feel like a real person!¨ Of course, she had an IV pole loaded down with stuff and slippers on...but I´m glad she could do something that made her feel ¨real¨ for a while!
19 May 2014 Jenna texted me this morning that she had had a really bad night. She woke up super nauseous & then started throwing up for quite a while. Just when we had finally had a good day! These kinds of things are discouraging to us but when I got to the hospital today, she was quite determined to press on and even started asking Drs about when chemo can start. Obviously, it´s not going to start yet but her point is well taken: Until chemo STARTS, it can´t FINISH and she wants to get to the end of this! So even though her question may seem premature under the circumstances, I was encouraged that she´s thinking about the future (that´s positive) and that she´s determined to get there - whatever it takes. May this continue...and may it be contagious...
18 May 2014 Took Bruce to the airport and then Jordan & I met with the girls at the hospital. It was such a great time to talk, read some Scriptures & pray. We were all blessed & relieved to have such a special time...As for Jenna, she left the NG nutrition (enteral) on for 7 hrs! That was great. She threw up a couple times today but overall much less than other days. We were glad to have a good day.
17 May 2014 She had the NG tube nutrition going for 4 hrs today. It´s not too many calories but the IV/port nutrition is about 1600. Today it wasn´t easy to get to the hospital as the nearby sports stadium is having a big outdoor event and streets were cut off. They are also playing loud music - not so cool for the patients at the hospital trying to rest! Dani came with us to Jordan´s game and we (Bruce & I) went back later in the afternoon to see Jen. Bruce leaves tomorrow for Istanbul. We had one of those difficult but productive conversations that sometimes come up in families...the emotions of our situation is wearing on us & putting pressure on other lingering issues. On the one hand I´m glad...but it´s never easy. In case you haven´t noticed, we´re not the perfect family. Gonna put this in the prayer requests! (Not to be perfect but to have grace to work out stuff.)
16 May 2014 The scan only showed that there is no occlusion in her intestines. They do, however, move super slow; it took 12 hours for the contrast agent to go through! The Drs continue to think that her slow system is the cause of the vomiting but I still don´t understand why it doesn´t stop! Even now that her system is completely clean, she´s still throwing up. So now they are also admitting that the NG tube makes some people throw up and that the body just has to get used to it. With that explanation I don´t understand why she was ok for 2 weeks with it and then suddenly started vomiting. To that they say it is probably a combination. So today the endocrinologist wanted to start her back on the nutrition by NG tube because it´s not good for her system not to be working (while in the hospital she´s been getting nutrition and water intravenously through her Port (into a main artery). She´s starting slow on the NG tube nutrition - and only 4 hrs a day for now to see how she does. She managed 4 hrs today but after throwing up several times, we finally turned it off. Hopefully, it will get better each day.
15 May 2014 Today was better, thank God. She didn´t throw up at all until the afternoon. She even managed to keep quite a bit of medicine (contrast agent) down that is for a special scan later on today. Perhaps the results of that will give some more insight into all of this. Tomorrow we´ll find out. Jenna enjoyed visits from a couple of friends today & we´re thankful for that.
14 May 2014 At 2am Jenna starting vomiting and couldn´t stop. Dani called the nurses and Jen actually threw up (out?) her NG tube! A bad night. One nurse said she has seen this before (a certain rejection of the NG tube) but that Jenna´s body has no choice but to accept the NG tube. They can´t do the 12-hr test today as instead they have to reinsert a NG tube in endoscopy, x-ray it to be sure it is positioned correctly and that takes time. She was still throwing up today though she consumes nothing but meds. It´s mostly saliva but it´s unclear how much medication she is losing. Unfortunately, a couple of the meds she needs do not come in IV form so instead of trying to swallow them, she puts them through the NG tube. But inevitably, about 10 min later, she throws up. It´s been a rather trying day. I am super thankful that Dani is here by her side; it´s been such a help & comfort to me. Bruce gets back this evening from his trip/retreat and Jordan gets back tomorrow around 6:30pm from his camping trip.
13 May 2014 Meds for anti nausea & to speed up her intestines have seemed to clean her out but not stop the vomiting. Tomorrow they plan on doing a special 12-hours scan where she drinks a liquid which is viewed after 6 and 12 hrs to see its progression in her system. The oncologists & endocrinologists have been attentive. She is still vomiting after every medication (which is being taken via her NG tube) and so its hard to know how much is actually staying down.
12 May 2014 We all keep wondering: what is so tiring about hanging out at a hospital?! We still have no good explanation for that! Today Jenna had a Cat scan of her abdomen which didn´t seem to reveal anything extraordinary. Several Drs seem to be in agreement that there is some kind of occlusion in her intestines making everything slow down and her body is rejecting anything new. The chemo wash she had at the time of her surgery makes the peritoneal cavity very sticky and apparently it is common for some of the intestinal wall to become blocked. While it wasn´t clearly seen in the Cat scan, they are still going on this theory having ruled out over saturation from nutrition or a GI virus. It´s possible they´ll do another kind of barium scan to see how things are actually going through. We´ll keep you posted. Several Drs came by over the course of the day - oncologists & endocrinologists. Perhaps today one of the GI surgeons will come by and have some more input. We are trying to be patient but I just want them to solve this so she can get on with getting stronger & gaining weight! The longer it takes to start chemo, the longer this road gets...and while of course, we´re not looking forward to chemo, we are looking forward to the end someday!
11 May 2014 Dani spent the night with Jen although we brought her home for a Mother´s Day lunch. I didn´t like being separated too much but at least we did something. Bruce made a great asado. ;) We all went to the hospital and spent the afternoon/evening there. Jenna continues to throw up any medicine taken by mouth. Even when she puts the medicine through her NG tube, she sometimes loses it. She´s on various meds & tomorrow (Mon) when the hospital is in full swing again, they´ll do some more tests to determine the cause(s) of all the vomiting. We´re happy that at least in the hospital she is staying hydrated & nourished. We were happy to have some visitors (thanks Alex & Amy & Laura!) and feel blessed to have so much support from around the world. Jordan is psyched about his school camping trip this week - he leaves tomorrow for 4 days. :) Today there was a marathon for women against cancer and several friends ran for Jenna. Wow!!
10 May 2014 Jenna was having a bad day again & couldn´t hold down even water. We went to the ER again and they checked her right in. They got hydration & anti nausea meds going right away and later when she was up in her room, the Dr. came by and then ordered some more things for her ¨intestinal transit¨ which is very slow (common after localized chemo like she had during her surgery). Hopefully it will help alleviate her system but no one is really sure about what´s going on.
9 May 2014 At least today we stayed out of the hospital! Somewhat better although it´s still been difficult for her to swallow liquids. We did reinitiate the nutrition, though. She is very weak from the lack of food & liquid but hopefully by tomorrow, her energy will be picking up. We got out to the country for a drive and sat by a river for a couple hours as a family this afternoon. So nice to get out! In the evening we watched a movie together AND saw Jenna on British tv! They showed her picture, told a bit of her story and prayed for her. How cool is that??
8 May 2014 Today she continued throwing up although somewhat less. She slept a long time and that was good. We went back to the hospital and saw her endocrinologist who thinks that since the nutrition has been stopped for almost 24 hrs and she is still throwing up that it is likely to be some kind of virus. Go figure! None of us have been sick but it is possible. Since she can´t even keep water down, the Dr. almost admitted her but in the end she had us get some anti-nausea med and a rehydrating liquid at the pharmacy. If she can´t keep that down, we have to go back to the hospital and have her admitted. Praying we don´t have to do that! Bruce got back around 7pm and I´m glad to have help with the transport for futbol and dance (Jordan and Dani) and some friends that are in town that we´d like to have come by. Really tired today but Jen seems a little bit better now so hopefully by tomorrow we can restart the nutrition - at half speed - and see how she does. This is a set-back for us but we will keep going by God´s grace.
7 May 2014 Well, today was a rough day. I guess some days are like that. Jenna started throwing up at 5am and when it didn´t stop we went to the ER. The weird thing was that she hadn´t eaten anything and she had never thrown up without eating in this whole time. 6 hours later we had seen a Dr., taken an x-ray to see if the tube had moved inside her, seen a GI surgeon who moved her NG tube around, took another x-ray, got her on an IV with liquid and anti-nausea meds - but she kept throwing up! Finally they turned off the nutrition, consulted with her endocrinologist by phone and their best guess was she over saturated and her body was saying enough! They said to eat nothing for 24 hrs, stay off the nutrition and only drink. We checked in with her oncologist at his request and went home, exhausted. How does waiting around a hospital tire you out so much? And why do things go wrong when Bruce leaves?!
6 May 2014 Listening to the girls laugh as Jenna designs Dani & a friend with henna does my soul good. :) The weather has been beautiful and I´m truly thankful for such a great spring this year. Jenna tries to get some sun each day on the porch as when she starts chemo she can´t be in the sun any longer. That will probably be the biggest sacrifice of the summer! Bruce left for 3 days of a personal retreat for his sabbatical & I´m happy for him that he can be in a quiet place (it´s not always very quiet around here!). Off to run Jordan to fútbol... / Escuchando a las chicas reirse mientras Jenna diseña a Dani y Raquel con henna me hace bien. :) El tiempo ha sido espectacular y estoy super agradecida por una primavera tan buena este año. Jenna intenta tomar un poco de sol en el porche porque cuando empiece la quimio ya no puede. Eso quizás será el sacrificio más grande del verano! Bruce se fue por 3 días de retiro personal para su sabático y estoy contenta que él puede estar en un lugar tranquilo (ya que no es tan tranquilo a veces por aquí!)
5 May 2014 I continue to wear a smile on my face with yesterday´s good news... :) SO thankful that this time with the tube has been SO much better and is now giving us results. Hooray!!! Today Bruce and I got out to lunch together in light of the fact that he is gone the next few days and next week in June begins a lot of travel. We are glad that things are manageable right now and today I realized that I´ve gone more than a week without a trip to the hospital!! (Except for today that Dani had to do some bloodwork. jaja. It always has to be someone!) / Yo sigo con una sonrisa en mi cara por las buenas noticias de ayer... :) TAN agradecida que esta vez con la sonda ha ido TAN mejor y que ahora nos está dando resultados. Hurra!!! Hoy con Bruce nos escapamos y salimos a almorzar juntos...como él va a estar viajando esta semana y la próxima algunos días y en junio ya empieza una época de muchos viajes. Estamos contentos que ahora la cosa está manejable y hoy me dí cuenta que ha pasado más de una semana desde que tuve que ir al hospital (excepto hoy que Dani tuvo que hacer una analítica. jaja. Si no es una es otra!)
4 May 2014 The greatest thing about today was that Jenna realized she has gained 2 kilos! That is awesome! We were all so happy with this news. :) Bruce, Jordan and I went to church in the am and Jordan went to spend the afternoon with a friend. When Dani finally returned from the retreat we had a great time regrouping, sharing about our weekend, having a cold drink out on the porch in the lovely Málaga evening and enjoying being together. / Lo más grande de hoy fue que Jenna se dió cuenta que había aumentado 2 kilos! Eso es estupendo! Estamos todos contentos con esta noticia. :) Bruce, Jordan y yo fuimos a la iglesia por la mañana y Jordan pasó la tarde con un amigo. Cuando volvió Dani del retiro tuvimos un tiempo lindo de compartir sobre el finde, tomar algo juntos en el porche en lo que era un hermoso atardecer Malagueño.
3 May 2014 Quiet morning for Jen as I went to a women´s retreat for a few hours and Bruce took Jordan to his fútbol match. We met up for lunch and later received some friends from N. Africa who left their 3 boys here with Jordan for the afternoon. Jenna ate ok but the good thing she mentioned today is that there are fewer esophageal spasms and that is great progress & news! She is feeling hungrier and that is good, too! She had a nice walk with her Dad by the beach late afternoon & it was beautiful out. / Mañana tranquila para Jen mientras yo fui a un retiro de mujeres para algunas horas y Bruce llevó a Jordan a su partido de fútbol. Nos unimos para el almuerzo y más tarde recibimos unos amigos del N. de Africa quien dejaron sus 3 niños aquí para la tarde con Jordan para la tarde. Jenna comió más o menos bien pero lo bueno es que mencionó que hay menos espasmos del esófago y eso es buen progreso y buenas noticias! Ella siente más hambre ahora y eso es buenísimo tambien! Ella tuvo un lindo paseo con su papá por el paseo marítimo esta tarde y fue una hermosa tarde.
2 May 2014 Thankfully, it was a better day for eating. The tube is working great & Jenna has a good attitude. Got her out for a walk at some Japanese gardens and a meaningful talk on a bench by a river...so blessed & thankful to be her Mom & to hear the things she´s learning. Since Dani isn´t here this weekend, I spent time with her in the afternoon watching a tv series about lawyers recorded by Uncle Ted. Glad I got to relax with her. Bruce painted the garage! :) / Agradecida por un día mejor en cuanto a comer. La sonda está funcionando bien y Jenna mantiene una buena actitud. Salimos para caminar en un jardín japonés y tuvimos una conversación significativa mientras sentábamos en un banco a lado de un río...tan bendecida y agradecida por ser su mamá y escuchar las cosas que está aprendiendo. Como Dani no está este finde, pasé tiempo con ella por la tarde mirando una serie sobre abogados grabado por Tio Ted. Agradecida que pude relajarme con ella. Bruce pintó el garaje! :)
1 May 2014 Can it really be May 1st?? Where has this year gone?! Today is Labor Day here and most everything is closed. I feel like I haven´t ¨worked¨ this year yet in some ways I´ve worked harder than ever before! Anyway, we all got to go to lunch at some friends´ house who are Algerian/Egyptian and they made wonderful couscous for us. Soooo happy that Jenna felt like going with us. Although she didn´t eat too much, being around Arabs is a treat for her and does her good. Jordan had a futbol game and Jen and I took Dani over to a retreat place where she´ll be helping out at a latina retreat our team has hosted for the last 4 yrs. Gonna miss being with them...The machine is working great & Jenna isn´t too bothered by it. / Puede ser que de verdad es el 1ero de Mayo?? Donde se ha ido este año?! Hoy es el Día de Trabajador aquí y casi todo está cerrado. Me siento como si no hubiera ¨trabajado¨ este año pero de algunas maneras he trabajado más que cualquier otro año! De todos modos, pudimos almorzar en la casa de algunos amigos quienes son Argelina/Egipcio y ella hizo un cuscús maravilloso para nosotros. Yo estaba taaaaaan feliz que Jenna quería ir con nosotros. Aunque no comió demasiado, estar con árabes es un lujo para ella y le hace bien. Jordan tenía un partido de fútbol y Jen y yo llevamos a Dani a un lugar de retiros donde va a estar ayudando en un retiro para latinas que nuestro equipo ha anfitriado ya por 4 años. Las voy a extrañar...La máquina anda genial y Jenna no está demasiada molesta.
30 April 2014 Fairly quiet day for Jenna. It´s not been as easy to eat as we thought. She feels somewhat nauseous at times and because her body is feeling pretty happy with the ¨easy¨ calories, she doesn´t get as hungry as before. Trying to adjust each day to this. She and I went to greet 2 women that arrived in Málaga today for a latina women´s retreat our team hosts each year and that was fun to get out together and sit & visit. I really appreciate them (one is a spiritual director & the other a psychologist) and was so glad to introduce Jenna to them. / Un día tranquilo para Jenna. No es tan fácil comer como habíamos pensado. Ella se siente a veces nauseosa y como su cuerpo está bastante contento con las calorías ¨fáciles¨, no tiene tanta hambre como antes. Está tratando de ajustarse a esto. Ella y yo fuimos a la casa de Laura para saludar a 2 mujeres que llegaron hoy a Málaga para un retiro para latinas que nuestro equipo organice todos los años y eso fue divertido poder salir juntas, sentarnos y visitar con otras. Yo las aprecio mucho (una es directora espiritual y la otra psicóloga) y estaba muy contenta poder presentarles a Jenna.
29 April 2014 I can´t believe that Jen was up for going to the beach with Dani & a friend! This shows she is getting used to her new look & feeling more confident about being in public. So glad. We are settling more into a routine this week after several weeks of stressful appointments, decisions, battles & paperwork. We are thankful for that right now. / No puedo creer que Jen quería ir a la playa con Dani y una amiga! Esto demuestra que se está acostumbrando a su nuevo ¨look¨ y que se siente más cómoda en público. Estoy contenta. Estamos asentándonos a una nueva rutina después de varias semanas de citas estresantes, decisiones, luchas y papeleo. Estamos muy agradecidos por eso ahora.
28 April 2014 The machine is humming along. Thankfully, Jenna is a good problem solver & has been able to fix any glitches so far with the machine & its tubes! We moved up to 2500 calories today & have realized she needs to begin to increase her activity level so that she will continue to be hungry. Her body has become used to limited calories & with this constant intake has felt satiated. Little by little her body should adjust. / La bomba está ¨zumbiendo¨. Gracias a Dios, Jenna resuelve bastante bien cualquier problema con la máquina y su tubería! Subimos las calorias a 2500 hoy y nos dimos cuenta que ella necesita incrementar su actividad para que tenga más hambre. Su cuerpo se ha ajustado a tan pocas calorias que con esta nutrición constante se ha sentido saciado. Poco a poco su cuerpo debería ajustarse.
27 April 2014 I have been so surprised at how different this time has been. I have been so pleased to see Jenna out on the porch each day (where neighbors can see her), out on the street with her siblings to play with a friendly cat yesterday and today we went to lunch at Claudia´s and she was up for going! So thankful. She´s doing great at running the machine, flushing out tubes and adapting her sleeping position to accommodate it. Hope we see lots of weight gain & a change in her energy levels soon! / He estado sorprendida por cuán diferente esta experiencia ha sido. Estoy muy contenta al ver a Jenna en el porche cada día (donde la pueden ver los vecinos), en la calle con sus hermanos ayer para jugar con un gatito y hoy fuimos a comer en la casa de Claudia y ella quería ir! Tan agradecida. Ella está manejando la bomba, limpiando los tubos y adaptando su posición de dormir para poder acomodarlo. Esperamos ver mucho aumento de peso y un cambio en su nivel de energía pronto!
26 April 2014 First 24 hours have been a success!. No problems with the pump and it´s humming is music to our ears - of calories! Jenna has already adapted a bag from India of hers to be a small carrying case for it and she is getting used to moving around the house with it & caring for it. We have no idea why this time is going so much better other then concerted prayer for her. So, THANK YOU! And THANK YOU, Jesus. / Las primers 24 horas han sido un éxito! No han habido problemas con la bomba y su zumbido ha sido como música para nosotros - de calorias! Jenna ya se ha adaptado un bolso de la India para poder llevarlo de un lado a otro. No tenemos ni idea porque esta vez ha sido más leve aparte de oración concentrada en esto. Así que, GRACIAS! Y GRACIAS, Jesús!
25 April 2014 After 5 hours at the hospital, Jenna came home with her new NG tube, the pump & other materials with it. It went A LOT better than last time and while she is bothered by it (sore throat & just getting used to moving around being attached to the machine), it is not nearly like the first one. This one is lighter weight & transparent. They´ve taped it to her with transparent tape & it doesn´t look bad. / Después de 5 horas en el hospital, Jenna vino a casa con su nueva sonda, la bomba & otros materiales. Fue MUCHO mejor que la última vez y aunque está molesta (le duele la garganta y es un lío acostumbrarse a estar atada a una máquina), no es como la otra. Esta es más liviana y transparente. Le han fijado la sonda con fiso transparente y no se ve tan mal.
24 April 2014 It´s been a lot of hassle to get this home nutrition worked out but we did it. Tomorrow at 9am Jenna will have the NG feeding tube placed and we will bring the equipment home and start pumping in those extra calories. Pray for strength! / Ha sido mucho lío arreglar todos los detalles para la nutrición domiciliaria pero lo logramos. Mañana a las 9 le van a poner a Jenna una sonda nasogástrica y traeremos todo el equipamiento a casa.
23 April 2014 Lots of hassles with working out this whole thing. Don´t need to go into all the details...anxious to get this taken care of! / Muchos problemas para arregular todo esto. No voy a entrar en detalles...ansiosa para empezar!
22 April 2014 Today Jen & I were at the hospital for a couple hours talking with the endocrinologist & being trained on the machine which will monitor the nutrition. It´s pretty simple. We are still waiting for final paperwork to be completed before the tube is placed in her and we´re good to go. She is definitely getting ¨unhappily resigned¨ to her upcoming reality. / Hoy con Jenna fuimos al hospital para algunas horas para hablar con la endocrina y recibir entrenamiento en como manejar la ¨bomba¨ que va a monitorear la nutrición. Es muy simple. Todavía estamos esperando papeles para poder ponerle la sonda y llevar todo a casa. Ella está ¨infelizmente resignada¨ a esta nueva realidad que viene.
21 April 2014 Met with the enodocrinologist to start moving on the NG tube. The details & paperwork have begun to be able to do this at home. Jenna is determined to gain weight - but she is NOT looking forward to this tube again! / Nos vimos con la endocrino para arreglar en cuanto a la sonda nasogástrica. Los detalles y papeleo han empezado para que podamos manejarlo aquí en casa. Jenna está determinado a ganar peso - pero NO le gusta la idea de la sonda!
20 April 2014 After some consideration we decided to take Jenna to the outdoor downtown Easter service. We had plans if we needed to leave early so that she could be a part of at least some of it. After our efforts, though, it was raining pretty hard and we only ended up driving to Málaga and back and holding our own family service at home. We had a nice Sunday lunch together and made it a special day. Nothing new as far as eating...there are still ups and downs. / Después de mucha consideración decidimos llevar a Jenna a un servicio del Día de Resurrección en el centro de Málaga al aire libre. Hicimos planes por si teníamos que salir antes para que ella pudiera aprovechar aunque un poquito. Pero al final, estaba lloviendo fuerte y sólo paseamos por la cuidad de Málaga e hicimos un culto familiar en casa. Compartimos un almuerzo especial juntos. Nada nuevo en cuanto a comer...todavía hay subidas y bajadas.
19 April 2014 The main thing that happened today for the whole family was Bruce & I taking Jordan and 4 of his friends to an amusement park for his birthday (this was what he had really wanted to do). It was a perfect day there without many people and so they rode the rides again & again without limit. It was a joy to watch them have so much fun, the highlight being 20 trips on the ¨Free Fall¨! Jenna & Dani stayed at home and did a lot of artwork & cooking together. / La cosa principal hoy para todos fue que con Bruce llevamos a Jordan y 4 amigos a un parque de atracciones para su crumple (esto es realmente lo que él quería). Fue un día perfecto sin mucha gente y montaban los juegos vez tras vez sin límite. Fue un gozo mirarles pasarlo tan bien y lo mejor fue 20 viajes en la ¨Caída Libre¨! Jenna y Dani se quedaron en casa e hicieron muchas cosas artísticas y cocinaron juntas. Un buen día para todos.
18 April 2014 The guys went on a hike and the girls went to the beach for a couple of house & we met back at the house for a late lunch & Turkish coffee (thank you, Jenna; you haven´t lost your touch!) Jen can´t be gone from the house for more than a couple hours since eating in public is somewhat stressful. :( But she had a great lunch. The new med (esophageal muscle relaxant) has brought some relief. No medical appts til Monday after this holiday week. / Los varones fueron a hacer una caminata/escalada y las chicas fuimos a la playa un par de horas y más tarde nos unimos en la casa para comer y tomar un café turco (gracias, Jenna; no has perdido tu toque!) Jen no puede estar fuera más de dos horas, pues comer en público es estresante. :( Pero comió bien al mediodía. La nueva medicación (relajante muscular para el esófago) le ha traído alivio. No tenemos más citas médicas hasta el lunes después de esta semana festiva.
17 April 2014 Enjoyed a pancake brunch made by Dad! Then we all had a relaxing day doing different things - gardening, reading, computer, talking, etc. The girls had some friends over in the afternoon & that was encouraging for them. Jordan & I started the Pink Panther together and later were joined by the whole family. Enjoying this long Easter weekend & getting geared up for the realities of next week with the NG tube... / Disfrutamos de un desayuno tarde de panqueques hechos por papá! Después todos hicimos distintas cosas - jardinería, lectura, guitarra, computadora, hablar, etc. Las chicas recibieron unas amigas por la tarde y eso les hizo bien. Con Jordan empezamos a mirar la peli Pantera Rosa juntos y al final se unió toda la familia. Estamos disfrutando este finde largo de Pascua y preparándonos mentalmente para las realidades de la semana que viene con la sonda NG...
16 April 2014 Dad made a great asado just for us. :) Unfortunately, Jenna couldn´t enjoy much of it. These last few days have been difficult for eating and she´s had a lot of trouble with esophageal spams. At 7pm we finally saw the GI Surgeon we had been waiting to see. The long and short of it is that Jenna´s case does NOT allow for a J-tube (there are lots of technical reasons for this but I won´t go into all of that). He explained it well so that we both understood that the only option for her for additional nutrition is the NG tube (nose). This was not the answer Jenna wanted but it has come down to this. This is a long holiday weekend so nothing will happen until Monday when we can see the Endocrinologist again. Lord, help Jenna to process this news... One good thing was we finally got a medication for the esophageal spams that have bothered her so much. / Papá hizo un buen asadao sólo para nosotros. :) Lamentablemente, Jenna no pudo disfrutar de mucho. Estos últimos días han sido difíciles en cuanto a comer porque ha tenido muchos problemas de espásmos del esófago. A las 19hs pudimos ver al cirujano digestivo. Para hacerlo corto, el caso de Jenna NO permite una yeyunostomía para nutrirla (hay muchas razones técnicas por esto pero no me da tiempo de explicarlo todo). Él lo explicó tan bien que las dos entendimos bien que la única opción para ella en cuanto a nutrición adicional es la sonda nasogástrica. Esto no fue la respuesta que Jenna quería pero es así. Ahora es un fin de semana festivo largo así que nada va a pasar hasta el lunes cuando veamos el Endocrino otra vez. Señor, ayuda a Jenna a asimilar esta noticia...Una cosa buena fue que por fin nos dieron una medicación para los espasmos del esófago que le han molestado tanto.
15 April 2014 Today we painted our living room and a lot of the stairwell and Jenna escaped to Ted & Claudia´s apartment to avoid the fumes. She enjoyed a quiet day over there although it wasn´t a good day for eating. Some friends came in the afternoon and Dani spent the night with her. / Hoy pintamos el salón y una gran parte de la escalera y Jenna se escapó al departamento de Ted y Claudia para evitar el olor tóxico. Ella disfrutó de un día tranquilo allí aunque no fue un buen día en cuanto a comer. Unos amigos vinieron por la tarde y Dani pasó la noche con ella.
14 April 2014 Today started off with Dani passing her Spanish Driver´s Test!!! This is a huge victory that perhaps only those of you who have lived in Europe can appreciate. She had already passed her theory before starting university and it expires in May so being able to pass it now was big. It will be such a big help to her and to us to have another driver. :) / Hoy empezó con Dani aprobando a su exámen práctica de conducir!!! Esto es una victoria muy grande que quizás sólo Uds que han vivido en Europa puedan apreciar. Ella ya había pasado la parte teórica antes de empezar la universidad y se vence en mayo así que poder pasarlo ahora fue muy importante. Será de mucha ayuda para ella poder moverse y para nosotros como familia tener a otro conductor. :)
13 April 2014 First time to all be in church together in a long time. Dani had been asked to do a dance at a local church and we all wanted to be able to see her. It was fun to surprise her by bringing Jenna (and I left early with her so that it wasn´t too much). We were all happy to watch Jenna eat quite a good lunch and in the afternoon she had a good walk with a friend by the beach. / Primera vez de estar todos juntos en una iglesia en mucho tiempo. Le habían pedido a Dani hacer un baile en una iglesia local y todos queríamos verla. Fue muy divertido poder sorprenderla trayendo a Jenna (y yo me fui pronto con ella para que no fuera demasiado). Estábamos contentos de mirar a Jenna comer un buen almuerzo y por la tarde caminó un rato por la playa con una amiga.
12 April 2014 Jenna had a full day! Bruce and I went to Jordan´s game which was a great win while Dani practiced a dance she´s presenting tomorrow in church and Jen finished a dessert for our team Easter celebration today. We all had a wonderful Easter lunch with our other 4 families (except for Ted who just flew to the US to be with his Mom) and Jenna decided a buffet is a great way to eat! If one thing doesn´t set well, you try something else! She is always nervous about eating around people so today was a success. :) She left early to rest and the rest of us talked, painted Easter eggs, the kids had an egg hunt, etc. Later, 4 friends of Jenna´s, all leaders among the youth here in Málaga, came to visit and enjoyed talking, eating, singing and they even helped us move some furniture. :) A wonderful day. Even now while I write this, the tears fall because I can hear the guitar downstairs and the voices of these young people praying and crying out for the life of my daughter. We are most blessed... / Jenna tuvo un día llenísimo! Bruce y yo fuimos al partido de Jordan - y ellos ganaron que fue genial. Dani se quedó practicando un baile para presentar mañana en la iglesia y Jen estaba terminando un postre para la celebración de Pascua de nuestro equipo hoy. Tuvimos un hermoso almuerzo con las otras 4 familias (menos a Ted quien viajó a los EEUU para estar con su mamá) y Jenna decidió que un buffet es una manera perfecta para comer! Si una cosa no le sienta bien, te sirves otra cosa! Ella está nerviosa en cuanto a comer delante de otras personas así que hoy fue un éxito. :) Ella se fue pronto para descansar y los demás nos quedamos hablando, pintando huevos de Pascua, los niños tuvieron una búsqueda de huevos, etc. Más tarde, 4 amigos de Jenna, todo líderes entre los jóvenes aquí en Málaga, vinieron a visitarla y disfrutaron mucho de hablar, comer, cantar y hasta nos ayudaron a mover unos muebles. :) Un día maravilloso. Mientras escribo esto ahora, me caen las lágrimas porque escucho la guitarra y esos jóvenes orando y clamando por la vida de mi hija. Estamos más que bendecidos...
11 April 2014 Bruce returned from a 2-wk trip and that was a relief! Since Jordan´s birthday is tomorrow, his classmates & us were able to pull off a surprise party for him and it was great! He hadn´t suspected anything and he was really touched to see 15 of his close friends at the churrería. We pretended we were going as a family since Dad had just gotten back but when he walked in they all yelled, sang, then embraced him. It was so fun! We also surprised him with the BMX bike he had been yearning for. After eating, we all went to a nearby field where they rode bikes, played fútbol and messed around for a couple of hours. Bruce & I got time to talk as they played while the girls went back home to finish a cake they were making for him. You can see that in BLESSINGS. It was so satisfying to give him joy in the midst of a difficult year. / Bruce volvió de un viaje de 2 semanas y eso fue un alivio! Como el cumple de Jordan es mañana, sus compañeros y nosotros pudimos armar una fiesta sorpresa para él y fue genial! Él no había sospechado nada y fue super tocado al ver a 15 de sus amigos cercanos en la churrería. Nosotros fingimos que ibamos a tomar churros como familia como papá recién había llegado pero cuando él entró, todos gritaron, le cantaron y después le abrazaron. Fue tan divertido! Nosotros también le sorprendimos con una bici BMX que él había estado anhelando. Después de comer, todos fuimos al campo donde ellos anduvieron en bici, jugaron a la pelota e hicieron un poco de todo por un par de horas. Bruce y yo tuvimos algo de tiempo para charlar y tomar mate mientras ellos jugaban y las nenas volvieron a casa donde terminaban una tarta que estaban haciéndole. Puedes ver eso en BLESSINGS. Era tan satisfactorio darle alegría en medio de un año dificíl. :)
7,8,9, 10 April 2014 Haven´t written this week...am exhausted and busy with so many details of life. Really need Bruce back and find myself praying he will bring back peace and blessing from his days of sabbatical in Turkey and Cyprus. He even spent 3 days in silence & solitude at a retreat center & we have had no contact during that time. It´s not easy trying to enter into each other´s world right now...we are each living such different things...two different worlds really. Mine is a fierce battle and his is quiet & spiritually focused all the time. I am so happy for him...but jealous at the same time! Sometimes I yearn for the possibility of changing places...We have had medical things up in the air and I have been 4 days in a row to the hospital. The first 3 days were trying to figure out how the Drs want to proceed with any additional nutrition - if a J-tube is possible or if we have to subject Jenna again to the NG tube (nose). We are really feeling bounced around between disciplines - GI, Endocrine/Nutrition and Oncology. There are things they must decide on together. We also don´t have a way to contact the Drs other than to physically go over there, so thus, the 4 trips this week. The 4th day was specifically for blood work and for an appointment with a GI surgeon re: the J-tube. The result of all of this was a lot of tension, need for perseverance and insistence on a decision. The clock is ticking. In the end, there will be a decisive, inter-disciplinary meeting on Tuesday (4.15) in which the 3 specialties will decide on the best course of action for Jenna´s ongoing nutritional support and we will find out on Wednesday (4.16). We have been waiting for this for weeks now and hope that something will relieve the pressure that´s on Jenna right now to consume all her calories by mouth. / No he escrito esta semana...estoy agotada y ocupada con tantos detalles de la vida. Necesito que vuelva Bruce y me doy cuenta que oro que él traiga paz y bendición de sus días de sabático en Turquía y Chipré. Hasta pasó 3 días en silencio y soledad en un lugar de retiro y no hemos tenido ningun contacto en ese tiempo. No es fácil entrar en la vida del otro ahora...estamos viviendo cosas tan diferentes...2 mundos distintos realmente. La mía es una batalla dura y la de él es tranquilo y enfocado en lo espiritual todo el tiempo. Yo estoy tan contenta por él...pero celosa a la vez! A veces anhelo la posibilidad de cambiar de lugar...Hemos tenido cosas médicas en el aire y yo he ido 4 días seguidos al hospital. Los primeros 3 días intentamos entender como querían los médicos proceder con nutrición adicional - si una yeyunostomía es possible o si Jenna tiene que someterse a la sonda NG. Estamos sintiendo como palomitas...siendo rebotados por todos lados - entre Digestivos, Endocrinos/nutricionistas y Oncólogos. Hay cosas que ellos se tienen que decidir juntos. No tenemos otra manera de comunicarnos con los médicos aparte de irnos para allá, así que eso es la razón para los 4 viajes esta semana. El cuarto viaje fue para una analítica y una cita con el cirujano digestivo en cuanto al yeyunostomía. El resultado de todo esto fue mucha tensión, la necesidad de perseverar y una insistencia en una decisión. El reloj sigue dando vueltas. Al final, va a ver una reunión decisiva el martes (15.4) en lo cual las 3 disciplinas se decidirán lo que es mejor para Jenna en cuanto a la nutricióna adicional y nosotros nos enteramos de ello el miércoles (16.4). Hemos estado esperando esto por semanas y esperamos que algo aliviará la presión que hay sobre Jenna ahora para consumir todas sus calorías por boca.
6 April 2014 Quiet day. Daniela is off with a friend, Jordan & I went to church for the first part and then came back to receive a guest - an Egyptian woman who has a healing prayer ministry - and who came to pray for Jen. After lunch we went down to the beach and Jenna really enjoyed that. Beautiful day. Some friends came and joined us and that was great for Jordan who played hard with his long time friend Ale. / Día tranquilo. Daniela está con una amiga, Jordan y yo fuimos a la iglesia por la primera parte y después volvimos para recibir una visita - una mujer egipciana quien tiene un ministerio de sanidad - y quien vino a orar por Jen. Después de almorzar fuimos a la playa y Jenna la disfrutó mucho. Hermoso día. Algunos amigos vinieron y se unieron a nosotros y fue muy bueno para Jordan quien jugó fuerte con su amigo de toda la vida Ale.
5 April 2014 Trying to rest up for this coming week, praying, enjoyed Jordan´s fútbol game & a friend of his visiting from Morocco...preparing food & things for next week. / Tratando de descansar para esta semana que viene, orando, disfrutando del partido de fútbol de Jordan y un amigo de él visitant de Marruecos....preparando comida y cosas para la semana que viene.
4 April 2014 Have had a big week of lovely guests (they figure under BLESSINGS) who have brought encouragement, distraction & BIG LOVE. We may be weary in body but we are filled up in a lot of ways emotionally! Meanwhile, we continue to walk through each day, still struggling with questions and much waiting....always waiting... / Hemos tenido una gran semana con hermosas visitas (ellos figuran bajo BLESSINGS) quienes han traído ánimo, distracción y MUCHO AMOR. Puede que estemos cansados en cuerpo pero estamos llenos emocionalmente de muchas maneras! Mientras, continuamos caminando cada día, todavía luchando con preguntas y mucha espera...siempre esperando...
3 April 2014 Trying to meet each day calmly with peace as we struggle through options, questions, answers we like or don´t like, and eating, calories, eating, calories, success and lack of it day in and day out. Miraculously, in spite of how little she is eating & keeping down, she is hanging onto her weight and NOT losing! So we are thankful for that. But we WOULD like it to go UP and for her to enjoy INCREASED ENERGY and LIFE. / Tratando de saludar a cada día tranquilamente y con paz mientras luchamos con opciones, preguntas, respuestas que no gustan o q no, y comiendo, calorías, comiendo, calorías, éxito y falta de éxito todos los días. Milagrosamente, a pesar de cúan poco está comiendo y bajando, se está manteniendo su peso y NO perdiéndolo! Así que estamos agradecidos por eso. Pero NOS GUSTARIA que subiera y que ella pueda disfrutar de MÁS ENERGÍA y VIDA.
2 April 2014 Met with Jen's Oncologist today who had spoken with the Endocrinologist about the nutritional issues. He is a very kind man and we are glad to have him on our side. Today he told us, ¨You are the kind of people I wish I had met outside the hospital.¨ He also said Jenna always looks so good (beautiful) and that she has ¨a pure countenance¨. What beautiful words! While he is eager to do his part of the job - the chemo - he is mostly concerned that Jenna be in a better place physically & mentally. We still don´t have an answer from the GI surgeons about the possible option of an abdominal feeding tube (J-tube) during this time, but we feel relieved that we have a couple more weeks to work on gaining strength & continuing to resolve & fine tune some of the nutritional challenges. / Nos vimos con el Oncólogo hoy quien había hablado con el Endocrinólogo sobre los temas nutricionales. Es un hombre super amable y estamos contentos de tenerlos de nuestro lado. Hoy nos dijo que ¨Somos el tipo de personas que a él le gustaría haber conocido fuera del hospital.¨ También dijo que Jenna siempre se ve guapa y que ¨tiene una mirada pura.¨ Que bonito! Realmente, él quiere ganar esta batalla con nosotros. Él está ansioso para hacer su parte - la quimio - más que todo está interesado que Jenna esté en mejor posición fisicamente e mentalmente. Todavía no tenemos respuesta de los cirujanos digestivos de una posible opción de una sonda de nutrición en el abdomen (Yeyunostomía) durante un período de tiempo, nos sentimos aliviados que tenemos un par de semanas más para ganar fuerzas y continuar resolviendo los desafíos nutricionales.
1 April 2014 Spent the day with a beautiful guest from France who spent 24 hours with us to bring refreshment and encouragement - Sandra. She is the Mom that Jenna nannied for during her year in France. You can read more under Blessings. We tried not to think too much about medical stuff! / Pasamos el día con una visita hermosa de Francia quien pasó 24 horas con nosotros para resfrescarnos y traer ánimo - Sandra. Ella es la mamá de los 5 (ahora 6!) niños a quien Jenna cuidó durante su año en Francia. Puedes leer más en Blessings. Intentamos no pensar demasiado en las cosas médicas!
31 March 2014 The endocrinologists agree that TPN at home DURING CHEMO is not an option. Too much risk of infection with the low defenses. So we are trying to assimilate the possible need to return to the NG tube for a time and also conferring with the GI surgeons to see if her abdomen is ready yet for a feeding tube into her small intestine as another possible option. At least we really liked this endocrinologist... / Los endocrinos están de acuerdo que Nutrición Parenteral en casa DURANTE LA QUIMIO no es una opción. Hay demasiado riesgo de infecciones con las defensas bajas. Así que estamos tratando de asimilar la posibilidad de volver a la sonda NG para un tiempo y también consultar con los cirujanos digestivos para ver si su abdómen está lista para un tubo de nutrición como otra opción. Por lo menos nos gustó este endocrino...
30 March 2014 Just chilling on this Sunday, getting ready for the fight this week. / Quedándonos tranquilos este domingo, preparándonos para la lucha de esta semana.
29 March 2014 Thankful for some energy to do some necessary cleaning. Starting to get the itch to clean everything before Jenna´s chemo. Don´t want to be paranoid, just prepared. And let´s face it, the house has NOT exactly been a priority lately! Jenna continues to struggle to eat...sometimes she is so very hungry...and just can´t keep it down. It´s so hard to watch; sometimes I think I can´t take it anymore. / Agradecida por un poco de energía para hacer un poco de limpieza necesaria. Tengo muchas ganas a limpiar todo antes de la quimio de Jenna. No quiero ser paranoica, sólo preparada. Siendo honesta, la casa NO ha sido mi prioridad ultimamente y le hace mucha falta! Jenna sigue luchando para comer...a veces tiene tanta hambre...y devuelve la comida. Es tan difícil mirar esto; a veces pienso que ya no aguanto más.
28 March 28, 2014 Through various contacts I was able to talk to a GI surgeon from another hospital who was more open to all my ideas. Also a nurse who is in the public system who gave me the low down on TPN at home. I just don´t get why everyone is so hyper vigilant about infection! I see great importance in getting trained, in having constant contact with professionals (daily if necessary), of hygiene in the home, etc. etc. but what choices do we have? We can´t keep her in the hospital for the next 5 months so she can get it! And she can´t keep losing weight and strength. She already has so little strength...I have NO IDEA how she´s supposed to make it through chemo...In the end, I got 2 appointments for Mon with 2 other endocrinologists; hopefully, someone will have some new idea or some flexibility... / Por medio de varios contactos pude hablar con un cirujano digestivo de otro hospital que estuvo más abierto a nuestras ideas. También con una enfermera quien está dentro del sistema público y me informó sobre el uso de NPV domiciliaria. No entiendo porque todos están tan hiper vigilante por el tema de infección! Yo veo la gran importancia de recibir capacitación, de tener contacto constante con professionales (si es necesario, todos los días), de la higiene en la casa, etc. etc. pero que opciones tenemos?? No podemos mantenerla ingresada por 5 meses para poder recibirla! Y no puede seguir perdiendo peso y fuerza. Ella ya tiene muy poca fuerza...Yo NO TENGO IDEA de como se supone que va a sobrevivir la quimio...Al final, hice 2 citas para el lunes con 2 otros endocrinos; esperemos que alguno tenga alguna otra idea o algo de flexibilidad...
27 March 2014 TERRIBLE DAY. Had a meeting with the oncologist to go over details about chemo. I had to remind myself to breathe as we talked about side effects...the BIG ONE being the possibility of infertility. It was a difficult afternoon processing that one and wondering if she should freeze some eggs...what would that mean?....is there time?...if she can´t carry a baby would she be willing to have a surrogate mother carry it? (Daniela volunteered.) In my head I was screaming: I CAN´T BELIEVE WE´RE HAVING THIS CONVERSATION!! Later in the afternoon we went to talk to the endocrinologist and to propose TPN (Total Parental Nutrition) thru a main artery at home to support Jenna´s calorie intake. We know this is done in the US and in Spain. But she said an emphatic NO. It is way too dangerous and risky as far as infection. She would not budge. We were stunned & more than disappointed! How much weight will they let her lose before it could be an option??? (She´s lost another kilo since getting home on Monday.) I was furious. I CAN´T BELIEVE THESE PEOPLE! CAN´T THEY SEE SHE NEEDS EXTRA SUPPORT?? If she keeps losing weight now how will she make it through chemo??!! After a good long cry I resolved to get on the phone tomorrow and find some other opinions! / DÍA TERRIBLE. Tuvimos una cita con una oncóloga para revisar los detalles en cuanto a la quimio. Tuve que acordarme a respirar mientras hablamos de todos los efectos secundarios...el MÁS GRANDE siendo la posibilidad de la infertilidad. Fue una tarde difícil asimilando eso y preguntándonos si debería congelar unos huevos...qúe significaría eso?....hay tiempo?... si ella no pudiera tenerle al bebé, estaría dispuesta que otra lo hiciera? (Daniela se ofreció.) Dentro de mi cabeza yo estaba gritando; NO PUEDO CREER QUE ESTAMOS TENIENDO ESTA CONVERSACIÓN!!! Más tarde fuimos a hablar con la endocrina y proponer NPV (Nutrición Parenteral por Vena) por via central en casa para apoyar la nutrición y número de calorías de Jenna. Sabemos que se hace esto en USA y España. Pero ella nos dió un rotundo NO. Es demasiado riesgo y muy peligroso en cuanto a infección. Ella no lo consideró. Nosotras estábamos sin palabras. Cúanto peso tiene que perder antes que nos den otra opción?? (Ya ha perdido otro kilo desde que volvió a casa.) Yo estaba furiosa. NO PUEDO CREER ESTA GENTE!! NO PUEDEN VER QUE ELLA NECESITA APOYO ADICIONAL?? Si sigue perdiendo peso ahora como va a poder con la quimio encima? Despúes de llorar un tiempo, resolví ponerme en el teléfono mañana y encontrar otra opinión!
25-26 March 2014 At home struggling to get calories in. It´s so hard; she can only eat so little at a time. Bruce is getting ready for a 2-week trip...I can see his uncertainty, feel the stress in all of us as we struggle to communicate and have some semblance of real life amidst this...We bless him to go, want him to go, but miss his steady, solid nature as we walk into chemo. / En casa luchando para consumir calorías. Es muy difícil; ella puede comer tan poquito a la vez. Bruce se está preparando para un viaje de 2 semanas...puedo ver su incertidumbre, sentir el estrés en todos nosotros mientras luchamos por comunicar y tener alguna vida normal en medio de todo esto...Lo bendecimos para ir, queremos que pueda viajar, pero vamos a extrañar su temperamento firmey constante mientras se acerca lo de la quimio.
24 March 2014 HOME AGAIN! About midday the endocrinologist gave Jen the OK to go home. She & the oncologist think it´s important for her to have a week at home to relax, be with family, eat and get ready for chemo (starting next Wed, April 2nd). We´re very glad to all be in one place again! But still a bit nervous about the whole eating thing... / EN CASA DE NUEVO!! Al mediodía la endocrina le dió a Jen el Ok para irse a casa. Ella y el oncólogo piensan que es importante para ella tener una semana en casa para relajarse, estar con su familia, comer y prepararse para la quimio (que empieza el miercoles q viene, el 2 Abril). Estamos contentos de poder estar todos juntos en un sólo lugar otra vez!
22-23 March 2014 Weekend was fairly good & quiet. There has been no vomiting for a number of days. Still not sure how Jen will be able to eat more than about 1,000 calories a day since that´s about her personal best (although we probably are not all that accurate, though!). Good times with siblings & visitors. Jenna even made some jewelry today - her first artsy thing in a while! / El finde estuvo bastante bien y tranquilo. No ha habido vómito por varios días. No estoy segura como Jen va a poder comer más de 1,000 calorías por día porque su mejor día fue de unas 1,200 calorías (aunque no estamos seguros del todo de su precisión). Buenos tiempos con sus hermanos y visitas. Jenna hizo unos pendientes hoy - su primer intento en mucho tiempo en cúanto a algo artístico!
21 March 2014 Today has been a surprisingly, suddenly good day for eating. Yahoooo! Jen has eaten a lot more - and kept it down! We think Dani brought lots of blessing with her! Since she is still not eating enough calories on her own yet, though, she will be in the hospital until Monday. / Hoy ha sido un día sorprendente y arrepentinamente bueno para comer. Yahoooo! Jen ha comido mucho más - y le ha bajado bien! Pensamos que Dani ha traído much bendición consigo misma! Como todavía no come lo suficiente en calorías por boca, se va a quedar en el hospital hasta el lunes.
20 March 2014 Having one of those days when the hard reality is hitting and is very real...eating is so difficult and anxiety producing, Jenna is weary of it all. She is eating what she can but it is still so little we don´t know how it´s all gonna go down... Good thing Dani arrives tonight from the US with all her energy & joy!! / Estamos en uno de esos días cuando la realidad cruda nos está golpeando y está muy real...comer es tan difícil y produce mucha ansiedad; Jenna está agotada de todo esto. Ella está comiendo lo que pueda pero no estamos seguros de como va a salir todo esto...Menos mal que llega Dani esta noche de USA con toda su energía y gozo!!
19 March 2014 Unfortunately, the Port-a-Cath got slightly out of place and caused a lot of swelling in the area. It had to be drained & cleaned and reset a bit. Now we can´t use it for nutrition until tomorrow when all the inflammation is completely down! Still struggling a lot to eat and we feel discouraged about how difficult this process is and how things are going to go when we´re at home and she has to ingest everything by mouth. The oncologist doesn´t really want to use the Port in an ongoing way for nutrition since he wants to keep it clean for chemo. Jenna hasn´t gained any weight since we´ve been here at this point. We need a breakthrough!! / Desafortunadamente, el Port se salió de su sitio un poco y causó mucha inflamación en la zona. Tenían que drenarlo y limpiarlo y ponerlo en su sitio. Ahora no lo podemes usar para nutrición hasta mañana cuando se baja toda la inflamación! Está luchando para comer y sentimos desanimados por lo difícil que es este proceso y como van a salir las cosas cuando estamos en casa y ella tine que ingerir todo pro boca otra vez. El oncólogo no mucho quire utilizar el Port siempre para nutrición para que se quede limpio para la quimio. Jenna no ha aumentado de peso hasta ahora. Necesitamos un avance urgente!!
18 March 2014 pm Got the Port-a-Cath put in this afternoon under local anesthesia. ¨Not too bad!¨ Jenna said. It´ll be 24 hrs before it can be used but they´ll pump her with 2500 calories until she goes home (probably Friday)...then she´ll have to take in everything by mouth. They took out her 5th IV as she got phlebitis in it, too. What a relief! We are praying the 2 meds she has begun will help her keep food down & that this Port will give her a boost in calories in the next 2 days. / Le pusieron el port-a-cat esta tarde bajo anestesia local. ¨No fue tan mal!¨ dijo Jenna. Van a ser 24 horas hasta que se pueda usar pero después le pueden meter unas 2500 calorias por día hasta que vaya a casa (probablemente el viernes)...a partir de allí todo tendrá que ser por boca. Le quitaron su 5ta vía porque tenía flebitis también. Que alivio! Estamos orando que los 2 medicamentos que ha empezado a tomar podrán ayudarle a bajar la comida y que este reservorio le pueda dar un empujón de calorías en los próximos 2 días.
18 March 2014 This afternoon Jenna will have a Port-a-Cath or a Port for Chemo put in her chest under the skin. This will be done under local anesthesia. This will enable her to receive chemo or some nutrition through a main artery. She has to be on a 6-hr fast beforehand so there´s not much struggle to eat going on! The endocrinologist evaluated my recipe for homemade protein smoothies and found it to be richer in nutrients and have 200 calories more than the bottled ones she wants Jen to drink! So we have the ok to bring those from home instead of the other ones!! ;) / Esta tarde le van a poner un reservorio para la quimio o port-a-cat en su pecho debajo de la piel. Esto se hace bajo anestesia local. Esto facilitará que reciba quimio o algo de nutrición por una vía central. Ella tiene que estar en ayunas por 6 horas antes, así que no hay mucha lucha hoy para poder comer! La endocrina evaluó mi receta para los batidos caseros de proteína que le hago y lo encontró más rica en nutrientes que el otro y tiene además 200 calorias más! Así que tenemos el ok de traerle desde casa sus batidos!! :)
17 March 2014 Today I´m basically having a let down and exhaustion has kept me at home. Bruce took his computer and went to hang with her and I´ll go in later. I hope he can meet her endocrinologist as well as get more of a feel for what it´s like there all day. ;) They told me that they started her on another med for keeping her intestines going. She has eaten a little bit today. Yesterday they have her scheduled for a port or ¨port-a-cath¨ on her chest under the skin for the upcoming chemo and for receiving some nutrition... / Hoy basicamente estoy echando un suspiro y un agotamiento me ha dejado en casa. Bruce se llevó su compu y fue a acompañarle a ella. Espero que él puede conocer algunos médicos y tener un sentir de que pass allí todos los días. :) Me contaron que hoy empezaron con otro medicamento para ayudar a los intestinos. Ha podido comer poco pero algo. Mañana le han citado para ponerle el reservorio en el pecho debajo de la piel para la quimio y para también recibir algo de nutrición...
16 March 2014 Had a good talk with a GI Dr. about her reflux and esophagus, nutrition, J tube, etc.; he was helpful and unrushed. She is to continue with the reflux med and let it build up in her system, focus on olive oil and if she can get them down, the protein shakes (they are nasty & artificial!). If by Mon the reflux med isn´t doing much they may try an endoscopy. She actually held down a bit of food today but the experience with the med was about 50-50. It´s exhausting and exasperating to focus on food all the time and every little detail of it...we´re going crazzzzzzzy!!!! We are also out of veins for the nutrition; she´s on her 4th IV site in 2 days. Tomorrow they may have to go to a main artery if she´s to continue having some kind of nutritional support while we resolve her issues. / Tuvimos una buena conversación con un cirujano digestivo sobre el reflujo y el esófago, nutrición, yeyunostomía, etc.; él nos fue de ayuda y no tenía apuro. Jenna debería continuar con el medicamento para el reflujo y dejarlo acumular en su sistema, enfocarse en el aceite de oliva y si puede, los batidos protéicos (son asquerosos y artificiales!). Si para el lunes no hay cambios, probablemente le harán una endoscopia. Ella pudo bajar algo de comida hoy pero la experiencia con el medicamento fue 50-50. Es agotador y exasperante enfocarnos en la comida todo el tiempo y cada detalle....nos estamos volviendo locoooos! Tambien ya no nos quedan venas para la nutrición; está en su 4to sitio en 2 días. Mañana puede que tengan que buscar una vía central para poder seguir recibiendo el apoyo nutritional mientras resolvamos sus temas.
15 March 2014 A GI Dr and the endocrinologist came by with the results of the radiology test; her intestines are really slow (probably due to the localized chemo) but that there are no blockages throughout her system. There is reflux right where she complains about pain in her chest so we are trying a med for that for a few days. An endoscopy may be needed to see what the muscles in the esophagus are doing to see if anything further needs to be done about those spams. Throughout this day, the med didn´t make much difference - she got it down once (not an easy job as a thick, licorice flavored substance) but lost her meal anyways and the 2nd time she threw the medicine up. We´ll see how tomorrow goes. She had a lot of visitors today so being tired doesn´t help to eat but it does help her psychologically! her brother spent the night with her. :) /
14 March 2014 The GI Drs came by and told us the news that a J tube (a feeding tube direct to the small intestine with a port on her belly which can be hooked up at night) is NOT an option for her. This is not good. It means that all her nutrition has to be by mouth - and we have already been trying that for weeks and haven´t been able to! The endocrinologist insists on protein shakes and olive oil (on anything she eats and just taking it by the spoonful. They are also trying to resolve the issues she has with vomiting as she hasn´t been able to keep anything down. Today she went to radiology for 4 hours to drink barium and have its entire transit through her system watched. In the meanwhile she is on IV nutrition but it can´t be an option for very long...the veins can´t take it. And by that evening, sure enough, she had developed phlebitis in the first IV site (inflammation of the vein evidenced by pain, redness at the site, low grade fever, etc.). They had to change to the other arm and that was an ordeal as its getting harder to get into her fine veins. The great thing today was that Dad returned from his trip! Were we ever glad to see him!!! / Los cirujanos digestivos pasaron y nos dijeron que el J tubo (una sonda de nutrición directo al intestino con una puerta en la barriga) NO es una opción para ella. Eso no es bueno. Significa que toda su nutrición tiene que ser por boca - y ya hemos estado intentando por semanas y no hemos podido! La endocrina insists en los batidos protéicos y el aceite de oliva (sobre lo que sea o pos si sólo). Están tambien intentando resolver los temas de los vómitos porque no ha podido bajar casi nada. Hoy se fue a radiología 4 horas para tomar sulfato de bario y mirar por la máquina como hace su tránsito. Mientras está recibiendo nutrición por vena pero no puede ser una opción por mucho tiempo...las venas no aguantan. Y justamente, para esa misma tarde, ya tenía flebitis en el sitio de la primera vía (inflamación de la vena que se evidencia en dolor, piel roja, fiebre, etc.) Tenían que cambiar de brazo y eso fue un lío por sus venas finas. Lo bueno de hoy es que vino papá!! Que alegría y alivio verle!!
13 March 2014 Terrible day! The tube was blocked at 4am and the nurses tried for an hour to unblock it in vain. They finally turned it off. When I got there at 8:30 nothing was resolved and it stayed that way most of the day. Can you believe this?! A series of logistical, technological & communication mishaps...more than 12 hours without any nutrition. She weighs the same now as Monday when we got here! I was advocating (Spanish style!) and had to become a Mama Bear to get anything to happen. Jenna was fed up with the NG tube which had hardly functioned 2 of the 4 days we´ve been here. They wanted to change the tube and put another (bigger!) one in tomorrow. NO WAY, JOSE!! We are done with that!!! Had the Big Talk with the endocrinologist and told her we need to look at other options. Not too easy. Sometimes we are unsure of what is cultural, what is the medical world, what is our personal philosophy, etc. But in the end, the tube is out, she´s getting nutrition intravenously and tomorrow is a new day. / Día terrible! El tubo fue obstruido a las 4am y las enfermeras intentaron por una hora a desbloquearlo sin éxito. Al final lo desenchufaron. Cuando yo llegué a las 8:30 nada estaba resuelta y se quedó así casi todo el día. Puedes creer esto??!! Una serie de problems logísticos, tecnológicos y de comunicación....y más de 12 horas sin nutrición. Ella pesa igual ahora que cuando llegamos el lunes! Yo estaba abogando por ella (estilo español!) y tuve que transformarme en Mamá Osa para lograr algo. Jenna estaba harta del tubo que había funcionado sólo 2 de los 4 días que hemos estado aquí. Ellos querían cambiar el tubo y ponerle otro (más grande!) mañana. NI HABLAR, JOSE!!! Hemos terminado con eso! Tuvimos la Gran Conversación con la endocrina y le dijimos que necesitamos mirar otras opciones. No nos fue fácil. A veces no estamos seguros de qué es cultural, qué es el mundo médico, qué es nuestra filosofía personal, etc. Pero al final, el tubo está fuera, ella está recibiendo nutrición por vena y mañana es otro día.
12 March 2014 Fairly smooth day, machine is humming calories but Jenna is pretty bothered by the tube. Let´s say that ¨bothered¨ is probably an understatement. Trying to hang in there. / Un día más fácil, la máquina está sonando calorias pero Jenna está bastante molesta por el tubo. Digamos que ¨molesta¨ no lo capta por completo! Intentando aguantar.
10-11 March 2014 After a long Monday and an even longer Mon night, we unfortunately were caught up in a series of logistical & technological glitches. In short, the machine that was to run the nutrition couldn´t be found, then the nurses weren´t sure how to run it, then it beeped all night and Jen got no nutrition until midday Tues when thru an x-ray, the tube was found to have a kink in it inside her. The unhappy machine kept beeping its displeasure until they finally just pulled the plug! Rough start. By Tues she was miserable and very weak as she had been fasting on Mon for the sedation part of placing the NG tube. After fixing the tube, the machine has worked silently and perfectly! Thank You, God! We talked to the endocrinologist about other options because Jen was so miserable but for now they feel this is the best way. We´ll carry on this week anyway; they want her to be on it for a month. They forgot an important detail: the tube has to be taped to her nose and it looks and feels a lot worse than we thought it would! / Después de un Lunes laaargo y una noche aún más largo, estuvimos en medio de una serie de problemas logísticos y tecnológicos. Para hacerle corto, la ¨bomba¨ (máquina) que monitore la nutrición no la podían encontrar, cuando llegó una de otra hospital, las enfermeras no sabían manejarla y después pitó toda la noche y Jenna ni durmió ni recibió nutrición hasta el mediodía el martes cuando por medio de una radiografía, se vió que la sonda estaba doblada dentro de ella. La máquina infeliz pitaba su desagrado hasta que la desenchufaron! Comienzo difícil. Para el martes ella ya estaba a la miseria con el tubo y muy débil porque estaba en ayunas para cuando la sedaron para ponerle la sonda gástrica. Después de arreglarlo, la bomba ha funcionado en silencio y a la perfección! Gracias, Dios! Hablamos con la endocrina de otras opciones porque Jen estaba tan molesta pero por ahora los médicos creen que esto es la mejor manera. Más adelante se pueden plantear otras cosas. Ellos quieren que lo use un mes. Se olvidaron de decirnos un detalle importante: la sonda tiene que estar fijado a su nariz y se ve y se siente mucho peor de lo que pensábamos!
9 March 2014 Happy to talk to Bruce and Daniela who are together this weekend in CA! They are visiting sweet Grandma together...We´ll go to the hospital tomorrow morning & will keep you posted on the NG tube. Jenna can´t wait to get calories pumped into her! Went to the beach for a bit with Jordan...beautiful day! / Feliz de poder hablar con Bruce y Daniela quienes están juntos este finde en California! Están visitando a nuestra dulce abuela juntos (madre de Bruce). Vamos al hospital mañana y les tendremos al tango en cuanto a la sonda gástrica. Jenna no puede esperar que le metan muchas calorias! Fuimos a la playa un poquito con Jordan...hermoso día!
8 March 2014 Waiting out the weekend, eating as best as she can! On Monday they will admit her to the hospital and get the feeding tube going. The pressure will then be off of her. She can continue to eat but know that she will be getting all essential calories whatever happens. Took her to the beach for a while and we enjoyed the sun. :) / Esperando que pase el finde, comiendo lo mejor que pueda! El lunes será ingresada para empezar con la sonda gástrica. Ya no tendrá presión sobre ella para comer. Ella va a continuar comiendo pero puede saber que está recibiendo todas las calorias esenciales sea lo que sea. La llevé a la playa y disfrutamos del sol. :) Que linda Málaga!
7 March 2014 Saw the endocrinologist/nutritionist & the GI surgeon today. It was very clear that Jenna needs additional nutrition since she has lost 10 kilos in a month. Other people may be able to afford this but she can´t! That is 18% of her body mass! So they are going to start with a feeding tube through her nose to the intestine (nice, huh). Eventually they´ll work up to 2500 calories a day. Let´s hope she can finally get some chubby cheeks! She was admitted into the hospital today but they ended up sending us home since they were lacking the personnel for her needs (??!!). 5 hours later, we were home. Sigh. She´ll be admitted on Monday for a week and then will come home with the tube for probably several weeks. This may need to be repeated or some variation used during chemo which will have its own challenges. We´ll keep you posted. The goal is to get her stronger so as not to delay chemo. / Vimos a la endocrina/nutricionista y el cirujano digestivo hoy. Estuvo muy claro que Jenna necesita nutrición adicional como ha perdido 10 kilos en un mes. Otras personas quizás puedan permitirse eso, pero ella no! Eso es 18% de su masa corporal! Van a empezar con una sonda gástrica por la nariz a los intestinos (que bonito). Con tiempo le van a dar hasta 2500 calorias. Esperamos que pueda obtener unos cachetes gordetes!! Hoy la ingresaron pero al final nos mandaron a casa porque le faltaba personal para sus necesidades (??!!). 5 horas despúes, estuvimos de vuelta en casa. Susurro. La van a ingresar el lunes para una semana y luego ella puede venirse a casa con la sonda por probablemente varias semanas. Esto podría ser repetido o alguna variación de ello durante el tiempo de quimio que va a tener sus propios desafíos. Vamos a mantenerles al tanto. La meta es que se pueda poner más fuerte para no postergar la quimio.
6 March 2014 Talked to 2 of Jen´s Dr´s by phone today. Tomorrow we have appts with the endocrinologist/nutritionist and her GI surgeon. Hopefully we can figure out what to do for her so that she can get the nutrition she needs to get well, to get strong again...and to move forward into chemo. We need some answers. / Hablé hoy con 2 de los médicos de Jenna. Mañana tenemos citas con la endocrina/nutricionista y su cirujano digestivo. Esperamos poder entender que hacer por ella para que ella pueda obtener la nutrición que necesita para recuperarse, para ganar fuerzas...y para poder moverse hacia la qhimio. Necesitamos respuestas.
5 March 2014 Struggling to eat much. It´s such a battle...we have no idea how we can add chemo to this... / Luchando para comer sólo un poco. Es una lucha tan grande...no tenemos ni idea como podemos agregar la quimio a esto...
4 March 2014 Eating very small quantities; still losing weight. Trying to communicate with the endocrinologist... / Comiendo cantidades muy pequeñas; sigue bajando de peso. EStamos tratando de comunicarnos con la endocrina...
3 March 3 2014 Ate a little better today, nausea is down. Not sleeping great. / Comió un poquito mejor hoy, las náuseas son menos. No está durmiendo muy bien.
2 March 2014 Ditto. / lo mismo q ayer.
1 March 2014 Today was a lot better. The medication helped keep nausea at bay and she was able to keep some food down. So thankful. Peaceful day. :) / Hoy fue mucho mejor. El medicamento disminuyó mucho las náuseas y pudo comer algo. Muy agradecida. Día tranquilo.
28 Feb 2014 The last 3 days have been very disconcerting. Constant nausea and lots of spams have equalled almost NO food taken in. She is weak and discouraged. Went to the ER tonight to see a Dr and she got an IV to hydrate her and give her a dose of anti nausea med. We have an Rx for an anti nausea med to try the next couple of days. They took blood and her analysis was good. If things don´t get better, she´ll have to go to the hospital for a while to get a feeding tube.... / Los últimos 3 días han sido desanimadores. Náuseas contínuas y muchos espasmos han significado que está casi sin comer. Está débil y desanimada. Fuimos a Urgencias esta tarde para ver a un médico y le dieron una vía para hidratarla y darle un medicamento anti náuseas. Tenemos además una receta para un med anti náuseas para probar en estos días. Le quitaron sangre y salió bien la analítica. Si no hay mejoría, tendrá que ingresarse al hospital para recibir una sonda gástrica para nutrición....
27 Feb 2014 Lots of nausea today. Don't know why. Feel like we're playing a guessing game a lot of the time...what caused the pain? was it the food? just the intestines learning their new job? esophageal spasms? Why can she keep a food down one day and not another? With 6 small meals being so small (like half a yogurt), how can she ever get enough calories?? If she throws up one or a meal gets usurped by esophageal spams and she can't finish the meal, we're even worse off! Jenna & I don't like that life is revolving around food. / Muchas náuseas hoy. No sabemos porqué. Sentimos que estamos adivinando muchas cosas todo el tiempo...qué causó el dolor? fue la comida? es que los intestinos están aprendiendo su nueva función? espásmos del esófago? Porqué le cae bien una comida un día o no el próximo día? Con 6 comidas pequeñas siendo tan pequeñas (como medio yogurt), como puede ingerir suficientes calorías? Si vomita una comida o le agarran espásmos del esófago y no puede terminar su comida, estamos aún peores! Ni Jenna ni yo nos gusta que nuestra vida se está girando alrededor de la comida.
26 Feb 2014 Rough day. Jenna didn´t feel good most of the day and we don´t know why. She hardly got any food down. Late afternoon we had our first appt with the oncologist and we went ready with questions. What we weren´t prepared for was that her chemo is going to last 5 months! 6 sessions of 21 days each. She´ll have a permanent IV by her collarbone and a bag of medication that will drip into her 3 weeks at a time. Fun stuff. She´ll lose her hair and can´t be in the sun all summer. I think we were both shell shocked as we left... At least we liked the Dr. / Día terrible. Jenna no se sentía bien todo el día y no sabemos porqué. Apenas comió. A la trade tuvimos nuestra primera cita con el oncólogo y fuimos listas con nuestras preguntas. Pero no estábamos listas para la información sobre la quimio: 5 meses!! 6 sesiones de 21 días cada uno. Tendrá una vía permanente cerca del cuello y una bolsa de medicamento que saldrá por gotas por 3 semanas. Que divertido. Va a perder su pelo y no puede tomar sol durante todo el verano. Creo que salimos bastante shoqueados...por lo menos nos cayó bien el médico.
25 Feb 2014 Not a great day for eating. She´s having a lot of spasms or cramping in her esophagus and a lot of times it hits her as she starts to eat and it sabotages the meal. Catherine (the nurse) gave us a few ideas about that but we still need to experiment. She was better by evening and we had some friends come by for a short visit. Bruce & I went out to eat with some dear friends and we had to leave her alone for a while until Jordan joined her after fútbol practice! I can´t believe we need a babysitter for our 22 year-old!! / El día no fue tan bueno en cuanto a comer. Ella está experimentando muchos espásmos o calambres en el esófago y muchas veces le pasa cuando come y sabotea la comida. Catherine (la enfermera) nos dió algunas ideas en cuanto a eso pero tenemos que seguir experimentando. Ella se mejoró por la tarde y recibimos una pareja puertoriqueña amigos nuestros por una visita. Con Bruce salimos para cenar con unos amigos y tuvimos que dejarla un rato sóla hasta que volvió Jordan de su entrenamiento de fútbol! No puedo creer que necesitamos una niñera para nuestra hija de 22 años!
24 Feb 2014 Got to talk with Catherine, a 40-year oncology nurse from the US who I ¨happened¨ to meet in church a couple weeks ago. She was so helpful answering our many questions. In the afternoon, in spite of a so-so day, Jenna was serenaded by some special visitors who came by to bless her. Wow! They are all musicians from Paraguay, latino friends from church and they brought a guitar and a cajón and sang Argentine tangos and Paraguayan folk songs! / Pudimos hablar con Catherine, una enfermera de oncología durante 4o años a quien ¨por casualidad¨ conocí en la iglesia hace un par de semanas. Nos ayudó muchísimo, contestando nuestras muchas preguntas. Por la tarde, a pesar de un día más o menos, unas visitas le cantaron a Jenna para bendecirla. Wow! Los cuatro son músicos de Paraguay, amigos latinos de nuestra iglesia, y trajeron una guitarra y un cajón y le cantaron tangos Argentinos y canciones folklóricas Paraguayas!
23 Feb 2014 Better day eating. Made homemade shakes instead of the bottled ones which were not settling well at all. She walked around our entire block which was the farthest she´s gone. :) / Mejor día para comer. Hicimos batidos de proteína caseros en lugar de los de la farmacia que le sentaban fatal. Ella caminó una manzana entera que fue lo más lejos hasta ahora. :)
22 Feb 2014 First outing today (besides to the hospital!)...down to the beach for a short walk. Jen LOVED seeing the sea again and even though it was windy it was good. Ran into some friends & had a short chat and then drove out to the country around sunset. Beautiful! Good change of scenery. :) We still have lots of challenges eating. / Primer paseo hoy (aparte del hospital!)...al paseo marítimo para una caminata corta. A Jen le ENCANTÓ poder ver otra vez al mar y a pesar del viento lo pasó bien. Nos encontramos con algunos amigos y hablamos un poco y después en el coche nos fuimos al campo (hacía Coín) mientras se ponía el sol. Hermoso! Un buen cambio. :) Seguimos con mucho desafío para comer.
21 Feb 2014 First F/U appt with the surgeon today. Good news: pathology report showed no cancer in the lymph glands around the stomach - very strange (miraculous?) as that´s usually its first travel point. No other unexpected cancer. A big surprise was realizing through the report that they also took out her appendix & gall bladder! Not sure if that was a 3-organs-for-the-price-of-one deal or that we should be grateful for this apparent common precaution! Met with the endocrinologist/nutritionist also and there were no surprises: Jenna is very underweight and must gain weight in the next 2 wks or she could be hospitalized with a feeding tube through her nose for a week! Pray for us in this daily battle to gain weight! / Primera cita con el cirujano hoy. Las buenas: el reporte patológico mostró que no había cáncer en las glándulas linfáticas alrededor del estómago - muy extraño (milagroso?) como eso es dónde se viaja primero. No hubo otras señales de cáncer inesperado. Una sorpresa grande fue que le quitaron su apéndice y vesícula también! No estamos seguros si esto fue una oferta 3 por 1 o si deberíamos ester agradecidos por esta precaución aparentamente común. También nos vimos con el endocrino/nutricionista y no hubo sorpresas: Jenna está muy bajo de peso y tiene que augmenter bastante en las próximas 2 semanas o puede que le ingresen por una semana para darle por sonda (en la nariz!) una nutrición. Oren con nosotros por esta lucha diaria para aumentar de peso!
20 Feb 2014 These first few days at home have been full of ups and downs. The daily task is to eat every 2 hrs, adding new things and seeing what sets well with her. She can't eat and drink at the same time. It's a struggle and there's still a lot of pain involved with eating. She eats very little at a time and has lost 6 kilos so far. We stick to a bland, easy-to-digest diet with little fiber for now. As her intestines adjust to their new job, we can add new kinds of food to her list. / Estos primeros días en casa han sido lleno de subes y bajas. El labor diario es comer cada 2 horas, agregando cosas nuevas y averiguando que le cae bien. No puede comer y beber a la vez. Es una lucha y todavía hay mucho dolor con el tema de comer. Ella come muy poco a la vez y ha perdido 6 kilos hasta ahora. Usamos una dieta blanda y fácil a digerir por ahora. Mientras sus intestinos se van ajustando a su nuevo trabajo, agregamos comida nueva a su lista.
16 Feb 2014 Jen slept well in her ¨new¨ room last night. We switched her bed from the attic to my office and put my desk and some other things up in her old room. Now she has fewer stairs and is close to the bathroom and to us. It was fun to set that up for her; one of my most pleasant tasks in the last few weeks! :) She´s eating better now that it´s Mom´s nutritious, home-made cooking! / Jen durmió bien en su ¨nuevo¨ cuarto anoche. Cambiamos su cama de la buhardilla a mi oficina y mi escritorio y algunas otras cosas a su viejo cuarto. Ahora tiene menos escalera y está más cerca del baño y a nosotros. Fue super divertido poder armarle eso; era uno de mis trabajos más agradables en las últimas semanas! :) Está comiendo mejor ahora que es la comida sana de mamá.
15 Feb 2014 She came home!! She had a better afternoon yesterday and the Drs. say she will experience pain and have difficulty eating for some time. She can do that at the hospital or at home. Guess what she chose? We are thrilled to all be together again starting Phase II. / Se vino a casa! Tuvo una mejor tarde ayer y los médico dicen que es normal que experimente dolor y que tenga dificultad para comer por un tiempo. Ella puede hacer eso en el hospital o en casa. Adivina qué eligió?! Estamos emocionados de estar todos juntos de nuevo y empezar Fase II:
14 Feb 2014 Rough morning. Experienced her first episode of "Dumping Syndrome¨. We hadn´t heard of it before this week but we didn´t like the way it sounded! It basically means that food has gone too fast through the system and caused a reaction including: rapid heart rate, sweating, cramping, nausea, dizziness and sometimes diarrhea. Nice. She drank a protein shake that they gave her and it was too much, causing her body to go into this reaction (minus the big D). It takes a while to recover from that and she didn´t attempt anything else until late in the day. This time it went better. We just have to learn which foods cause this reaction in her and avoid them for now. There´s a long road ahead and we need to be patient and determined. The Drs say she may go home tomorrow... / Una mañana difícil. Ella experimentó su primer episodio de ¨Dumping Syndrome o Síndrome de Resección Intestinal¨. No habíamos escuchado de esto antes de esta semana pero no nos gustó como sonaba! Basicamente significa que comida ha pasado demasiado rápido por su sistema y causa una reacción que incluye: taquicardia, sudores, cólicos, nausea, mareo y a veces diarrea. Que bárbaro. Ella tomó un batido protéico que le habían dado y fue demasiado, causando esta reacción en su cuerpo (menos la diarrea). Lleva tiempo recuperarse de eso y no intentó comer hasta la tarde. Esta vez le fue mejor. Tenemos que aprender cúales son las comidas que le causan este síndrome e evitarlas por ahora. Hay un camino largo por delante y tenemos que ser pacientes y determinados. Los médicos dicen que puede que le den el alta mañana...
13 Feb 2014 Today they took out half of Jen´s staples and the main IV tube in her neck. What a relief! Now she has to get all her nutrition and any medication by mouth. We met with an endocrinologist to talk about diet and supplements. Jenna is having a hard time today eating, experiencing lots of intestinal pain but it´s not clear if it´s all about the eating or that pain meds aren´t being assimilated correctly. / Hoy le quitaron la mitad de las grapas y la vía central de su cuello. Que alivio! Ahora tiene que obtener toda su nutrición y medicación por boca. Hablamos con un endocrino para hablar de la dieta y suplementos. Jenna ha experimentado mucha dificultad hoy en comer y ha experimentado bastante dolor intestinal pero no está claro si se trata de la comida o si es que los analgésicos no están siendo bien asimilados.
12 Feb 2014 Jenna is taking short walks, is awake all day and today started on a "bland diet". Yogurt, soft cheese, turkey slices, light crackers, more broth. She can only eat a wee bit at a time but she's doing it! Today the Drs. took her off the IV nutrition and we are a bit nervous about how she is going to consume those 2500 calories she was getting...Tomorrow we meet with a nutritionist to talk about her needs & the strategy to keep the weight on! / Jenna está tomando paseos cortos, está despierta todo el día y hoy empezó con una dieta blanda. Yoghurt, queso blanco, pavo, galletas saladas, más caldo. Sólo puede comer muy poquito a la vez pero lo está haciendo! Hoy los médicos le quitaron la nutrición intravenosa y estamos un poco ansiosos de como va a consumir esas 2500 calorias que estaba recibiendo...Mañana nos reunimos con un nutricionista para hablar de sus necesidades y la estratégia para mantener su peso!
11Feb 2014 Graduated to broth and jello, people! It was not Mom´s homemade broth, she wants to make clear. She felt full so quickly and yet it was ¨so unsatisfying.¨ You don´t really get that satiated feeling. Then she was really hungry by merienda (tea time) and all she could have was chamomile tea. (I saw her googling chocolate almond cakes while she drank it!) / Se graduó a caldo y gelatina, gente! No era el caldito de mamá, ella aclaró. Se llenó pronto y no ¨le satisfacía¨. Es como que ya no tiene la sensación de ser saciada. Tenía mucha hambre ya para la merienda pero sólo le dieron té de manzanilla. (Yo la ví en su computadora mirando en Google ¨tartas de chocolate y almendras¨ mientras lo tomaba!)
10 Feb 2014 Today´s big event was getting a special x-ray while she sipped something to see if the esophagus is healed and not leaky. Of course she threw up the stuff all over on the machine and fainted just to keep things interesting. :) She passed the test in spite of it all! So now she gets to sip water and camomile tea! So happy to swallow something after nothing for 8 days! It feels very strange and is ¨not that satisfying¨ but it´s all about a little at a time right now. She also got the 2nd abdominal drainage tube taken out (ouch!) and her first shower in over a week. :) Feeling very content. / El gran evento hoy fue hacerse una radiografía especial mientras tragaba algo para ver si el esófago está sanado y que no pierda. Por supuesto vomitó sobre la máquina y se desmayó para que todo sea más interesante. :) Pasó la prueba! Ahora puede tomar sorbitos de agua y té de manzanilla! Está feliz a tragar algo después de nada por 8 días! Da una sensación rara y ¨no te satisface igual¨ pero tenemos que ir poco a poco ahora. También le quitaron el segundo tubo de drenaje del abdómen y se dió su primera ducha en más de una semana! :) Se siente contenta.
9 Feb 2014 Got to a private room last night! Yahoo! A big change for her and she is happy. Far less wires and tubes. There is still lots of pain & nausea that they are trying to control. Today they took out her catheter and one of the abdominal drainage tubes so that´s a relief. She got to sit up for the first time and take 2 steps to a comfy chair. Gotta celebrate each step! Read Psalms to her, listened to music and she fell asleep. :) / Llegamos a una habitación privada anoche. Yahoo! Es un gran cambio y ella está feliz. Hay mucho menos cables y tubos. Todavía hay mucho dolor y nauseas que están tratando de controlar. Hoy le quitaron una sonda urinaria y uno de los tubos abdominales de drenaje así que eso fue un alivio. Pudo incorporarse por primera vez y to mar 2 pasos a un sillón cómodo. Celebremos cada paso! Le leí varios Salmos, pusimos música y se quedó dormida. :)
8 Feb 2014 The Drs say Jenna is ready to go to a regular room. They have weaned her off the stronger pain meds, oxygen and all of her vitals are good and her blood work as well. She looked so much better today...much more awake and starting to smile. She can now rinse her mouth with water and spit it out - her big treat! (Before that the highlight was sucking on a piece of wet gauze!) / Los médicos dicen que Jenna está lista para ir a planta. Le han quitado los medicamentos más fuertes, oxígeno y todos sus vitales están bien y su analítica también. Se veía mucho mejor hoy...más despabilada y empezando a sonreir. Ahora puede enjuagar su boca con agua y escupirlo - algo muy especial! (Antes que eso lo más especial era poner una gaza mojada en la boca!)
6 Feb evening: Jenna is progressing but they have her pretty sedated because of the pain. She has a bit of fever tonight & is on extra oxygen. Everything else is good. She´ll be in ICU until Monday. I miss her smile.... / Jenna está progresando pero la tienen bastante sedada por el dolor. Tiene un poco de fiebre esta noche y le están dando oxígeno. Todo lo demás está bien. Va a estar en la UCI hasta el lunes. Extraño su sonrisa....
6 Feb 2014 After an afternoon with a lot of pain & nausea, they seemed to find the right amount to relax her and that let her sleep last night. Thankful. They gave her more blood (3 bags and 2 of plasma) and she is looking stronger from that. Last night we got to take Jordan and the two of them smiled and smiled! Such good medicine being able to see each other! She was relaxed and peaceful but open-eyed and talking a bit more. Today she was very sedated and didn´t say much...they are trying to find the right balance for her. She is progressing & everyone says she´s a great patient. :) / Después de una tarde de mucho dolor y nauseas, parece que encontraron la cantidad justa para relajarla y eso le dejó dormir anoche. Agradecida. Le dieron más sangre (3 bolsas y 2 de plasma) y ella se ve con más fuerza. Anoche pudimos llevar a Jordan por primera fez y los dos no dejaban de sonreirse! Una buena medicina poder verse! Ella estaba relajada y tranquil pero con los ojos abiertos y hablando un poco más. Hoy estaba bast ante sedada y no dijo mucho ni abrió mucho sus ojos...están buscando el equilibrio justo para ella. Está progresando y todos dicen que es muy buena paciente. :)
5 Feb 2014 Last night Jenna was peaceful and had great color in her cheeks; she was the most beautiful patient ever! They let us see her from 1-2pm and from 8-9pm. Today during our visiting hour she was in pain and had a lot of nausea. They are working to find the right balance of meds to keep her comfortable. The Drs are pleased with her progress but she will remain in ICU for a few more days. / Anoche Jenna estaba tranquila y tenía buen color; era la paciente más hermosa jamás! Nos dejan verla de 13-14hs y de 20-21hs. Hoy durante nuestra visita ella tenía bastante dolor y muchas nauseas. Los médicos están viendo cual es el equilibrio justo para que esté cómoda. Los médicos están contentos con su progreso pero debe quedarse en la UCI para varios días más.
4 Feb 2014 Had a bit of a scare today. We were heading in to visit Jenna when we got a phone call from a Dr. in the ICU. He said Jenna was bleeding and it looked like they would have to open her up again. We rushed up there and fortunately were able to see her before they wheeled her into emergency surgery. It was sooooo great to hold her hand, kiss her forehead and pray in her ear. She said little, was feeling really weak from the loss of blood and the whole operation but said a few things. The operation didn´t last long; they found a bleeding artery, closed it up and she stabilized. We´ll get to see her later when she´s awake. / Tuvimos un susto hoy. Estábamos llegando al hospital cuando un médico nos llamó de la UCI. Dijo que Jenna estaba sangrando y parecía que iban a tenet que intervenir otra vez. Subimos volando y afortunadamente pudimos verla antes de que se lo llevaron al quirófano urgentemente. Que lindo tomarla la mano, besar su frente, orar en su oído! Ella dijo poco, se sentía débil de perder sangre y todo la internvención el día anterior pero dijo algunas palabras. La operación duró poco; encontraron una arteria que estaba sangrando, lo cerraron y ella se estableció. Vamos a poder versa más tarde cuando se despierte.
3 Feb 2014 Jenna underwent the gastrectomy yesterday and the Drs were really satisfied with the clean work completed. In addition to removing the stomach which held the primary cancer, they found 3 other small (less than a centimeter) tumors in various places and took them out. They searched everything within her abdomen for any other traces and then administered the local chemo wash. They took her at 9:30 and we didn´t see her til 8pm in ICU. She was still asleep so we are looking forward to seeing her today! / Jenna se sometió a una gastrectomía ayer y los médicos estaban muy satisfechos con el trabajo limpio completado. Además de quitarle el estómago donde estaba el cáncer primario, encontraron 3 otros pequeños tumores de menos de un centímetro en varios sitios y se los quitaron. Buscaban por todo su abdómen por cualquier otra muestra y después le administraron el chimio localizado. Se la llevaron a las 9:30 y no la vimos hasta las 20 horas en la UCI. Todavía estaba dormida así que tenemos muchas ganas de verla hoy!
31 Jan 2014 We met with 2 oncologists this morning at the hospital. We were able to discuss the findings of our second opinion from MD Anderson Madrid and hear the rationale for what they are presenting us. We felt really good about what has come together and are moving forward. This plan is in today's post. / Nos reunimos con 2 oncólogos esta mañana en el hospital. Pudimos hablar de lo que escuchamos ayer en la 2da opinion de MD Anderson Madrid (un centro para cáncer) y escuchar sus razones por lo que nos presentan. Nos sentimos bien de cómo ha salido y vamos adelante. El plan está en el post de hoy.
30 Jan 2014 We traveled to Madrid today to meet with 2 Drs. at MD Anderson, a Surgical GI surgeon and an Oncologist. They were great and gave us some new information that was helpful and that we will discuss with Jenna´s Dr. tomorrow morning. / Viajamos a Madrid hoy para reunirnos con 2 Drs en MD Anderson, un cirugano digestivo y un oncólogo. Fueron buenísimos y now dieron nueva información que nos ayudó y que vamos a charlar mañana con el Jefe de Oncología.
23 Jan 2014 We decide to get a few other opinions and get two by phone and e-mail. We set up an appt for MD Anderson in Madrid for the 30 Jan to get a specific cancer center opinion. / Decidimos buscar algunas otras opiniones médicas y obtenemos 2 pro correo electrónico y teléfono gracias a algunos contactos personales. Sacamos otra cita en MD Anderson en Madrid para el 30 enero para obtener una opinion de centro especializado en cáncer.
22 Jan 2014 The other part of this meeting was discussing the treatment plan: the medical team still feels that the only cure is a gastrectomy (take out the whole stomach) and then chemo. / La otra parte de esta cita fue discutir el plan de tratamiento: el equipo médico todavía siente que la única cura es una gastrectomía (quitar el estómago entero) y administrar quimio.
22 Jan 2014 We meet with the Dr. who gives us the good news that there is NO MORE CANCER other than what we already know about - stomach and the original umbilical tumor! So thankful! / Nos reunimos con el Dr. quien nos cuenta la buena noticia de que NO HAY MÁS CÁNCER de lo que ya sabíamos - el estómago y el tumor umbilical original. Muy agradecidos!!
21 Jan 2014 Jenna does a PET Scan, which searched her whole body for any cancerous activity. / Jenna hace un PET TAC, que buscaba su cuerpo entero para cualquier actividad cancerosa.
14 Jan 2014 Jenna undergoes an exploratory laparoscopy and thankfully, only a small dot on her diaphragm was seen. They also biopsied her abdominal liquid and that later came back negative. But this was also the day they confirmed the biopsy of the stomach ulcer: adenocarcinoma - the same cancerous cells that were found in the umbilical tumor. / A Jenna le hacen una laparoscopia exploratoria y gracias a Dios, solamente un puntito fue visto en su diafragma. Tambien le sacaron líquido de su abdómen que más trade salió negativo. Pero también fue el día que confirmaron la biopsia de la úlcera de su estómago: adenocarcinoma - las mismas células cancerosas que habían sido encontrado en el tumor umbilical.
10 Jan 2014 Under general anesthesia, Jenna undergoes a colonoscopy and gastroscopy. This was the day they found something. The Dr. was quite convinced they had found an ulcer with a cancerous profile in her stomach. After she was up, we met with him and that was the first day it really hit us that she had cancer. / Bajo anestesia local, le hacen un colonoscopia y gastroscopia. Esto fue el día que encontraron algo. El Dr. estaba convencido que habían encontrado una úlcera con un perfíl canceroso en su estómago. Cuando ella se había recuperado, nos reunimos con él y eso fue el primer día que nos dimos cuenta que realmente tenía cáncer.
23 Dec - 9 Jan 2014 Tests, tests, tests!/Pruebas, pruebas, pruebas!/various MRIs, bloodwork, sonograms, Gyn exam, GI tests (yuck!!) / varias TAC, analítica de sangre, ecografías, cita ginecológica, pruebas del sistema digestivo (que asco!)
20 December 2013 The Dr. tells us her biopsy was sent for ¨additional studies¨. / El doctor nos dice que le enviaron su biopsia porque le tienen que hacer ¨más estudios¨. Hmmmm...
5 December 2013 Jenna´s umbilical tumor is removed under local anesthesia. / El tumor umbilical de Jenna está quitada bajo anestesia local. 4cm!!
Photo by: PixelSmithy
**It seems like the right time to end this section of the blog since it´s focus was medical updates & details about our life here of interest to family & close friends. Since Jenna is now gone on to heaven, there is no more need for medical updates! We are so thankful that she no longer suffers but is enjoying the most mind-blowing, unimaginably beautiful experience of life ever after with her King and all who have walked before her. (The Latest: 5 December 2013 - 19 October 2014)
25 Oct 2014 It´s interesting that there seems to be a stirring of things we are hearing about of what God is doing through Jenna´s death. Various stories are trickling in, confirming others and some dreams and visions are also being confirmed. The youth are holding an event to remember Jenna and to consider her legacy to them. Wow. I will try to find ways to consolidate these and share them in some form here on the blog...In the meanwhile, I will post reflections on our process during this time of grieving & pray that it will be of comfort to some others, too. We are so thankful for the continuous outpouring of love & support during these difficult days. We are so thankful for Jenna´s life...
24 Oct 2014 This morning one of the last big medical things is going - the oxygen tank and machine & supplies. Bruce took the wheelchair back to Alfredo last night and except for some smaller things, we are getting back to normal. Dani wants to research all of the natural things we have on hand to see if they can be useful for us...I know a lot of them can but some of the homeopathic things are very specific to Jenna´s case so I am unsure what to save and what to toss at this point.
It has been a challenge to understand each other´s grief process, at least for Bruce. He was grieving deeply since he got back from AZ watching Jenna decline so quickly. He is a doer and so it is natural for him to stay busy - and perhaps to think we all want to be busy & with people, too! It´s been interesting for us to see Dani, so extroverted, be so introverted in her grief and need solitude and quiet so much. It has Bruce worried that she´s been in her room so much but I see that she´s doing lots of art, lots of crying and coming out for hugs and the occasional cup of tea and snack. She finally had lunch with us all today and I am glad to see her coming out more and more.
Jordan has his ups and downs but is certainly not living it like Dani. He prefers to be busy & distracted but when he´s here he often cries as well.
I feel like I haven´t even realized what has happened yet. Am I floating on prayers? Still in shock? Numb & exhausted? It´s not like I haven´t cried but I certainly don´t feel anguished or desperate or even depressed. Sometimes I worry about crashing...when will that happen? What will it look and feel like?
I pray we can learn to communicate better during this, perceive what we need, state it clearly and then respect each other´s ways. Then there´s that fine line as a parent between encouraging & pushing... We´ve never quite done this before & so we´re all hurting and all clueless!
23 Oct 2014 Today they took the bed away and poor Dani was still asleep in it! I had meant to awaken her sooner (she knew they were coming) but they were more punctual than I had expected. She lept out of bed and after it was gone began to reorder the room...blending hers and Jenna´s things and moving some things out. Bruce helped her move out a mattress and move in Jenna´s desk and then Dani spent most of the day working on that with music in the background. Her dear friend Katie came over to be with her for a while in the evening and I was so grateful.
tricia and I worked on the floral wreaths and bouquets a lot of the morning, pulling out the dead carnations in order to save the wreath-frames, rearranging flowers that were still good into new bouquets, pulling out every possible container I had, cutting stems and changing water and I was really happy with the result. The house is starting to recover some normalcy in its looks. I am happy to have another woman around the house, to fill the space, to be a supporting presence.
Jordan came home from school today sad and collapsed into my arms sobbing. Who knows why some days it hits you harder than others? He didn´t want to go to fútbol and decided to take off on his bike. He was gone for several hours and I had to track him down. He had gone straight to his friend David´s house, crying the whole way (he told me this later) and went into their house to talk to his friend and cry together. They are so sweet and David has been a good friend. Then he went to Nathanael´s house and I´m glad that he has people he can turn to and that are of comfort to him.
Bruce and I had a skype call with the Area Directors of our organization who are meeting in South Africa right now. We weren´t able to be with them but we shared with them this morning about the recent events and some of the intimate things that have gone on. What a wonderful group who has cried & prayed with us for months now. Many of them cried with us today; I couldn´t see them but I could hear them. They gathered around the computer there and prayed for us and it did us both so much good to be supported.
Amy asked for tricia´s help in some redecorating at her house so she came over to get her and brought her back around 9:30. Bruce had gone off to pray with Alex and Alfredo who have decided to keep fasting one day a week together although now they no longer have to cry out for Jenna! Tonight they were praying for the ¨sacred trust¨ of Jenna´s legacy here and how to steward and honor that. Such dear men...
22 Oct 2014 These days are kind of a blur and I am writing retroactively but the details all don´t really matter so much. Today I tried to start going through some of the medical stuff that has been occupying so much space at our house and that is not hard to get rid of - I don´t want to remember all of that. I called Cudeca to see when they can come get the meds they left here since they are valuable and dangerous - I don´t want morphine sitting around this house!
I separated some medical things for Lidia our dear nurse friend and divided it up between what the hospital could use (especially all of the paraphanelia related to nutrition) and what could be useful in hospice for Cudeca and the rest that wasn´t usable for others, I tossed. Later on that day, Bruce and I went to the hospital loaded down with IV pole and 2 infusor pumps, 2 boxes of supplies for the Endocrinologist and 2 bags of supplies (unopened & in perfect condition) to the hospital pharmacy.
It was strangely comforting to be at the hospital; everyone we ran into already knew our news and was so sorry with us and for us. There are still so many people I want to thank and say good-bye to there that I´ll go over another time and see who I can find. Everyone was rooting for her and is saddened that this happened to one so young. I thought I wouldn´t want to even see the hospital again...but it was like being in my second home from this year and I know it inside and out now...and so many, many people who have greeted us daily, helped us, pulled for us, done favors for us, blessed us. The hospital community has become one of my circles of friends & acquaintances.
Jordan bravely went to school today and he said it did him good to be distracted. Reme came over to be with Dani and I am so glad for her and Katie to be seeking her out right now.
We had lunch again with Ralph & Joyce and had a lovely time sharing & remembering. They had some good insights & counsel (as always!) and as I look back over the years, I can picture times with them in Argentina, Morocco, the US and Spain. They have walked with us for a long time...and continue to bless us.
Dear tricia has been listening and cleaning and tending the tons of flowers we have here in this house...we had no idea she would be here for this particular time. I want her to feel useful & busy but sometimes I just need to be in my room or with one of the kids...oh how I pray that her sitting with us will be blessed!
21 Oct 2014 The day after. We realized last night at 10:30pm that within 36 hours we had received hundreds of people, had a memorial service and cremated her body. Actually, the cremation was after the service and was going to take 3 hours so we didn´t wait around; Bruce will go back tomorrow morning to get the ashes and later we´ll decide what & where & how we´ll do that. Everything happened so fast that our heads are still spinning...
The kids and I slept in, our bodies heavy with fatigue and grief. Somehow, in spite of not sleeping well through the nights, Bruce was up and out to visit with our dear colleagues who had come from our organization to be present at the funeral and with our team for a few days. My heart was torn with simultaneous emotions of wanting to be with them and wanting to be alone. Of wanting to talk and wanting to be silent. Of needing community and needing solitude all at the same time...
Bruce also had coincidentally his cousin & wife (from California) in Málaga for a business appointment and again, I have felt the same mixture of emotions of wanting to honor them and be with them but needing to be home, to be close to my kids, to be true to my heart. Such dear people but so little strength for me...Steve has been the caretaker of Bruce´s parents will and funds and has done so much for us...yet I felt weak at the prospect of conversing. Bruce, on the other hand, seemed to welcome the distraction and I realized this grief thing was going to look very different for each of us...
My dear Dani was holed up in her room...Jenna´s room...and didn´t emerge all day. Katie came midday and I found them curled up together on the bed in silent Shiva together. Very precious and heartbreaking all at the same time.
20 Oct 2014 Today seems unreal. This morning I was working on a program for tonight's service / just getting together content and Katie and Kory were laying it out and getting it printed. I wrote out what I wanted to read at the service (although earlier I was unsure if I wanted any participation). It all went by fast and before I knew it it was time to get ready for the visiting time. Dani doesn´t want to go at all, so I arranged for Dora to pick her up for the service.
Bruce and Jordan had gone over to the Sala to receive people again at 2pm. I got there at 4pm with tricia, Ted & Claudia. I was so surprised to see Ralph & Joyce from our organization, having just arrived from Colorado just to be by our sides! Wow. They brought tons of hugs & kisses from all the people there. There weren´t too many people when I first arrived but by 4:30 it was like the night before, just so full. I was blown away by the many people who came from all over and many were repeats from the day before. We were busy hugging & kissing and tearfully sharing up until 6pm when we went over to the chapel for the service.
The chapel was full and I don´t know how many were there but there were hundreds. The sound was great up front where we were but later people from the back said it was hard to understand (it´s a big marble chapel with terrible acoustics). Our musicians had brought their own sound (thank you, Ivan!) and did a great job. (Eugenio on keyboards & vocals, Helena on flute & vocals, Dixon on the caja, Craig on acoustic guitar and Daniel on bass. Such an honor to have them do that for us. Nuria joined them later with vocals.) We sang Oceans and 10,000 Reasons and later Nuria sang My Redeemer Lives (all in Spanish). Pastor Cristóbal spoke from Job and did a great job, plus he was our MC. Dora presented a Blessing of Jenna´s Legacy, Amy a Crown of Honor (a vision she had from God for Jenna) and Alex spoke on a Living Hope in Grief. We were only supposed to have an hour in the chapel and it went longer but because it was the last service of the day, they gave grace. Bruce spoke from the Heart of a Father and I spoke on a Severe Mercy. Karima prayed in French & Arabic and Ted closed in Spanish. (We will publish the video ASAP.) I think Jen was really happy...
They traditionally then carry the coffin out and we (the family) went out to the front of the chapel where we were hugged & kissed one more time by hundreds of people. So much love...I was amazed at all the people who returned again a second day to see us including Jordan´s classmates, teachers, director, coach and many other friends and neighbors. We were very surrounded & carried by people´s heartfelt common sadness and love for us.
Story after story surfaced of Jenna´s impact on others and Bruce and I are profoundly grateful, proud and humbled to have had her for our daughter.
That night her body was cremated but because it was going to take 3 hours, Bruce came back the next day for the ashes. We will decide on what to do with that when it seems right. We know she wanted to be sprinkled over her beloved Mediterranean.
Just before leaving, we went to a place to collect all the wreaths of flowers and wow! what a haul! It took Eller´s and our vans to take them all away. Raquel y Tomás took some home and Laura helped distribute some for us to those who had participated in the service or worked on things for us. I was so happy to bless others with these beauties...
We got home exhausted again, ate a light dinner and stumbled to bed. As Bruce & I prayed with the kids, it was so weird to not be praying for Jenna and to only be 4...Oh, how we will miss her! Our hearts are all aching.
19 Oct 2014 Our dear Jenna went to heaven peacefully in her sleep this morning at 10:30. She is with the Good Shepherd who has walked with her faithfully this long road. We are so thankful to you for your deep love for us.
Such a surreal day...Lida and Dani had slept with Jen throughout the night, checking on her, giving her meds when necessary, etc. Bruce peeked in at 8am and Dani had woken up at 8:30 and checked on Jen. Lidia checked at 9:30/45. I woke up and showered and around 10:20 peeked in the room. Both Lida and Dani were sleeping but Jenna wasn´t moving. I first thought maybe her breathing had improved and she was being healed but I made my way around the beds to check. She wasn´t breathing and I searched for a pulse then woke Lidia to confirm. When she confirmed it, I woke Dani then went downstairs to tell Bruce and tricia and Antonio (Lidia´s husband who had also spent the night at our house). We got the beds out of the way and Lidia turned off the oxygen and checked the time: 10:25am. Her head was still warm so it had just happened and she had been peacefully sleeping.
We spent a long time weeping and kissing her and holding her hand, caressing her arms that no longer held us. Dani began to brush out her beautiful hair. She wasn´t there any more....but her body was all we had left of her. We were so glad she had no more pain, that she was with Jesus, that she no longer suffered or struggled to breathe...but oh! how our hearts ached!
We made a few phone calls and our teammates & close friends & pastors were very quickly there. Her Oncologist was going to come visit her & I texted him and he came anyway to kiss her one last time, to give the family his condolences and I know his heart was so hurt at having lost such a dear patient.
Then we did a really crazy thing. We took our faith out to the last possible minute. We called our pastors who had asked us if we were open to having her prayed for after death. They had 3 other people who had faith to pray for her to resurrect so while we had our last moments with Jenna, they were traveling to get to our house quickly. Eugene & Joy, Carolina, Dick & Ginny prayed and sang over her with great faith and Joy filled the room with flute music...I remember hearing My Jesus, I Love Thee....I was having mixed feelings, wanting God to do this great miracle for His fame and believing He could entrust her with it yet not wanting either to delay the inevitable grief or to use these prayers as a sort of ¨Christian denial¨ of what was the obvious, or even what was God´s will. I prayed that any of my doubts would not interfere with anything He might want to do...
After some time, there was a quieting and a stillness and Jenna remained where and how she was. They thanked God for her life and blessed us and slipped out, leaving our family there still gathered around her, touching her, crying off and on. It is a day you never want to see.
The medics came and Lidia gave them paperwork confirming her illness from the Dr. They confirmed her ID and her time of death and filled out some papers and left. Lidia, Dani and I began to take off some off her dressings, tubes, patches, etc. and then we put her in one of her favorite outfits. Then the funeral home men came, quietly, reverently, respectfully. They shook our hands and said we might want to leave the room since they had to put her in a body bag. By this time quite a number of friends had found out and come to the house and were waiting out in our patio. Alex had asked if it was ok to take some petals from the roses in the living room (which had been sent by Justine ¨to make her smile¨). He gave us each some and had given some to those out on the patio. As the man came down with the white body bag, everyone spontaneously began to toss pink rose petals over her as she went by. Some of us were in the living room and saw them come down the stairs and began to strew the petals as she was leaving the house. Others were on the porch and others were outside on the patio in the beautiful sunshine and kept tossing petals in the little journey out to the hearse. Nuria burst into song with her lovely, clear voice in Spanish ¨My Redeemer Lives¨ and a crowd walked out into the street, following her til the last second. I remained on the porch with some others where I could still see the scene - my dear one leaving with petals and praise, tears and love, trust and good-byes. Neighbors were watching and listening. It was a sad and lovely scene, bitter but sweet: death may be common but today there was an uncommon holiness. I wonder what the men who carried her out said to each other as they left. I hope they said, ¨She must have been really special...well loved...and from a family of faith.¨ And they would have been right.
By then it was probably 1pm and after that some
people left, new ones came, neighbors came to cry and hug and our dear team was
all around us. We began to do things for the evening reception of people
at the big Málaga Cemetery Park. We decided to receive people from 5-9pm
in a salon there which Emilio and Ivan had helped arrange. Laura had Dani
and I collect some memorabilia representing Jenna to decorate different little
tables in the salon. Katie & Timo worked on a slide show,
incorporating one Dani had been working on of Sisters, with other family pics
and later that was continually projected for people to see - everyone really
enjoyed that.
Tricia worked hard to keep us all hydrated and
Claudia later with some others served food to everyone that Raquel had brought
over. Everyone was buzzing around me with pen drives, computers, photos,
Jenna´s scarves and some artwork, etc. I don´t know what we would have
done without them.
We met at 4pm with Cristóbal, our pastor for many
years and Eugene & Joy, pastors of our current church, who were taking care
of the music and planned out the service for the next day at 6pm. We
rushed to change and get to the Sala 22 by 5pm.
It was hard to go. In many ways, Dani &
Jordan and I just wanted to be quiet at home and not have to face a bunch of
people. But culturally we didn´t really have a choice - and in the end we
were really glad we did it. Sharing love and sadness in community is very
healing and we were overwhelmed with the show of people and the many different
circles of people represented there...
When we arrived, already waiting at the door were
about 10 boys from Jordan´s class with their parents. I was so touched.
They gathered around him and hugged him and stayed for close to 3 hours.
Those Moms have been so dear to me this year, such a help and so sympathetic.
There were also about 6 people from my pool class (for our backs)!!
I was shocked and still don´t know how they found out. They were so
sweet.
They called me into the Sala and in a closed
ceremony, we did a mini ¨Graduation¨ service for Jen from APU. This will
get a whole separate write-up for its special significance, but essentially,
APU decided to award her her BA in Global Studies even though she lacked one
semester. Together the faculty and board decided she deserved it and her
lovely and beloved Anthropology professor flew all the way to Spain to see
Jenna (although sadly, she missed her by just a few hours) and to give her this
diploma on behalf of the university. What an honor! Dr. Frances Wu
spoke briefly about Jenna, they showed a video the President Wallace had made
and presented to Bruce and I her diploma. So special.
Then the doors were opened for everyone to come in.
People came in droves and poured out their love and condolences.
Neighbors, teachers, the Director of Jordan´s school, friends,
colleagues, children, young people, coaches, some people I didn´t even know.
I heard more stories about how Jenna had touched others and I treasure
those things in my heart as a mother. Laura had made the sala beautiful
and every corner was full of pictures of Jenna, candles, artwork, scarves,
dried flowers and different things representing Argentina, Lebanon, Spain, her
well-used Spanish Bible and her treasured FRench one...so precious.
There was a back area where the coffin was enclosed
in a glassed-off room. It was lit up and covered with floral wreaths with
sashes on them with a phrase representing who had sent them (they are all made
up right there on these grounds). There was a sash that read, ¨Miss
Valiente¨ (a nickname the young people had given her ¨Miss Courageous¨), From
Jordan´s Friends, To our Dear Jenna (from our team), one from our church
downtown and one from our current church in Alhaurin), one from Alex & Amy
about the ¨Crown of Honor¨ (which Amy spoke about the next day), even one from
my pool class companions and Dani´s fellow dancers from years back. We
were so blown away. What lovely people we know.
We stood for hours and if it weren´t for dear
tricia who gently kept pulling me toward a chair to sit for a moment, get some
water, have some protein bar, I maybe wouldn´t have made it all evening.
But people´s love was empowering and energizing despite our deep fatigue.
Lidia went and got Dani and I a tea and that really hit the spot.
Later Angela, a neighbor, brought Bruce and I a cold coke. :)
We eventually got home around 10:30, ate a light
dinner together after picking up Jordan at David´s (thank you, Patricia, for
the warm tortilla!), prayed over the kids and fell into bed. Poor Dani is
heartbroken and pulled her mattress onto Jenna´s bed, dressed in Jenna´s pj´s
and went to sleep hugging the t-shirt she had last seen her sister in. This is
going to be very hard...We prayed for peace, for sleep, for comfort, thanked
God for Jenna´s life, what she had brought to our family, and thanked Him that
she no longer suffered but was resting with Him. It was not easy to
sleep...
18 Oct 2014 A terrible and beautiful day at the same time. Holy moments, loving moments, piercing moments. Various ones coming to say good-bye, with tears and words of love...heartbreaking & moving. Thanking God for Lidia and her friendship & nursing skills, Alex & Amy and their support, prayers, listening, sitting with us, Dora who came to ¨bless Jenna´s legacy¨, tricia who flew from California to be with us, Laura who is doing airport runs for us, friends who are cooking for us....and in the midst of it all, Jenna´s brave spirit, efforts to respond to us and our both broken & full hearts of love for her and one another. We pray His will, which always reflects His Shepherd´s heart, will be done gently and that it will bless those who are watching...
17 Oct 2014 Our first full day with Jenna at home. She was in some pain last night and we had been to a variety of pharmacies trying to fill prescriptions but no one could have it til the next day. The Oncologist thought that with the sleep med she would be ok but it seemed to make her nauseous and she threw up a few times (like she has strength for that). I even went over to the hospital to meet with the Pain Unit and he gave me another Rx but I couldn´t get that one filled either. I did pick up her nutrition which at this point is mostly to keep her hydrated.
Bruce slept next to Jenna at Alex´s insistence (our friend & counselor) since Dani & I were so exhausted from nights at the hospital. He wasn´t a whole lot better off since he´s still on jet lag! Dani slept with me and Bruce woke us up only when she needed to go to the bathroom. It is really hard to move her & she can´t help much. She spent mot of the day sleeping and didn´t have any longer times of being alert and all of us talking.
Around 11am a Dr. and nurse from Cudeca came and that was great. We got all the meds sorted out and changed the ones that seemed to make her nauseous. They had lots of stuff on hand and got everything organized for her to be as comfortable as possible. Lidia was here as well and knew the nurse. She has been an angel! She ended up being with us a lot of the day, going to the pharmacy, the orthopedic store and training mostly Dani in all the meds. The medical team from Cudeca is great but it´s pretty barebones; if it weren´t for Lidia, I don´t know how we would have made it. She is even spending the night with us - right at Jenna´s side.
Somehow our teammates appeared with some meals from friends and a smaller AC unit. We ate so well today; I feel so blessed.
Dora was over again today and spent time listening to me, praying for Jenna and cleaning a guest room for a dear friend who is arriving tomorrow to help us for a couple weeks.
We also had a weird conversation with our pastors and Ivan our teammate about memorial service plans...I can hardly believe we have to talk about that but we do. We need to know who to call and what to do and to have things in place since things happen quite fast here...I love the faith of Eugene & Joy who asked if we were open to thinking about praying for Jenna to be raised from the dead! I laugh as I think about what a hit that would be to Satan here in the western world!! Of course, there is a time to accept death and God´s will in that, but since so many different sources have mentioned Lazarus, I say, why not??
Don´t think with that thought that we are refusing to accept this process or not grieving; our days are full of tears, sitting by her bedside bawling, prayers - whispered or loud, recalling memories and beautiful things about her and in general, preparing ourselves in some raw way for her to potentially be taken from us for reasons we cannot understand.
16 Oct 2014 Today was stressful as we were trying to come home but there were still some things in the air. I was trying to order oxygen and it looked like it wasn´t going to be able to happen today. In the end, the Oncologist got on the phone and I´m not sure what he did but we got oxygen at home finally.
It was a lot of work to get everything ready to leave the hospital, including Jenna. It was not easy to transport her because of her pain and because she is carrying so much liquid weight. But we finally made it home, got her oxygen hooked up and then got some rest. It was a rough night in the hospital; it´s been hard for all of us to sleep (except for maybe Jordan!). Tonight Dad is sleeping in Jenna´s room with her, Dani is sleeping with me and Jordan is on his own bed instead of on the floor. Lord willing, we will all get some peaceful sleep without nurses coming in on us.
So many blessing during the day...Kory & Laura in the am, Alex & Alfredo & Bruce praying for Jen on their fasting day for her, Ted & Claudia brought by dinner, Dora came by to pray blessings over Jen and Lidia came over with Antonio to talk about medical stuff and affirm her desire to help and be available. We have such amazing friends...
So we are all home! The oxygen tank is LOUD. So is the AC we borrowed from a church which is actually for a much bigger room. At least for tonight she is comfortable; tomorrow we will do some fine tuning.
15 Oct 2014 Could a family cry out more for the life of a child?? Could friends intercede more for a young woman than they have for Jenna?? With all the tears shed in our family alone, it would be hard for me to believe.
Tomorrow we are bringing her home. To die? I don´t know. To be among those who love her most? Definitely.
We see her physical decline every day. We grieve. But not as those who have no hope.
Last night they put her on oxygen. Her movement is difficult and today she didn´t leave her bed. She is losing her voice and she is so very tired and weak. Whenever she is awake, we try to be there to talk, pray, listen, look at photos, cry, hug, kiss, say the things you should say.
The Drs. have moved to get things in motion for her to leave tomorrow. This has necessitated a change of form for some meds. Her pain med is now in a patch on her shoulder instead of by IV. We will make sure that this is working well before leaving tomorrow. The hospice care will monitor some other things she needs to take as well. We also need to arrange for oxygen at home.
This has been both the most terrible time and the most beautiful time as a family. We have loved on each other so hard this week, cried and prayed like never before, exchanged forgiveness (as if anyone cared about anything anymore) and spoken words of love and remembrance and sadness and surrender.
Today we had the blessing of having Dora walk through some forgiveness things with us 3 women. It was especially important for Jenna to have no regrets. Dora is amazing at working in beautiful ways with the Holy Spirit in spite of Jenna´s limitations.
We also got to spend time with Alex, dear friend and psychologist who helped talk us through what the end could look like, what to expect, how to prepare, etc. He has met daily with Bruce in the am´s to talk and pray and grieve. What would we have done without these two and so very many other dear angels?
Dr. Hernandez came by again this afternoon and we continue to call him ¨angel¨. He is an amazing Dr. who has shown special interest in Jenna, comes by on his own time and is literally the only one who has ever shed tears with us. He is a dear.
We had a couple special visitors today and at the end of the day we gathered again to cry out for Jenna's life as a family. The kids and I are all staying here and tomorrow night we will all be at home together. :)
14 Oct 2014 It´s amazing the changes we notice in Jenna. You can see a daily decline. It will really take the most amazing of miracles. I pray He will entrust one to her.
The pain has finally stabilized. She is still swollen and diuretics don´t seem to make a difference. Her Dad loves to go to Burger King to get her shaved ice chips. :) She is so hot that we have the AC on and while all of us are freezing, she is in shorts and a tank top and sipping on ice chips!!
Her movement is really labored as is her breathing. We have to help her with everything. So hard to see and live. She is tired all the time now and is sleeping a lot. But she is aware of what is going on around her...
We talked with various Drs this afternoon and tomorrow will talk with someone from the Pain Unit to discuss her options for pain meds at home.
13 Oct 2014 Today was a holiday here and we let out on fb that we would do 2 visiting hours: 12-13 and 18-19hs. This was a lot of people (around 30 per hr) but it allowed her to see a lot of people in a short amount of time. It was very tiring, however, and after the 12-1 shift, she slept for 3 hours!
We so appreciate all the special friends who came to cheer her up and say their good-byes. Bruce & I were greatly encouraged to see such an outpouring of love and affection.
Jordan was with some friends at a birthday party during part of the day and came back early evening to the hospital. Before he was to leave to go home with Dad, we prayed as a family and wow, what a climactic time that was. Neither Bruce nor I have ever heard our kids pray like that before. I don´t think we have ever prayed like that before either. Some of my reflections are recorded in the post ¨If I Were God¨.
The internet here is lousy and I lost 2 days of updates because it dropped out before I saved it. I´m trying to remember things but will probably have to add to this later...
12 Oct 2014 Today Jen seems a little better. The Oncologist said her liver counts are slightly better & her kidneys are good. (We were a little worried about them when her lower back was in so much pain.) On the other hand, I wasn´t there and he tries to be very optimistic and culturally isn´t always open in front of the ¨kids¨ - even though they are both ¨of age¨. I am staying here tonight with Dani to be sure to see him in the morning. Being a long weekend, staff is more scarce and we only get one shot at him per day.
Jen´s legs and lower back are still swollen and although they´ve put her on a diuretic, I haven´t noticed any change in that. They did say she was low in protein and that could contribute to it. What I´m unsure about is more what they´re NOT saying...
When asking about home care/hospice, the hospital recommended the same place that others have to us - CUDECA - and hopefully by Wed or Thurs we will bring her home and have medical support there. It´s been good to be here and work through what she needs at this stage...although I´m sure things will continue to change.
We are all going through a wide range of emotions and have snapped a few times at each other. We need lots of grace & love right now...as well as respect for each one´s individual process.
Jenna has received some special guests today, all from high school. Maria, Amritha and Lucas all came by for a short time and we were so touched at their efforts - all are in university and travelled from Madrid and England to be here to see her. Am & Lucas put together a video of their graduating class (7!) all sending her well wishes and memories...so touched. We also got to see some long time Argentine friends, the Falcos, and a couple of our teammates. Other than that, we limited the visits and Jenna was quite tired out.
We are requesting for Jenna´s well-being that all visitors call or text to make arrangements before coming. We will be posting some general ¨visiting hours¨ since this hospital doesn´t have any as a way to protect her and reserve her best energy for healing and her immediate family. This is very stressful for us to do, but she does not have strength to see everyone.
If you are more friends of Bruce & Pam, we need & want your support BUT you may not be able to see Jenna depending on how she is. We know our kids are an extension of who we are but we ask that you respect her wishes & need to prioritize at this point. We will be happy to meet with you outside the room, talk & pray and receive you but we want to give HER the priority to decide who she most needs to see and say good-bye to.
Please understand that we wish YOU COULD ALL BE WITH HER AND US ALL THE TIME YOU WANT but it is just not humanly possible. With the uncertainty of how much time we may have left with her - short of a miracle - we have this difficult task set before us of setting boundaries. We so appreciate your love & support and respect of these wishes at this time - more than you know. You show great love for us during this emotional time by honoring this. Thank you.
I wasn´t feeling well at all by the time we went to the hospital...not sure why I was light headed, sick to my stomach and feeling really weak. It went away later in the day. I do have to be careful to eat with all the distraction & emotion going on.
Jenna was really anxious for us to get there and although Cristi and Sonia were still there when we got there, she really was yearning to have her family around her. She wasn´t feeling great, struggled with more pain today and had a lot of swelling and pain in her back. She also felt some liquid in her right lung. The ER Dr was sent up and he checked her out, confirmed the liquid and requested an x-ray which the did later on right in the room. I feel nervous about the meaning of the edema but she did seem to respond a bit to the diuretic they put her on.
I didn´t get to talk to any Drs today except the ER Dr whom I had never met. Her Oncologist came really early and the girls were still in bed and not super coherent. Whatever he had given her to help her sleep was a total fail since she was awake between 1-4am! By the late afternoon, she was in a lot of pain and I am feeling frustrated about managing her pain as there are changes in it and it´s the weekend with reduced staff!
The highlight of the day was meeting with Alex and Amy to talk about our process (they were SO helpful), the emotions of it, how to plan for visitors, how to help Jen think through what she wants...and then praying with Alfredo who joined us, then Abraham, Mayra & Rebecca who happened to overlap! We had a beautiful & powerful time of prayer. I was so peaceful after that.
Jenna was really tired after that and Tomás and Raquel dropped by just as the others were leaving. They are avid intercessors for her and friends and it was hard for us to tell them she needed to rest but we did. They were sensitive and left fairly quickly - but not before blessing us!
After that we needed a bit of quiet and while Jenna rested, we were on our phones & computers trying to catch up (impossible right now). By recommendation of Karima, we had communion together and that was special.
Bruce, Jordan and I came back to the house and Dani is staying again with Jenna. I pray she has a better night...people are literally praying everywhere for her...how can something amazing NOT happen??!!
10 Oct 2014 Surprisingly, Jordan wanted to go to school, so he and Dani took off early. I think he really wanted to be among his buddies at this time; he was communicating with all of them yesterday´s news. Dani wants to take next week off to be with Jenna and the Director is encouraging her to do so.
I helped Jen with a shower, received our pastor Cristóbal and Fernando from our church of 10 yrs and were so blessed to have Dora come by and pray. Then there was the typical unending parade of nurses & Drs...
The kids came back early at 12:30 and Alex picked up Bruce at the airport at 1pm and brought him to the hospital. It was a sweet reunion and such a relief for us all...yet we relived a lot of the emotions from the day before in all the retelling. He got to talk to the Oncologist and get more up to speed on what was happening. We are still figuring out meds for Jen and she still has to ask for things but today was better.
Her ankles are swelling; it could be from all the laying around and/or the lack of proteins in her nutrition since she went close to 3 days without it. Not sure if it could be anything else...
The amount of phone calls, messages, texts, emails, etc., etc. is overwhelming and we are sorry if we can´t answer each one! We need to be present to one another right now...
Jordan went to a b-day party in the evening and ended up spending the night at a friend´s. Bruce and I went back to the house, completely spent. He was jetlagged and I was crying from all the emotion & exhaustion. It was really hard to fall asleep.
9 Oct 2014 How to put this day into words?
They are finding the balance with pain meds and although Jenna has to ask for the next one most times, she is much relieved and is sleeping a lot. Since pain was the most critical thing, we are all happy that it is being resolved.
The oncologist wanted to talk with me in his office. We all know what that means - not good. He said her situation is very complex and desperate. She is very critical. In spite of the PET scan and bloodwork for tumor levels being negative, the biopsy of the liquid taken from her abdomen came back positive. The sky-high liver counts are due, they believe, to tumors. Oh how I longed to have my husband by my side!
He believes she has 1-2weeks to live.
Thank God our dear friends Alex and Amy were with me when this news was communicated. They were with Jenna while I met with him and stayed on with us for quite a while. Then our teammates started arriving...what would we do without Ivan y Lorena, Kory & Laura, Kyle and Nell? They are all angels to me. Later they communicated with Ted & Claudia who are currently traveling in Brazil and they called me, too.
I finally got a hold of Bruce who is 9 hrs behind us in Arizona. What a relief! He was as shocked as we had been. We cried and prayed and talked. He was thankfully able to change his ticket to leave today and so will be with us tomorrow midday.
I had the difficult task of communicating this with Dani and Jordan. We are all broken hearted but trusting at the same time. Jenna is so full of love for us and we can´t imagine life without her or our family unit without her...
I spent a lot of time with people, my children, Drs & nurses and on the phone today and I am just now getting to the blog to let all you dear ones know...How I wish I had better news for you who have been by our sides constantly in all these months! I pray God will reward your love & sacrifice...
We all slept at the hospital, Jordan on cushions on the floor, me on the couch and Dani on sort of armchair that leans back. Such a sweet, sweet feeling. Jenna LOVED it. :)
8 Oct 2014 A most unhappy night. Jenna wanted to sleep with me last night but she was never able to go to sleep. The pain in her abdomen just kept escalating until it was unbearable and I finally took her to the ER where they put her on a pain med and admitted her. It was a rough night. They finally got some relief with morphine in a shot form and are alternating it with things less strong.
I was so disappointed. When she woke me up to tell me how bad she was, I started praying hard for her but it was to no avail. How do you explain that? We had to go anyways and today we missed going to Budwig just when I felt so close to some progress! Now we are here in the hospital at the mercy of traditional drugs. (Although since her pain was so great, I´m not against using traditional!)
The main things today has been managing pain and she has slept a lot of the day. I can´t tell you how wonderful it was to see her sleep! It made me so happy. In the late afternoon her oncologist came by and ordered a sonogram and they are planning to drain both her J-tube and more from her abdomen (not sure if that is today or tomorrow). Then the GI Dr that had helped us out last Thurs/Fri and did her paracentesis came by to see her and is ordering another med to stimulate her system.
He also commented that she looked jaundiced and I had already been in touch with her Endocrinologist about her most recent bloodwork which is showing that her liver is really overworked. While the Endocrinologist says it´s common in patients with TPN (nutrition by vein) like Jenna, I still don´t like it and want to talk that over with her. She´s coming by tomorrow. We both love this Dr. - he´s so gentle & peaceful and we are calmer after speaking with him. :)
Dani took Jordan back and forth to school today; that is working out great!
7 Oct 2014 I picked up the Hemp oil and we tried a tiny drop in the afternoon when she was in pain. We didn´t notice any difference. We tried again at night & no difference either. They said it may take some time to build up and for us to find the right amount for her. But I confess my disappointment.
She was extremely anxious in the afternoon and so sick of having pain and no life. She just wants it ¨to all be over one way or the other¨. Me, too. Who can blame her? It was a hard moment to sit and cry with her and try to calm her. I prayed softly for a long time and when I was done she was asleep. So sweet. It didn´t last very long, though.
We plan to go tomorrow to Budwig and do the IV cocktail that seemed to bring some relief and to try the oil again at night. In the meantime, I keep praying for healing on every level - emotional, spiritual, physical.
I am glad Dani can be working and busy even if it has meant having less help. She has been a different person since starting work. It isn´t without it´s challenges but she seems to be doing a great job & is falling in love with the kids and they with her! She had to make a rule that they can only kiss her at recess - not in the classroom - because they were so distractedly affectionate! haha
We´re definitely all missing Bruce & perhaps especially Jenna most of all...
6 Oct 2014 Today we went to Budwig (although Jenna didn´t want to go anywhere!) and I was determined to have them try something else, something stronger for her main symptoms to increase her quality of life and get her some sleep so that she can heal! We are in the 6th week of no eating, no sleeping, constant nausea & vomiting, intense abdominal pain & distention, etc. They were very attentive and had been very concerned when we didn´t show on Friday (we were in the ER at the hospital doing the paracentesis).
They gave her an IV full of homeopathic stuff but also added some other stronger, more traditional things for pain & nausea. The nurse was SO excited when she was already feeling better after that!
I have had several people ask me ¨What about medicinal marijuana?¨ so I had asked them about that and they have a contact but wanted to try a couple other things first. Since they hadn´t worked, I asked again for the information and they wrote down 2 contacts for me. The cheaper one is kind of far away but surprisingly enough, he showed up this morning at the clinic while I was there! They called me in to meet this rather eccentric German chemist who lives on a farm and prepared the Hemp oil from the seeds. It comes in a concentrated oil and all she will need is a tiny drop rubbed onto her gum in her mouth; she won´t have to swallow anything! Another man was there with him whom I have seen receiving treatment there recently and he was highly praising it. The German chemist, who had enough BO for various men, was passionate about his work and helping people. He told me he has a special burden for kids and young people and that he´ll sell to me at half price. Then he gave me a huge bear hug. :) Gotta love my medicinal pot supplier! haha
PLUS: We got back some of the bloodwork which they do through a lab outside the country which apparently does a much more thorough jog of analyzing tumor markers. Jen´s came back as NEGATIVE FOR ANY AND ALL TUMOR ACTIVITY!! WOW!! ISN´T GOD AWESOME!! (Now if she can just get better!)
5 Oct 2014 Jordan and I went to church while Jen and Dani went to church ¨online¨. Dani was really encouraged when we got home but Jen was still really quiet. I was tired as I had a really weepy morning, feeling discouraged & burdened about all this. Going to church is exhausting since you have to tell everyone about Jenna...I can´t ever just really be myself...but everyone is so supportive and well-intentioned in their questions. I am always especially glad for the worship.
It was a fairly restful day and at 4pm I went to the airport to have coffee with an old friend from Buenos Aires who had been here for a conference for his work. Such a treat to see César as his wife had been one of my first friends there when we arrived and we had our 2 girls one after another. It was bittersweet to talk about life as since then he has lost his firstborn in a tragic accident at 17 and his Mom last year (whom I knew & loved as well). There is definitely a Before and After in your life when tragedy strikes. It was a beautiful time and a lot of his reflections were helpful to me.
Bruce is really busy at his conference and we all miss him!
4 Oct 2014 Had a nice birthday. :) It started off sad as I was missing Bruce and soooo disappointed after the big efforts to help her feel better through the paracentesis and yet it hardly changed a thing. It was very depressing to me to see her still lethargic, in pain, vomiting, not sleeping, etc. I felt like running away from it all...But Dani made me breakfast in bed before she left for a ballet class & that was so thoughtful.
I went out to do a bit of shopping and later at lunchtime, Dani, Jordan and I went out for a nice lunch. I was hoping maybe Jenna could go if we sat outside and she couldn´t smell the food, but she wasn´t up for it. Later her 3 friends came over and with Dani driving they went down by the beach for a bit. Jordan hung out with a friend and we all watched another movie at night.
We are missing Bruce and feeling so helpless with Jenna´s situation. We pray all the time, with her or alone and so, so many others are as well...How long, oh Lord??
3 Oct 2014 We did manage to get Jordan into the house and Dani got home and we all fell into bed exhausted...
Jenna and I spent the whole morning at the ER where the endoscopy Dr did the paracentesis on Jen right there. He was a great guy, very calm. The needle they used was the biggest I had ever seen! Long and thick. They gave her a local anesthetic (painful in itself) and then after looking for the correct spot via the sonogram, put the needle in and began to drain liquid. They sent some off to Pathology so they can evaluate it (10-15 days) and the rest began to drain into a bag. More than 2 liters and 4 hours later, we were on our way home. While she was waiting, we got her port changed (they had to try twice before they got it right) and send blood to the lab since we couldn't get everything done the day before. I also picked up some more supplies for her nutrition. We did all this in 5hrs and got home spent out!
Jenna is relieved of pressure but she is still in pain. I can´t believe they can take 2 liters of stuff out and she only has minimal relief! I can hardly see a difference in her belly...I wish there was so much more we could do for her intestines...Oh how I pray they can begin to function!
Jordan went out with some friends this evening and the girls and I watched a movie. Ted and Claudia came by to say Hi, too. :) They brought some homemade goodies for my birthday tomorrow - so yummy! We skyped with Bruce mid afternoon but he didn´t have much time...Dani had a full day at school and came home exhausted from her week.
2 Oct 2014 Well, my faith was certainly tested today! By 10pm I was quite undone...
I spent such a pleasant morning with Jen, reorganizing some things in her room and talking with her about the complex emotional-spiritual-physical crisis she is living. It was good.
AFter getting Jordan off to futbol and Dani off at her dance class, Jen and I went to the hospital supposedly to see the endocrinologist for bloodwork and to get her port changed. One thing led to another and we ended up visiting the oncologist, going to the lab for bloodwork which got interrupted by a call to go to Endoscopy to get an NG tube placed to drain some of the air and fluid in her gut (which she wanted). The Dr there, however, felt sure she needed to drain her abdomen (paracentesis) and wanted her to check into the hospital, monitor the NG tube and do the procedure (paracentesis - using a long needle, drain fluid from the abdomen) first thing in the morning. It turned into a stressful time as we were both by then exhausted, I couldn´t get a hold of Dani to get back to the house to receive Jordan who was coming home with a friend from futbol and had to get Ted & Claudia to cover that for me plus an urgent trámite (paperwork for SS) for Dani that needed to happen the next morning for her new work. We talked the Dr out of keeping Jenna for the night and left about 10pm promising to come back (thru the ER) first thing in the morning for the procedure.
The Dr said she has enough ¨free floating¨ liquid in her abdomen to warrant emptying it although her oncologist didn´t have the same opinion after her recent sonogram. But I was just wanting to relieve her pain any way possible so we went for it. We told him about the problems with the J-tube (Jenna empties it 3x/day and the bile just flows...He said the body produces 2 liters of bile per day! Wow! Where is all that going??! Her abdomen is so bloated, poor thing...While doing a sonogram, he showed her how inflamed her intestines are (about 3cm wide) next to normal small intestines (about 1cm). Just with inflammation alone, her intestines are 2x their normal size! Inflammation is always painful - no matter where it is on the body, so just imagine your whole abdomen full of that kind of inflammation...
1 Oct 2014 Dani started work today and so she took Jordan to school; a first! I went to my pool class and as I was going there was struck in my heart with peace that this is indeed the time to move forward by faith into a different season...He gave me several scriptures and although there is uncertainty, I feel that something will be happening soon...
I expressed this to Jenna on the way to Budwig. I was really hoping for something different there today...what they´ve been doing hasn´t seemed to make any difference. They are all visibly concerned and really want something to work...Today the Dr tried acupuncture - that was a first! We´ll see if it makes a difference! We also talked with the psychologist there who dropped by the main therapy room and who always asks about her. He really feels there are emotional elements to illness and we agree with him. However, Jenna doesn´t feel comfortable with him and we need to find some kind of outlet for focusing on this part and getting some skills for self care for the future. I felt this was an important and timely conversation. I am focusing some of my prayers in this direction as the Lord leads...
30 Sept 2014 It was a really full day for me (or maybe it´s just that I feel so tired right now). I got some time with our team & that was really great. I did some things with Jen then did the school run midday (carpool). In the afternoon, Jordan skipped practice due to a pulled hamstring which needs rest to heal (very difficult for him!) and we went to do his paperwork for the league stuff. He actually has a FIFA #! That is pretty cool. Fortunately, he doesn't have to do a medical check this year. I dropped him off with some friends and headed home to help Jen. Dear Ted & Claudia sat with Jen while I was out since Dani was teaching her dance classes. Jenna is so miserable so much of the time that it makes the rest of us sad that we can´t do more...
Tomorrow starts Jordan´s full days of school as it will be Oct 1st (8:30-4:30). We have his uniform ready and I´ll start packing his lunch, although some of the Moms are going to graciously halpe me out again this year several days a week. :) They are great!
Super encouraged about the donation site that our dear friends Kati & Suz put up; people are so overwhelmingly generous!
I´m feeling anxious about Dani starting to work tomorrow...she´ll be working at Jordan´s school in the mornings as an English monitor and has dance classes 2x/wk there in addition to her other 2 days of dance classes at a tennis club. It´s great experience for her and the money helps with school. These jobs literally fell in her lap and we received them from God since there is a 50% unemployment rate for the 18-25 year old age group! Both Bruce and I feel it is important for her to have a bigger outlet...yet it is difficult for us emotionally, a sacrifice for Jenna to not have Dani around & available near as much and it means I need to be more available - which I am glad to do. In a way, we are doing this by faith, not know ing how it will all turn out...
29 Sept 2014 Went to Budwig and they did homeopathic IV, massaged her abdomen, asked a lot of questions, did Papimi (electromagnetic) and ozone therapy. She is still no better. At home we still do things to try to unclog her system but we are all just so tired of nothing working. She is exhausted in every way...
Bruce was due to leave on a trip today but his Air France flight was cancelled due to the strike so we get him one more night! Had a lovely prayer time as a family altogether on her bed before we went to sleep.
28 Sept 2014 Fairly quiet day. Bruce, Jordan and I went to church and late afternoon we were able to take Jenna down by the beach to walk & push her in the wheelchair. It was so good to get her out. :)
27 Sept 2014 A bit better today but not much. It´s Saturday so no medical stuff thankfully. Got the wheelchair cleaned up but it´s raining today! Received lovely visitors Murray & Carol, had lunch with them, Carol helped me with some household stuff and then they prayed for Jenna. Carol´s been a wonderful prayerful advocate for Jen in these months and that was a blessing!
Jenna also got a surprise visit at 11am from Cristi, Leila y Sonia; what joy they bring!!!!
Jordan had a game in the rain he wasn´t too thrilled about but at least it had stopped pouring. This is still a friendly match; next week the league games start.
26 Sept 2014 Dani took Jenna to Budwig today where they did IV homeopathic treatment, ozone therapy through her blood and some kind of light therapy. We are still waiting for more visible improvement in Jenna´s symptoms!
After my pool/back class, Bruce and I went to the botanical gardens to talk and pray for a few hours. That did us a lot of good as we hadn´t had much time for that. Having mate surrounded by green and getting caught up was wonderful!
We had a late afternoon visitor and Jordan went out with some friends and Bruce went off to a prayer meeting at our friends´ Abraham and Mayra´s church. Jenna was in extreme pain so Dani and I lit candles and I read various Psalms while Dani massaged her abdomen with oil. She got some relief and we were later able to watch a movie together.
25 Sept 2014 Dani & I took Jen to Budwig where they did the IV therapies and tried another tube to try to let out some of the air. I wouldn´t say they were very successful. Try again tomorrow.
A friend came by to pray for Jenna and Ivan came by with the mellis to say Hi and bring a little cheer they had made (pic in Blessings). Then Jen and I rushed off to the hospital where we borrowed a wheelchair from the ER to go to have her Port pin changed and get her nutrition. Jenna wants to track down an NG tube to try to continue to drain air out of her abdomen but we didn´t make any progress on that. I am amazed at how many people know Jen at the hospital; everywhere we go they know her and greet her!
Dani had a meeting at school regarding her new job starting Oct 1st as well as giving her dance classes. She has fallen in love with teaching and with these girls and they love her! So happy for her and this outlet.
24 Sept 2014 No medical appts today. Dani & I tried to encourage Jen by deep cleaning her room and getting some more stuff out of there to keep it less cluttered. It´s not easy when it´s been my office and some of my old stuff is there plus now her stuff. Anyways, it looks and feels so much better thanks to Dani who stayed at it when I had to attend to some other things. Dani is sleeping in there until she starts her new job next week and has to get up early.
I spent quite a bit of time making a special ¨break-the-fast¨ dinner for Bruce, Alex and Alfredo who are finishing a 10-day fast. I was so touched to watch their love & sacrifice for Jenna and us during this time. They prayed a lot together after or before work and I know they all paid a price. Bruce had a meeting which got extended past the 8pm dinner time and Alfredo didn´t catch the correct time so poor Alex who was on time waited for another hour and a half for his dinner! They all loved it. I could have made liver and lima beans and they would have loved it after that!!!
23 Sept 2014 Had to take Ruthi to the airport this morning...not easy. We will miss her so much. Then we spent 5 hours at Budwig today. Between a Dr´s consult about all of Jenna´s ongoing symptoms and a few therapies, it was a full morning. We are looking at coming 3 days a week for a couple weeks to see if we can get her out of this slump. There are a number of homeopathic remedies that she can get through IV and through small pills that dissolve on your tongue. (Since she can´t swallow anything right now nor get anything into her J-tube.) Her Dr put together an IV for her today and a package treatment to order at the Pharmacy which targets her vomiting & nausea, stimulates intestinal function and lowers the inflammation in her abdomen.
Today they also decided to try getting some of the air out of her intestines by inserting an NG tube down her throat (awful) and drawing out some of the air. This brought quite a bit of relief as a lot of bubbles and liquid came out but she is still distended and there is a ways to go. But hopefully this will put us on a different track.
22 Sept 2014 Finally an encouraging day! What a gift!!
First of all, Jenna got some relief in the am when we tried a different tactic for cleaning her out and she got some air out which was a relief & encouragement. (I can give no further details in an effort to protect the innocent!)
Secondly, after days of cloudy, overcast weather (I know, I know, we´re so spoiled here in So. Spain!), it was a sunny day and it brought us light sensitive people a boost! We were going to go to Budwig but at the last minute had to change plans to go tomorrow. Since the 3 girls were up and ready, we decided to take Ruthi out to Málaga to see the Gibralfaro castle and the amazing view from up there. Jenna was feeling only slightly better but she went and we had such a nice time. I am SOOO happy for Ruthi. :)
Then we picked up her Pet scan results and read them on the way home: they detected NO OTHER TUMORS OR ADDITIONAL CANCER!!!!! Wow!! Thank You, Jesus! Ruthi was so delighted; she had been fasting all weekend until we got the results of this test back. This just made her day (and all of ours; my heart was singing thanks all day!)
21 Sept 2014 It´s so hard to watch your child suffer. I can´t tell you what it´s like to hear Jenna throwing up in the night...my heart is just breaking & I can only pray for mercy...
We have not been able to get any medication into Jenna through her J-tube because when she opens it, it just drains bile! Things are so stopped up inside that even the bile isn´t going down. We can´t seem to get the medicine in - well, the natural enzyme which is the ONLY thing we have that is for relieving inflammation in her abdomen & supposedly absorption of liquid. I feel desperate to get this in her! We will take her in tomorrow to Budwig to see what they can do...
Bruce went downtown to our old church today and was super touched. Jordan and I went to our nearby church and really enjoyed Amy´s presentation for teaching the Jr highers this year...Praying this will be a good year for Jordan in his walk with Christ. In the afternoon, Jordan had a game and unfortunately turned his ankle in his first 5 min in the game. I sat with my good friend Espe who has been such a help & comfort to me this year.
Things seem depressing at the house with Jenna so quiet and miserable. None of us can believe that tomorrow is Ruthi´s last day! O Lord, please give them a good day!
God is really working in Bruce´s heart and he was very weepy as he sat in the kitchen today sharing with Dani & I all that God is saying to him at this point in the fast. We are so touched by 2 other friends that are doing this with him...what love. So thankful for my husband and his tenderness to God & determination to bless his daughter with whatever God has for her. My kids are very blessed to have him for their Dad. :)
20 Sept 2014 Poor Jenna is so tired of feeling so bad. She literally is not sleeping she is so nauseous. No medication we have tried does anything. The Dr. called today about the sonogram and said there´s not enough liquid to try to drain it; there´s more air in her intestines than liquid in her abdomen. She is taking one natural enzyme that´s supposed to help with that but so far, there´s not been a big difference. We need a breakthrough and her body needs to get rid of this trapped air that is so painful!
Bruce took Jenna & Ruthi down to the beach this morning. I was so happy that they got out. It wasn´t that Jenna was feeling better - just that she was desperate to get out - and to her favorite place: the beach. :)
Jordan, Dani & I did a lot of work in our front patio garden today, getting some better, more enriched soil in there. It looks so much better; we´ll see how the plants respond...
Jordan had a birthday party to go to...he has an awesome social life! We have had a prayer time as a family and Bruce is praying with a friend tonight as well. He continues to pray and fast.
19 Sept 2014 Exhausting morning doing a sonogram at the hospital to look more closely at the liquid & air in her abdomen. Jenna was feeling really nauseous and looked miserable. For some reason we had multiple problems trying to get paperwork electronically due to the poor internet at the hospital and I was so frustrated having to go out several blocks away to try to get things sent from my phone that they needed. I finally had to call Bruce at home to send them from my computer and that finally worked. But finally she was in.
After that we went to downtown Málaga for a Pet Scan, the radioactive one that´s for measuring cancer cells. It´s actually called Nuclear Medicine. How scary is that?? Anyways, it´s a long test that probably took an hour and a half or more. Should have results on Monday.
Came home exhausted for a late 3:30 lunch...rested a bit and Jenna received a couple of friends which did her good, Cristi & Sonia. Jordan went out with some friends and Bruce and I watched a movie together on the bed, The Jazz Singer. Can´t remember the last time we watched a movie like that...(with the exception the other night of the 40min Sports Ambassadors video!) Jordan was the last one in at 12:30pm...I was basically asleep on the couch waiting for him.
18 Sept 2014 Quiet day for Jen; same symptoms. I only had to go to the hospital for her nutrition for the next few days, otherwise it was kind of like a day off! Tomorrow we have 2 important things: a sonogram to measure the liquid in her abdomen and a Pet Scan.
Dani did presentations at Jordan´s school today for her dance classes and I´m excited about her opportunity there. Jordan is excited and proud to have her there and that has been super cute. ¨I can´t believe my sister is going to teach at my school and I´ll get to see her!¨ Needless to say, that made Dani´s day!
At night we all huddled on the bed and watched an old short movie that Bruce is in. It´s a Sports Ambassadors film based on a true story of how a basketball team helped reach a village in the Philippines with the gospel. To us it was hilarious! Bruce and I know all the ¨actors¨ and Jordan couldn´t believe his Dad was in a movie! It was made 30 yrs ago. Bruce says it was both the ¨start & finish of his acting career¨! haha
17 Sept 2014 Spent an exhausting 3 hours at the hospital this evening. Got Jenna´s Port changed by the oncology nurse and then waited forever to see the Oncologist. We pushed for clarification about how much of her abdomen distention is liquid and how much is air/gas. We clarified that the air is inside her intestines and that all the liquid is in the abdominal cavity. He said it is extremely complex and that there are many reasons for the current dysfunctions in her system. Perhaps the most typical would be post-surgical and post-heated chemo wash during surgery adhesions which are complicating her GI functions. He really had no solutions to this. As to how much liquid is actually there and if it has increased in the last few months and if it is increased cancer cells related, we have to do another sonogram to determine that. Why we haven´t done that yet is beyond me. He doesn´t want to say that all of this is cancer-related; he is holding out on some of the post surgery complications.
I reminded him that when Jenna had her J-tube surgery the surgeons were very surprised at how good her intestines looked. They literally said, ¨They looked as if they had never seen a surgery.¨ That was amazing! (Why they´re not functioning normally is a whole other story!) Of course, the other thing they said was that they saw some more growths in there which they felt were cancerous. However, they were not biopsied.
Jen will have this sonogram done on Friday morning and some time next week we´ll probably see the Dr again. She also has a PET scan on Fri. Hopefully, with all this information gathering, we should have a clearer picture of where we are at in all of this.
This all pretty much is pointing back to the alternative therapies that can bring her relief and health since the traditional Drs have run out of ideas...
16 Sept 2014 Had an encouraging visit to Budwig/Biomedic Center. We had a long appointment with the head Dr and I had a good talk with our favorite Dr later on in the hall while Jenna was doing a Papimi (electromagnetic impulse) therapy.
The Drs felt that (1) her digestive system is overwhelmed and still not functioning properly. That´s not new news but perhaps Jenna´s going back to eating whatever she wanted in August (although healthy) was still too much on a system just ¨waking up¨. It has definitely been protesting and her swollen intestines are proof of that. (2) the liquid in her abdomen is not accompanied by any rising tumor levels in her bloodwork or evidence in her scans & her liver is functioning great - all really good news. So it still could be related to the GI system´s slowness instead of growing cancer levels. She gave us a prescription for an enzyme that helps absorb the liquid & lessen swelling so we´ll see first what impact that has. They don´t want to attempt drainage yet until they see if the enzyme works. (3) they did some more neuropathy both on her abdomen & on her 6th and 7th vertebrae which should stimulate proper intestinal function as well.
One of the Drs told me of Hering’s Law of Cure, which says once you’ve started a remedy, you will briefly revisit your symptoms in the reverse order in which they appeared. This could be the reason why Jenna has had this down time so soon after finishing all the therapies that are so pro for her immune system...and it could mean that things will only get better!
Tomorrow we will meet with the Oncologist to have a candid talk with him about what he thinks this all means and how to proceed. Now that Jenna´s system is at least regular, we need to know why is all the air in there still going up and making her throw up? Why won´t it go down? When will the intestines become less inflamed? Why does she still have pain and how to control it better? What does he think should be done about the liquid there? Why does she have no energy? It seems like we get better answers when we go to Budwig...and we come out feeling more encouraged - there´s always something they can do for her!
By next Monday or Tuesday, we should have the results of the Pet Scan and that will be good information, too.
15 Sept 2014 Physically, it was basically the same kind of day for Jenna with the same ongoing symptoms. So grateful for Ruthi who has been a constant source of companionship & so helpful to me around the house.
Today was a BIG day for Dani as she was trying to determine how/where to do some dance classes for some girls who have been asking her. She had to negotiate various things with a tennis club who is going to let her use a room there and help get more students by lending her a glass-walled room where others can see them! Because they were wanting a high percentage, we checked in with Jordan´s school to see about their facilities and in the end, it looks like she´ll be giving classes there, too, plus working as an English assistant. Basically this means that God provided 3 jobs for her in an economy of 50% unemployment for her age group and just a week after she made a decision to stay on here in Spain for another quarter or so! Amazing! She is flying. ;)
Jordan had a good 1st day of school with the highlight being - shocker! - playing fútbol at recess with all his friends. Even though he´s not excited about studying, he is glad to be around his friends again and I was happy to see so many Moms and staff again. Everyone who hadn´t seen us lately wanted the scoop on Jenna and I can´t wait for the day when I have really good news...Had coffee with several other Moms from Jordan´s class and it was great to catch up.
Felt victorious about getting copies of Jenna´s most recent scans & x-rays in an hour after being told by phone it would take 7 days! Haha. I got in the car and went down there and with people who know my face and Jenna´s situation, walked out of there with a huge smile - and a CD we need for tomorrow´s appointment at Budwig Clinic. Knowing people goes a long way. :)
Feeling encouraged after some visitors who came by to pray - Abraham & Mayra and later on, Alfredo. then Amy brought by a dinner! Wow! Feeling like a queen...
14 Sept 2014 Thankful for a quiet day for Jen. Bruce had some last minute coffees, did some airport runs and got to church and I took Jordan to a fútbol game (fortunately, Sunday games are infrequent) and we all met back for lunch. The afternoon was definitely siesta and then some mate by the pool (where Jordan and Dad traditionally ¨have it out¨ in the water; it´s very entertaining!).
Jenna wasn´t feeling any better but at least the calm environment did us all good. We sat around talking part of the evening and Jordan and I got last minute things ready for his first day of school. With everything else going on, Jordan has definitely received the ¨short end of the stick¨ lately, but I´m glad we can get back into some routine and I love having ¨windshield time¨ with him in the car.
I had a good skype with Cathy, my dear nurse friend, who is currently on a trip in the US. I will miss having her nearby for a while since she and her husband David have been hired as consultants in Uganda to help develop cancer care and insurance on a nationwide level there. So happy for their 6-week opportunity...
I can always count on Cathy to be careful but forthright, educational and caring and after listening to all that was going on, she feels we are right to put everything out on the table with the Drs this week. It´s important to determine if we are transitioning into a different phase and to change care strategies accordingly. She also commented how important it is to find ways to keep Jenna comfortable as far as pain and to determine what is in the liquid in her abdomen. This week we´re set up to meet with the Budwig Center Dr., the Oncologist and have a Pet scan (which is the best scan available for cancer).
God is in control. Always.
13 Sept 2014 Bit of a scare this morning...Jenna's J/tube had come out quite a bit, it was oozing quite a bit and hurt. We went to the ER (because what would this week be like if we didn't go to the hospital every day?!) and the nurse started to clean it and the whole thing came out in her hand! We thought for sure she would have to be admitted and have a little surgery to put another one in but in the end a surgeon came, inserted a new one and stitched it it with NO anesthesia. Poor Jen, she was crying when we were let back to see her but everything was done quickly.
I talked to Jen's oncologist by phone whom we will see on Wed...we have a lot of questions for him about what all of this is leading up to. No more being indirect; we are going to ask him point blank. Can you biopsy some of the fluid in her abdomen and tell us if there are cancer cells? Can you drain her abdomen and relieve the pressure? Is this a sign of "the end"? What symptoms should we expect to see? How will they be managed?
I keep wondering why after such an intensive investment in the alternative therapies her body seems so much worse just a couple weeks after completing it...what does all this mean??
We have a team from our region meeting at our house these days and it's been stressful for me to not be able to be with them because they're so awesome and difficult for Bruce to be in the middle of it all. They were all super sensitive about our situation but it was still a tough week for us. I'm glad they had a profitable time but will also be glad to regroup tomorrow as a family.
It was a relief to get Dani back home after her 2-day camping trip. All the other 5 girls came in to say Hi to Jenna. After the intensity of these days, having her presence here is a real comfort.
12 Sept 2014 We didn´t get to see the GI surgeon we expected; we saw one we don´t know too
well and he was NOT too helpful! The good news is that there is NO obstruction in her intestines; the x-ray showed 8 hours later that everything had passed. The bad news is that they can do nothing elese for her. As a surgeon, he only knows how to operate and he said since there was no obstruction, she was not a candidate for surgery. We were certainly not even looking for surgery! The oncologist sent us there for another opinion and further insight (or so we thought). The GI Dr. said there IS NOTHING ELSE THEY CAN DO FOR HER. That was a hit. Back to square one.
I kind of had to drag it out of him (Spaniards can be fairly direct but in the medical world we have found them to be quite indirect), but he believes this is the continued process of the cancer and that small tumors within her abdomen are causing the liquid & air build-up and that we can only treat symptoms. In spite of the fact that scans and bloodwork show NO tumors, they believe this is the explanation for her symptoms. Is this the beginning of the end?? This is the most sobering question of my life...
I made an appointment at the Budwig Center for next Tues to get their opinion and input and an appointment next Fri for a Pet Scan (the scan specifically for cancer). We´ll see what they say...
Tonight Jenna and I cried & prayed together and it was quite sacred...may we all fully cooperate & believe in His good and perfect will for us...
11 Sept 2014 Went to the hospital 2x today to do a contrast & 2 x-rays to see how is travels through her intestines. One x-ray is done right after ingesting a liquid (she had to put it through her J-tube because she just threw it up) and one is done 8 hours later. She also had her Port changed and we picked up her nutrition and supplies for the TPN. Tomorrow morning we´ll see the GI surgeon who will evaluate the x-rays and hopefully give us some solutions to this ongoing situation.
10 Sept 2014 Went to see the Oncologist again who reviewed both her abdominal x-rays where there are pockets of air & liquid (mostly air). He can´t exactly determine why there are air pockets & a distended abdomen so he called the GI Head Surgeon. We will see him on Fri am. The Oncologist also arranged for a test tomorrow (we will check in through Emergency) to see if there is somehow a partial occlusion of some type. The x-rays show there is no occlusion. We pray there can be some answer & correction of whatever is wrong!
9 Sept 2014 The same. Still throwing up, still distended, painful abdomen. It seems there is noise & movement within the intestines and they are getting slowly more cleaned out, but something is not right.
We have a group coming to meet here in Málaga (basically at our house) and we have had team meetings Mon & Tues so I haven´t had time to tell you all much about the weekend...
8 Sept 2014 Had a great weekend away and will share more tomorrow. Jenna is not really much better and we are sad that it is taking so long to get out of this down time. I guess we all thought it would last a week or so but its going on 2. We need wisdom and a breakthrough!
5 Sept 2014 We're taking off for a couple of days in the country. Some friends, Salvador y Loli are called last week and asked if we would like to have a getaway, so YES! We are going. There are some thermal waters with curative properties and we're gonna let Jenna soak there. :) We probably won't have much internet, so I'm signing out til Monday.
Please pray Jenna will feel well enough to enjoy these surroundings & that we will all experience rest & spiritual renewal.
4 Sept 2014 Jen is a little better and the Dr's ideas are working. But she is still throwing up a bit and we are still not out of the woods. She is sleeping & resting a lot.
Bruce and Jordan left for a house in the country that we'll use this weekend to check it out. They'll come back for us tomorrow.
3 Sept 2014 Back to the hospital this afternoon to meet with the Oncologist and evaluate the scan. Dr. Ortega is our favorite but we don´t get to meet with him as often as another one who has more availability. His encouraging, positive temperament and thoroughness always does us good.
The scan DID NOT show any tumors; thank God! It DID show a lot of liquid and air in her abdomen and that is why it is distended and painful. She has had liquid in her abdomen for a while; what we don´t know yet is if it has increased. There can also be a lot of reasons for it. So this is still to be evaluated. She did yet another abdominal x-ray before we left the hospital (last ones to leave Radiology again at almost 9pm!).
The Dr. was SUPER helpful with her backed up, dehydrated GI system, giving us some new things to try which the Endocrinologist had never mentioned. She already got some relief before going to bed. (No more information on that one!)
We came home relieved and are hopeful that this lousy week can soon be put behind us and we can move forward. She is still tired and dehydrated (in spite of constant nutrition and IV fluids) so I hope she can soon begin to drink and eat again. The vomiting has lessened and as her system cleans out it should go completely away. We pray towards this...
2 Sept 2014 Jenna was more peaceful after Randy & Dora were here and slept a lot better last night. Thankful for that. The pain in her abdomen & back has gone down but the other symptoms are still there.
In the afternoon, at the hospital we were able to see the endocrinologist who said the positive thing is that Jenna´s intestines have a lot of moving & noise going on and she hasn´t had that before. So I´m glad about that! But there is a hard spot that has Jenna - and the Dr - worried. It could be any number of things but it needs to be ruled out by a scan. Apparently the sonogram & x-ray of Sunday don´t show much.
We saw the Oncologist on duty who examined her abdomen as well and ordered an Urgent Scan for the same day. We are to go back tomorrow to meet with the head oncologist and have it evaluated.
She had her Port line changed by the oncology nurse in the chemo area and then we went down to Radiology for the scan. We were the last people walking out of there at 9pm. I was so glad to have done 4 things in 3 hours at the hospital; practically a record!
1 Sept 2014 Where in the world has this summer gone??? I feel like we haven´t even had a summer...I have not had that hazy, lazy summer feeling or time to relax or time to sing ¨summer breeze, makes me feel fine, blowin´ through the jasmine in my mind...¨ I´ve been to the pool a few times but only a couple times with the family to the beach. It has just been so full of health stuff and visitors, the patio project and for me, it has flown by...wow.
Today some dear friends are coming by to pray for Jenna in a bit, Randy & Doralicia. Dora has met a couple of times with Jen to pray & for spiritual direction. She is awesome. We need a breakthrough!
31 August 2014 Sunday am Jenna wanted to go to the ER so Dani, Ruthi and I took her while Bruce went to church and Jordan took a 3 hr nap after his all nighter. It was one of our faster experiences at the ER and the Dr. did both a sonogram and an x-ray. The sonogram showed a lot of liquid which could indicate tumoral growth (but he hadn´t seen what it was like before either; she has had some liquid there for quite a while) so that sounded a bit scary. But the x-ray showed there was no major obstruction (which was Jenna´s fear). He sent us home armed with pain meds for the abdominal and back pain, enemas and anti-nausea stuff. It´s just always the same old thing. I guess it just takes a while for it to pass. With so much activity & distraction, Jenna was not as attentive to her health as she would normally be and now we are all paying the price - most of all, her. We are supposed to see her oncologist today since the ER Dr called him while we were there yesterday to let him know what was going on.
29-30 August 2014 Bruce has been on retreat for a couple days trying to bring his sabbatical to a close. Poor guy. It has been a most challenging time to try to have a sabbatical and get ready for a new job...I honestly don´t know how we´re going to step into the fall...
Jenna is miserable. She is throwing up, her abdomen is distended, she hasn´t eaten for days and we are just trying to keep her hydrated by IV. I had (almost) forgotten how sad & depressing it is to have her so ill...Ruthi & Dani have been wonderful and so she has been well accompanied, even sleeping in my bed at night the nights Bruce was gone!
Jordan meanwhile, has had 2 sleepovers in a row, one with 3 other TCK´s (so I know he got some sleep) but Sat night was a birthday party for one of his school buddies, all Spaniards and he slept nothing! He is very culturally both Spanish and teenager and truly feels that the best fun & conversations are to be had at night!
28 August 2014 Jenna woke up not feeling well and stayed in bed. It seemed logical that there would be a letdown after so much activity & stimulus for 10 days. Dani & I were busy cleaning the house and by lunchtime it was clear that she was more than tired. She had a lot of pain in her abdomen and it was radiating to her back like never before. We weren´t sure if this was a ¨good¨ thing in the sense of nerves in the area waking up or not, but it has not been any fun for her.
There was another surprise today late afternoon and that was that her dearest friend from university, who is Argentine, Ruthi, arrived today from Argentina for a month. I think in her state (Jenna), Ruthi is the only person in the world she would have wanted to see! Ruthi has just sat quietly by her side and is happy to just be here.
When I was at the hospital to pick up Jen´s nutrition for the next few days, I was able to talk to her endocrinologist who gave me the usual meds for her slow, stopped up system and vomiting (since we´ve regressed to that again). She is not super helpful but she is concerned. If there is no progress, we are to bring her to the ER.
21-27 August 2014 Life was crazy and full. Jenna felt great, albeit it tired since she really pushed herself going out to the beach and other places in Málaga with her dear friends and staying up way too late! On the 27th the last four left throughout the day and by evening it was just the 5 of us again.
Bruce and I got away for a couple days with our dear friends Alex & Amy to the country right after the bday party. The 7 girls had the house to themselves and Jordan went to stay with a friend. Bruce and I had time alone, time as a couple and time with Alex & Amy. It was good to be away from the busyness at our home but the quiet stirred up a lot of things for us that were necessary but bittersweet. Quiet has a way of doing that...We are both so tired right now.
20 August 2014 So the house it literally full of young beautiful, interesting young women. Tomorrow Bruce & Jordan are leaving on a 2-day backpacking trip! haha Good call, guys! There´s a lot of jetlag around here but we ate lunch together and then a bunch of them went to a nearby outdoor shopping place then over to the beach. Jenna & Justine are here and are starting the Lebanese dinner we´re going to have tonight. Mmmmm.
It´s challenging for Jenna to spend time with everyone and with so much distraction, it´s easy to forget to make health your priority....in other words, things slip through the cracks. But she´s taking her supplements and auto-immune therapy things and on TPN a lot of hours per day. I know she´s not getting the rest she needs but she IS happy and that means a lot. :) Happiness = endorphins = strengthened immune system!
Today is Bruce & my anniversary and we had a plan for tonight which fell through. We're going to do it next Wed instead and things should be a little quieter by then anyways.
19 August 2014 JENNA´S BIRTHDAY! And wow, what a day it was! Suffice to say here, she was greeted in the morning by her 3 besties from Málaga for breakfast and a song (see video), delivered roses, given a DVD with a compilation of well-wishes from friends all over, received 2 more friends, Carolina at 12:30 and Hannah at 4:30 and then after a trip to Malaga to see the view from the castle and take some pics, she came back to Saray´s Argentine lasagne, salad, bread & drinks, fresh fruit & amazing cupcakes & a sugarless, choco-banana soufflé made by Justine. We ate out on our patio with candles & it´s looking better little by little. The combination of friends and their unique backgrounds is so much fun...and Jenna is feeling very loved.
18 August 2014 We pulled off a huge surprise today; Justine arrived for 10 days, one of Jen´s best friends from university and Jen had no idea. Dani & I picked her up at the airport mid-morning and then had her bring Jenna her tea in bed. It was so cool! Jenna was completely shocked & happy & touched. I´m glad THAT´S over! Keeping secrets is hard on your nerves; I hope surprises are good for immune systems!
16-18 August 2014 We have been so busy in this recent period of time that I have barely written. Those of you who are also on facebook may have received some additional info but not to worry; it has been a busy and intense time both with our vacation days and these following days with friends of Jenna´s who have been arriving from various places since the 12th.
Jenna continues to be stable and has restarted up the TPN. She is still eating small meals and all seems to be going well with that. Her weight is up a bit. We saw one the oncologists on Mon and it was kind of a downer since (as is to be expected) he wants her to consider doing some chemo now that she can handle some food that wouldn´t compete with her Port. We have been thrilled to be going a different, positive direction with holistic, alternative therapies and Jenna has felt so good, why would we want to turn that direction now? While the oncologists feel it would slow down and lessen symptoms and prolong her life, they also admit they don´t know what her response will be or what side effects she will have (their are particular lists of side effects for each drug but it always seems to be a wild card as to which one you will get...
I had never realized that we all apparently have some cancer cells in our bodies but that a healthy immune system fights them off. While that is kind of scary, it also makes you realize how important it is to build up your immune system if it is compromised and give the body a chance to heal itself. We have been working hard on this in the last weeks...to receive chemo and kill the good guys along with the bad guys is not settling well with us. We know there are many different takes & opinions on this. Jenna felt a certain pressure from the Dr. to consider it. Even if you feel strongly some other way, when a professional gives you a good defense with his reasons, it is sobering. It wasn´t a very easy appointment to have to communicate we are going in a different direction. He still wants us to ¨think about it¨. But Jen is still convinced of the road she is on now and we are, too. (This was our first appointment with Oncology since we had started at Budwig.)
We still have to go to the hospital a couple times a week to pick up nutrition, do blood work, check in with the Endocrinologist, get check-up scans, etc. But it´s not the kind of medical schedule we had before, going to the hospital or the clinic all the time. That part is a relief. Short of emergencies that can come up, we´re down to 2x/wk right now. :)
We had fun on our outings for our vacation last week, spending 3 of them out all day: a beach, a lake with our team families and a mountain- river place. It´s not near the same as really getting away, but we had a lot of great talks and fun and got some sun, too. The last night we went out to a nice dinner and in spite of some issues we are working through as a family (why don´t these things respect our vacation week?!), we had a great dinner & a beautiful time.
That last day of vacation we all spent time cleaning & readying the house for the guests who began to arrive the very next day...
16 August 2014 Saray arrived from Argentina this morning and oh! what fun it is to have her here! We have been friends with her family since probably ´96 and for me it´s like a little piece of her Mom here with me!
In the afternoon, Betty arrived from Mexico and it is also such a treat because we are good friends with her parents, too. Betty reminds me a lot of her Mom and it´ special to have her here, too. The 3rd of this foursome (Jenna being the 4th) arrives on Tues. These are the 3 TCK´s that Jen has come to know and love in that special unexplainable way...and even though they have never lived close by one another, they have managed to develop deep bonds at conferences we have been to as families. It is such a gift that this is able to be happening. (Financially it is a miracle! THANK YOU to 2 of our churches who helped get the girls here and also to their Dad´s for donating mileage!)
11-15 August 2014 This is a week of vacation for us, a stay-cation really, so I will not be writing much unless something really important comes up. Jenna continues to do well, has continued to eat & drink and has only had a few bouts with vomiting. She will start her TPN back up this week, so that will be big - 2200 calories per day. But THANK GOD, she has felt so good during this time without TPN that I almost feel reluctant to have her go back on it! But she has lost 2 kilos (not very much considering!) and we want to keep things moving uphill.
10 August 2014 While Bruce, Jordan and I were at church, Jenna had the unfortunate experience of having ¨dumping syndrome¨ after ingesting (perhaps too fast) her morning supplements (liquid form). That led to more than an hour of vomiting, racing heart, sweating & hot flashes. Good thing Dani was with her.
The rest of the day was without incident although it seems to have left her a bit hesitant about eating and her morning supplements in general. There may be one new one she has added, glutamine, that she needs to start more slowly and build up towards. We are all learning & relearning...
Jenna stayed at home while the rest of us hit the pool for a while and that was good for us and refreshing. Tomorrow we start our mini vacation from home!
9 August 2014 Not much happened medically for Jen today but at 8am our dirt for the patio was supposed to be delivered. That is NOT good news for a 13-yr-old in Spain in the summer on a Saturday morning, but oh well. One of our teammates, Ivan, brought his 14-yr-old, too, and when the delivery was late and I returned from picking up some tools for a friend, they were sitting around looking lifeless. Sometimes this ¨making of men¨ is hard on us mothers. ;)
When the dirt arrived, there was lots of work to be had for all and everyone was busy for several hours!
8 August 2014 Dani took Jenna to the hospital for her Minor Surgery to get her new Port put in. Am I getting inoculated to these things that I feel free to send my 2nd daughter to accompany my other daughter to a surgery?! It´s getting to be such a not-a-big-deal that I feel fine about it. :) In the meanwhile, Jordan and I were working on the patio, scrubbing bricks and chairs and patio floors. Bruce was downtown working on his Spanish citizenship process.
My back has really been sore lately, especially after all this physical work on the patio (which I truly enjoy), so Jenna and I both took a power nap. Jenna says, ¨There´s nothing like anesthesia for a good nap!¨ haha
Bruce and Jen went off to get some more plants and met up with Tomás (our friend and plant consultant!) and his family, dear friends, Raquel and their girls. Karen y Kelli decorated Jenna´s hair with flowers they found around the nursery and she came back looking like a princess. :)
In the evening Jordan had a game and I went alone to see the 2nd half (it was a friendship match) while Bruce was painting the railings and window guards at home. Jordan spent the day with a friend and went off to his game with another teammate so by the time he got home, he was pretty spent. We all fell into bed.
7 August 2014 Bruce & Dani took Jen to her last morning at Budwig and she did lots of the usual plus some foot reflexology and her 2nd (ouch!) session of neuropathy. That is where injections are made all along her scars to unblock the cells´ communication in the abdomen. Especially across the mid abdominal line scar tissue can wreak havoc because of its disrupted normal function & communication.
The girls met some friends downtown and had lunch at a new organic restaurant and had a great time, coming home around 5pm. Jordan and I worked out on the Patio Project, continuing to clean the brick wall of cement residue and the patio floor as well. We also started cleaning our old white outdoor chairs and it took plenty of bleach, comet and elbow grease!
Jordan is incredibly sore today, mostly from preseason training and it´s definitely limiting his enthusiasm for the Patio project! Tomorrow he´ll go spend the day with a friend and finish up with a game in the evening. :)
Jenna´s new Port minor surgery has been scheduled for tomorrow morning. The area looks great; it has healed up very well. Hopefully, it will go as smoothly as last week when we were back within 3 hours!
We are finishing up this day with Bruce painting out front - railings & window guards and Dani is giving a hand at varnishing the brick wall. :) Tomorrow supposedly our dirt will arrive and that will be the last thing we´ll do this week on this Project! It´s time to give it a break! Then Phase 3 will begin and we´ll plant stuff, get a table & some lights and work on our mosaic! Pics to come!
6 August 2014 Dani took Jen again as Bruce had a meeting, Manuel was done with his part and Jordan and I were on for working on the patio today. Unfortunately, no one took MY picture working!
Jenna did various therapies today and started the immunotherapy which is a shot of some supposedly amazing stuff. She´ll take this whole round (a month) and they´ll do some very specific blood work before and after to see the difference in her immune system. We hope there will be a great change!
Jordan and I worked hard digging out a few inches of dirt and hauling it off to get rid of all the cement and junk that was in it and get it ready to receive the new (good) dirt later this week. Plus we wiped all the dust off the walls and attempted to clean the cement off of all the bricks without a lot of good results. That was frustrating but hopefully after they´re varnished we´ll enjoy our rustic look! Dani cleaned the patio floor (it´s an every day ordeal) with vinegar trying to get all the white cement residue off. It´s gonna take a few more goings over...
Bruce & Jordan are doing some painting this afternoon while it´s cooler although Jordan has to go to futbol practice. He is so sore from Monday he´s not sure how he´s going to run tonight! Here is Jenna´s contribution to Phase 2 of the Patio Project: spray painting our house numbers! haha The Next Phase will involve her more: a mosaic in tile on the wall. :)
5 August 2014 Daniela went with Jenna to Budwig and they did her various therapies. She only has 2 more days left! Manuel & Jordan were working together this morning while Bruce consulted with our friend Tomás on plants, landscaping and dirt. Tomás is a huge blessing giving us his knowledge and advice plus he took Bruce to places he knows & got Bruce a good price! :)
I was busy inside and out, cooking, cleaning, attending to things the guys needed, etc. After a late lunch they continued working and I was on clean-up. Dani left with 2 high school friends for lunch and horseback riding! She was so thrilled when her good friend Nuria called to invite her to go (for free!) as she had been praying for an opportunity to go. She has ANOTHER opportunity, too, with another high school friend, Marion, and she is so blessed!! It´s one of her favorite things.
Arnaud returned to visit Jenna in the afternoon and they had a nice time talking. Plus, he gave Jordan a ride which he LOVED! Hopefully, Jordan can go to France some summer with the 6 Dubi boys and Arnaud will be close by. :)
Bruce, Jen and I sat out on the porch for a while at dusk having a drink and talking about the day. One of the things that´s all of a sudden happening is that 3 tck friends of Jenna will be coming for a visit! This is a dream come true for them! More on that later...
Jenna´s special immunotherapy came via special mail today in a cold thermos from Switzerland. They´ll start her on that tomorrow at Budwig and then we´ll continue it at home. She is due to have her new Port put in this week but they haven´t called with the time and date yet. In the meanwhile, she is eating what she can and putting in a little nutrition at night via the J-tube.
4 August 2014 At Budwig in the morning with Jen. I´m putting some pics under Blessings to show a few more therapies I didn´t have pics of before or that she did for the first time. She is a bit weak after the fever and not eating much this weekend. Plus it is hot here and everyone is feeling less energetic. (except Bruce who is the Energizer Bunny). But we got her another nutrition to try with her J-tube and we´re trying that out tonight at a slow velocity.
The patio project is taking a lot of time and has become more involved than expected! (like most projects, right?!) Bruce, Manuel and Jordan (part-time) are out there under the hot sun and then I clean up late afternoon-early evening. Yesterday I was just starting to hose things down when Jenna´s friend from France arrived on his motorcycle. We were expecting him to pass through although we didn´t know when exactly. He is a friend from the church in Normandy where she was a nanny for a year and he is close friends with the Dubi family whom she nannied for. Well, he showed up with 2 other bikers from Switzerland and we had quite a time of it!! They are all Christians and ride for Jesus and to represent him to other bikers. When I saw their shirts I said we have a good friend here who has a biker ministry here in Spain. When they asked his name and I told them they said, ¨That´s who we´re going to spend the night with tonight! Then Wed we leave for an international rally in Portugal!! haha It´s a small world. We called Juan and he came over to meet them and we had a great time talking in French, English and Spanish. :) When they left, some neighbors came out to take pictures of them!
Later, we received some dear people (from New Zealand) who used to live here and ran Villa Isabel, YWAM´s training & hospitality center nearby. We hadn´t seen them for 11 yrs. It was an honor to enjoy some time with them and have encouraging conversation until dark at 10pm.
Jordan started pre-season training today from 7:45-9:30 and needless to say, we were all wiped at the end of such a day!
3 August 2014 Restful day for Jen with no fever. She's eating again although not much. At home with family...Bruce, Jordan and I went to church, Jordan went home with friends to spend the afternoon and we were with the girls. Restful! Bruce went out to see some friends on his own around 8:30pm. I stayed back knowing we have a big week ahead of us...Praying for more progress for Jen as we head into the last intensive week at Budwig.
Dani has had lunch with a friend and is going out with another friend to do some salsa dancing tonight. She is happy! :)
2 August 2014 Jen had a rough night and seemed to have had more fever. She was rather weak & dizzy through mid afternoon but then she started eating some and still doesn´t have a fever at this writing (8:30pm). I was a bit concerned because of the infection in her Port but she´s had that for more than a week with no fever and has been on antibiotics for at least 10 days already. Hopefully tonight will be better. She hasn´t moved much today...
Bruce & Dani took several hours to get away at our favorite botanical garden and that was a great time for their relationship. They got to have a nice lunch outdoors there, too. :) I let Jordan sleep in to his heart´s content and he´s been so cheerful today. :)
We had some time at the pool late afternoon which we all enjoy (except Jen who stayed home). I was glad to have a day without the patio project going out front and got the dust cleared out for the weekend. :)
1 August 2014 Is it really August already?! Dani took Jenna to Budwig Center this morning while I held down the fort here in the midst of the patio project. For those who have done reconstruction and/or remodeling in their home, you can appreciate the dust & work of this. :) The house, laundry, meals, medical finances and the blog kept me plenty busy!
Jenna came home with a fever and it looks like it was from doing the full body sweat capsule on such a hot day. She laid low most of the day. I talked to the Dr. there and already after a nap and some paracetamol, her fever has gone down. Obviously, it hasn´t been a good day for eating but she´s trying to keep the liquids down. We´ll see what tomorrow brings...
Jordan got to go out to lunch and to the movies with a friend after putting in a couple hours´ work around here. We´re all tired tonight...
31 July 2014 Yesterday Jen got her old Port removed but the Dr said she would have to wait a week or so to let the area heal before getting the new one put in. Sometimes the communication around here is not the greatest. ;( This means another week without nutrition! BUT here´s the good news...
She is eating by mouth so much better! It´s amazing but she has no more problems with esophageal spasms, vomiting or other pains influencing her ability to eat. She is still cautious about what she eats, can only eat small amounts at a time and listens to her body about what it wants (fruits & veggies mainly) instead of focusing on hyper caloric foods to gain weight. (It´s getting really hot here now and so NO one wants to eat much anyways.) She is also drinking a lot more AND is able to drink and eat at the same meal! THIS IS ALL AMAZING PROGRESS. We are praising God for this healing!
The pain around her J-tube has diminished markedly. At the Budwig Clinic they have done some things for pain in the last few mornings and that seems to have helped. Then again, I like to believe that the many specific prayers for this are really paying off! She feels much less pain for no apparent reason.
Around 6pm we went to the hospital to see the endocrinologist and she couldn´t believe all that we told her. We hadn´t seen her for a while and she didn´t even know the whole story about the Port issues. She´s up to speed now. But what she MOST liked was Jenna´s most recent blood work that showed great improvement from the last one. She has no anemia and most levels of everything else are in normal ranges!! Of course, this bloodwork was from when she was on the TPN and doesn´t reflect the last week without it. But amazingly, she has only lost 1 kilo in all this! Besides, she feels great and has more energy. Do we even need to go back to TPN??
Jenna has been using her J-tube at night to slowly pass some nutrition through and see how her system responds. So far, so good. The Endocrinologist was very surprised by that, too, and gave us another nutrition more specific for the J-tube that we can use.
After starting off the day rather sad because we had to say good-bye to Becca & Katelyn, it ended up completely victorious and Jenna came out of the hospital glowing, so happy with the great support and thrilled to have surprised the Endocrinologist with the good progress!
On the home front, Bruce & Manuel continued working out front, dealt with a plumbing crisis when a tube was struck accidentally and no one could figure out how to turn off the water until our neighbor suggested it was perhaps downstairs in the parking garage of the community - go figure! That worked but poor Manuel who was alone when this happened and had a big scare. Dani & Jordan were able to help by calling a local plumber and getting Manuel into the garage, etc. As with all works of this kind, there is dust & dirt everywhere and I spent a couple hours cleaning to restore our sanity!
Thankful for Dani who, while Jen and I were at Budwig for the morning, stayed home to do some cleaning and make all of us lunch. Jordan helped Dad & Manuel for a good while outside.
30 July 2014 Today Jenna gets a new Port at 3:30pm. This is a minor surgery. She took the morning off from Budwig since we´ll be at the hospital all afternoon and it´s B & K´s last day here. They took off to the beach for a while this morning and will have lunch down there in a typical beachside restaurant.
On the home front, Bruce started Phase 2 of the front patio project with our friend Manuel. We have to fix up the unsightly walls and then we´ll build up a planter around the edge where the old pine hedge was contained. There is NEVER a dull moment around here!!
29 July 2014 To Budwig again for the morning and Dani took the girls out for an Andalsian breakfast: toasted bread with drizzled olive oil, freshly grated tomato and some smoke-cured ham. :) In spite of all Jenna´s needed to do while they´re her, we´re all glad Becca & Katelyn have been able to do & see as much as they have.
We had another guest, Alan, arrive from Madrid on the train for a quick 24-hr visit. He is Asst. Pastor at the church where Bruce grew up and his family has been visiting other workers in the Madrid area. We´re glad he was able to get away for a day to be with us!
Bruce took him to see the castle downtown and then we did a big asado for lunch. Jordan´s friend was here, too, so we were a full 9 around the table today. We all enjoyed the meat and salads. Didn´t finish lunch til 5pm! An hour later, Bruce took everyone Alan and all the girls except Jen and I to a little Andalusian pueblo, Mijas. It´s a really quaint place to see and close by. They all enjoyed it and Jen and I had a nice & unexpected time alone to talk. Then we both got time to do some organizing (her in her room and me on finances).
Jordan went to the beach in the afternoon with Ale´s family and came home later. We ate a light dinner after everyone regrouped and then had a hilarious hour of Pictionary before going to bed.
28 July 2014 Killer medical day...but everyone helped. Dani is now done with her dance intensive so she drove Jen, Becca & Katelyn to Budwig and that took around 4 hrs. Becca & Katelyn did some sightseeing with 3 of Jenna´s friends who wanted to practice their English and they had a great time.
I got to stay home and get done some much needed errands & cleaning. It´s great having others to help with this big commitment to Budwig right now. I can´t tell you what a stress reliever that is.
Jenna did some of the regular therapies she´s been doing and today they added oxygen therapy where they filter oxygen right into her bloodstream. Cancer doesn´t like oxygen-filled environments, so Bye-Bye!!
I took Jen to the hospital for an oncology appointment and supposedly to get her new Port. In reality it was just to set it up. But the Dr looked again at the Port which is looking better. Since her J-tube is really the worst pain, she called in a GI surgeon to look at that and he took some time to examine her. poor thing cried from the intense pain of his pressing the area. He said something is wrong because of the pain she has but there´s no sign of infection, everything feels ok and the x-ray showed that it´s in it´s proper place. He sent us to do a sonogram but didn´t feel hopeful that it would show anything new. Fortunately, we were able to do it right then and do some bloodwork for the upcoming Port minor surgery. Four hours later, exhausted, we got home.
I got to chill out & the girls did, too. Bruce went to a futbol game with a friend and got home at midnight. Jordan was with a friend who lives a few blocks away and ended up spending the night over there with Ale.
27 July 2014 All 7 of us went to our former church for 12 yrs downtown and were overwhelmed by their love. They have been amazing in their prayers & concern all these months and were SO happy to see us all...especially Jenna today.
Had lunch and a sisesta and hit the pool this afternoon. Jordan has a friend over who will spend the night. The girls went out down by the beach to meet up with friends and if it weren´t for Jenna´s pain in the J-tube area and shooting liquids into it, things would have almost seemed normal...she is walking slowly and slightly hunched over with the pain in her site which we will investigate further tomorrow.
We´ll be at Budwig in the morning and at the hospital in the afternoon to get a new Port and have an appointment with an oncologist. Hopefully we can also see a GI surgeon to investigate further the pain emanating from her J-tube site.
26 July 2014 Jenna is feeling a bit weak today because she´s missing the 2200 calories that her TPN gives her. She´s been able to eat small amounts today and keep liquids going in through her J-tube. She´ll have to just rest more this weekend until we can get this settled on Monday. Her Port site looks a little better today but is still red.
Bruce spearheaded one of his infamous ¨family projects¨ today and before lunch he cut down all our pine trees which lined our front patio. The rest of us hauled rocks, filled 15 bags with pine needles & bits of branches and helped get the hedge apart to be able to haul it through the door and get it into the back of the van. Thank goodness for Becca & Katelyn!
This week someone will come to fix the ugly wall & build up a planter where we´ll begin to plant some other things. Let´s see if I can keep anything alive and let´s see if Jordan doesn´t kill anything with his soccer ball!
We enjoyed an amazing asado (barbecue) for a late lunch and after a bit of siesta the girls are headed to the beach and Bruce, Jordan and I for a dip in a friend´s pool. A lovely & productive Saturday. :) It´s been so nice to NOT have to be at a clinic or hospital today!
25 July 2014 At the Budwig Clinic again today and still concerned about Jenna´s Port which seems to be growing the same kind of flesh out of the hole. It´s not easy to fit all of this in and find available Drs when we need them. She has also been complaining about pain at the J-tube site which we had looked at on Monday as well...they saw no infection but it still seems strange that she has developed pain there in the last week.
This morning she is doing various therapies - some repeated from yesterday plus a Vit C IV. She will also be receiving a variety of therapies (IV or shots) for strengthening her immune system.
One of the things we will be working on is the interplay of emotions on illness. However, we have chosen to use a trusted friend with a faith-based approach as opposed to the psychoanalytic approach offered at the clinic. Jenna has been well aware for a time that stress has played a big role in her life (too big!) and we need some time to focus properly on this area. This is not scheduled yet but please be praying for this significant aspect of healing.
Late in the day: We went by the hospital after finishing at the clinic and it turned into a LONG day; we didn´t get home til 5:30. Between checking in with an endocrinologist about her J-tube pain which meant an x-ray, contacting the insurance co and going back up to see the Dr again we only ascertained that there is no visible infection and that inside the tube is still in place.
We went by the nurses´ office/station re: her Port and that´s where it got more complicated. It was the same oncology nurse that had looked at it on Mon. She didn´t want to just cut & burn it again nor did she want to put the pin back in. She sent us to the ER to have a Dr look at it. The Dr there didn´t like the looks of it and didn´t want to re-pierce it and so it took a long time to contact her oncology Dr (we called for over an hour, then the ER Dr called all 3 of them and spoke with 2 of them). In the end, they have kept her on the same antibiotic til Mon, redressed it without putting the pin back in and since she did NOT want to check into the hospital to get another peripheral vein pierced for nutrition (this requires monitoring by the nurses), they sent her home until Mon. So, she´s surviving this weekend on the little she can eat and the liquids she can swallow or put in her J-tube. For a couple days that´s fine but she´ll probably lose a little weight...but she was adamant about not being admitted for the weekend. It looks like on Monday, they will have to put in ANOTHER PORT on the other side and abandon this one for risk of infection. Then they´ll get the TPN going again. Sigh.
24 July 2014 First day at the Budwig Clinic. Since chemo was no longer a viable option, we have been quite relieved to actually not have to go through with it! Jenna is so excited about doing good things to her body without side effects and we pray this will also be successful in building her immune system & squelching any remaining tumors.
There are a variety of alternative therapies available to her without having to eat. Today she started on a hyperthermic body capsule which swelled with temperatures up to 46 degrees celsius! (114.8F) She was sweating in there for an hour, the idea being that cancer cells don´t survive in temps higher than 43 and also to sweat out toxins.
She also did a pulsed magnetic therapy which gives small shocks to shock the immune system and prompts cells into healthier states & activity.
She received an IV full of homeopathic remedies for her situation and I can´t tell you how great it was seeing her receive something non-toxic and so good for her. ;) She did some Biocatalytic Breathing; special inhalation of essential pine oils which play the role of ¨super-transmitter in cell metabolism, reinforcing cell breathing¨. Since cancer dislikes oxygen, this therapy plus Oxygen Therapy (which she hasn´t had yet) will help oxygenate her system.
They also took quite a bit of time to ¨unblock¨ her scars on her abdomen. This Neural Therapy aims to stimulate cells to behave and communicate in a more healthy manner. With scar tissue, they don´t do that and the healthy communication in her abdomen is important to her healing. The Dr injected little bits of ?? into her scars which will break up the scar tissue leaving it more supple and prompting the cells to respond properly throughout her abdomen. This was painful to watch and of course, even more painful for Jenna who received probably 50 pricks into her belly scars! :(
All of these things are new to us and to many people, they are still controversial. Yet there are some amazing documented statistics, studies and testimonies from people healed through alternative means. As she regains her ability to eat (she is slowly eating & drinking a little each day), there will be a lot more options open to her. We are excited to move towards healing with ¨God´s good food¨ and ask for your prayers in this journey.
Jenna was pretty tired after all that and we all rested in the afternoon after a late lunch. But the girls were able to go out later for a walk on the beach and then we all ate dinner together - topped off by root beer floats since Becca had brought Jordan two 6-pacs of root beer! He put enough in the fridge for all of us and was generous to share! What a treat!
For those interested in more information about where Jenna is being treated or the various therapies being used, here are a few helps:
Budwig Center, Málaga: http://www.budwigcenter.com
Biomedic Center, Málaga (Budwig & Biomedic work together): http://www.biomedicenter.com
Biocatalytic Breathing: http://www.biomedicenter.com/biocatalytic-respiration/
Neural Therapy: http://www.neuraltherapybook.com/NTdefined.php
Hyperthermic Therapy: http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia
Pulsed Magnetic Therapy: http://www.doctoroz.com/videos/pulsed-electromagnetic-fields-how-they-heal
23 July 2014 We received Becca and Katelyn today, 2 of Jenna´s university friends who have come for 10 days. It´s so good for all of them to have such a special opportunity to be together and I feel so touched that they would pay their way to come be here with her. ;) They won´t have much time to sleep off their jetlag tomorrow as we start at the Budwig Clinic tomorrow morning!
B & K brought some very special gifts & notes from other friends and that has meant a lot to Jen. All of this happiness brings lots of good endorphins to her system and we all know that is beneficial to her overall immune system!
22 July 2014 Trying to catch up on medical things, the house, laundry and all that...We are about to begin the ¨natural phase¨ at the Budwig Clinic and are making arrangements for that. We also need appointments with Jen´s regular doctors. Jenna has 2 university friends coming from Canada & the US for 10 days to be with her and we are getting a room ready for them. We feel so excited & blessed that she has such special friends who are willing to come all this way...
In the meanwhile, the van started tweeking out & we had to put it in the shop and various things around the house need some repair. Bruce is also working through his citizenship & buried in paperwork. Life goes on in spite of our health priority! Fortunately, Bruce is here now to help with all of that ¨life¨! :) Dani will finish her dance camp intensive this week and will then be more available as well.
21 July 2014 Last night we had a little scare as we were getting ready to go out to dinner for our last night. Jen had had a blister right above her port (which has to be kept super sterile) and it had burst sometime during the day under the bandage & tape. She was scared liquid had seeped into her port. We arranged to go to a clinic, called our insurance, got there only to be told we had to go to the nearest hospital (almost an hour away). We called her oncologist (it was Sunday but when you need him, you need him), described it over the phone and he derived that it would be ok to wait 24 hrs til we were back in Málaga. That was a temporary relief although I was a bit unsure of how he could make that call via the phone. Anyways, if she got any fever or any other symptoms, we were to go to emergency.
In the meanwhile, my back was on fire & while they gave me some cream at the hotel, I was in serious pain all the way home & not very much fun! We hung by the pool (mostly in the shade by necessity) for a couple hours before heading back home mid-afternoon.
When I took Jen to the hospital both to get her next few days´ of nutrition and to have her port looked at and changed, they found another disconcerting thing: when they took out the pin, there was some kind of flesh coming out and neither the oncology nurse nor the oncologist had ever seen this before. (Why is my kid always the 1 in a million with her body??!!) They finally took us to a nursing station and decided to cut it off, cauterize both the blister and the spot on the port and then put a new pin in. OUCH! I really felt for Jenna...just when you think things are going calmly, something comes up. We were exhausted by the time we left and got back home around 8 or 9 pm, sunburned, tired and a little shook up from the unexpected little procedure & a bit anxious about potential infection. She´s on antibiotics just in case.
I went to 2 pharmacies to get something for my back because nothing was helping the terrible pain I had there. Apparently, I got a 2nd degree burn there and I have never had such a burn in my life. I got some cortisone cream & intensive rehydration cream, lay on ice before bed but still could not sleep until around 4 am. Lesson learned.
19-20 July 2014 Had such a great time this weekend...we could walk to the beach from our hotel, there was nice, cool air so it wasn´t too hot (which is probably why we all got burned!). Loved the waves & the water temp wasn´t bad so we enjoyed that a lot (except Jenna who can only get her legs wet) :( We enjoyed a great breakfast which Dad said was breakfast-lunch-merienda and had to last us til dinner! (we did buy some snacks & drinks) We could go to the spa for free so we did that, too; especially Jordan & Dad who went twice a day! Talk about waterlogged! We enjoyed the pool, too, although we mostly hung out at the beach.
We enjoyed talking, laughing, being together, reading The Call by Chambers and eating. Jenna was limited and we felt for her. But she did enjoy getting away, too, and took advantage of all she could. She was a great sport.
Did I tell you that we had booked a 4 star hotel to be sure to accomodate Jenna´s needs and that through some mistake they moved us across the street to a 5 star? Haha It was NICE and we were super blessed by that. The whole weekend we are sure we looked like campers who landed at a 5 star hotel! Jordan (13) reminded us how ¨embarrassing we are¨!
We had an awesome last dinner at the fishing port of Chiclana...it was a fresh, fish restaurant with some kind of fishermen´s social club attached. So if you want good fish, you should probably go where they go, right? It was not fancy but so typical, loud and delicious! :)
18 July 2014 We did it! We actually packed, drove 3 hours and landed in the beautiful coastal area of Cádiz. We have a lovely hotel that is clean and easy for Jenna to get around in with her pole. We have great access to the beach and the pool and even though Jen can´t take advantage of everything, we can be together. Such fun to have this weekend spread before us!
It was really the first time to be in public with the pole & nutrition and we all felt people looking at her. It is not near as discreet as the NG tube and portable smaller, nutrition & pump that she could hide in her purse. The pole seems to shout ¨serious illness!¨ and she didn´t like it at all.
In her 6hrs off of nutrition, we will gauge the activities to the ones she can only do without it (the beach) and ones she would like to do without it (eat dinner). It´s different for us to have these limitations but this set-up this weekend is very accommodating. We are all tired & these are our first days of rest in these 7 months of battle (except for Bruce who has had some sabbatical days).
Yesterday we got some time on the beach in the waves and light sun and later on had a great Italian meal. We´re looking forward to this full day here today...the guys got up early to go to the spa...they´ll probably want to go back to bed after that! Then we have to eat a big breakfast cuz we have to make it last til dinner! (We´ll get some snacks to hold us over.)
17 July 2014 Ok, today my husband is driving me crazy! He´s trying to do everything in one day that he hasn´t done for a month! Why doesn´t he get that this can´t be done?!
Kudos to Jordan who took his final exam for his online English class today. It has NOT been easy to study this year and especially not in the summer since we had taken a break from it and had to finish after school got out. Dani got to ¨Proctor¨ the exam since she likes to play teacher. :)
We´re getting the attic area ready for guests since Jenna has 2 APU friends coming for 10 days next week! We feel so blessed that even though her illness has kept her from school this year, that several are coming here to spend time with her. Two more are coming in Aug/Sept. So cool!
Jenna had her first physical therapy appt today and got a lot of knots built up after a month of laying around at the hospital worked out. She got some light abdominal exercises that she can start now to start rebuilding her core post-surgery. She´ll have to wait to do anything more serious until 2 months have passed from the yeyunostomy.
Had to take a cooler & a suitcase to the hospital today to pick up 4 days of nutrition & a month of supplies! Took Bruce with me to introduce him so that he can do some of the pick-ups. Good strategy, right?
16 July 2014 We are moving ahead with naturopathic therapies for Jenna. Next week we will start at the Budwig Clinic and probably spend 3 mornings a week there for a month and see how she does. She is actually drinking some water, juice and tea and is even taking some food off of our plates! We´re not sure how that happened - except that so many are praying for her intestinal tract to normalize. :) May it continue!!
Bruce was a zombie all day as he couldn´t sleep last night, poor guy. Tonight he should sleep great after running, doing stuff around the house, receiving a visitor and hanging out with us. He took Jen to the hospital today and while we were talking in the living room, he fell asleep right in the middle of the conversation! haha The girls met some friends at the theatre and saw a movie and when they returned, we caught up in the cool of the evening on the porch. Jordan ¨put Dad to bed¨ haha as he was so out of it! The rest of us went to bed later.
15 July 2014 We are all THRILLED that Bruce is home and we spent a lot of the day talking about his trip, losing his Mom, the memorial service, etc. as well a many special people he got to see & all the encouragement he received about our situation through them. He also was so touched to hear many special things about his Mom - some that he didn´t even know!
Between various things (studying English with Jordan, Dani´s Phys Therapy appt, laundry & unpacking for Dad), we talked and enjoyed being together - and laughed a LOT. We are happy & encouraged this week & keep pressing forward one day at a time. The kids presented Dad with a collage of welcome with photos they had found from a lot of different eras & he loved that.
Sitting out on our porch and having a light dinner was awesome in the cool evening air. Being together is the best!
14 July 2014 Encouraging appointment at Budwig Center, a holistic, alternative medicine center for people with serious diseases, especially cancer. Apparently there are many therapies that Jenna can take advantage of without being able to eat & drink. Therapies that target cancer cells & which environments it thrives least in: sugarless, oxigenated & temperatures over 43 degrees centigrade.
Thankful for a great situation for Jordan this weekend, that Bruce arrives tomorrow & for an encouraging meeting today at Budwig Clinic. Thankful that Jenna is stable & enjoying her (limited) life at home. She is starting to drink & eat a few things. This is awesome!
13 July 2014 Quiet day. Stable is good! Quiet is good. Quiet morning & went out to lunch with the girls (Jordan was at his friends´). Poor Jenna could only order water but she enjoyed being out. Looking at the menu in the Italian restaurant, she commented, ¨Wow. Serious food porn.¨ She does have a way with words. haha.
12 July 2014 Today Jordan took off with friends to a lake; everyone says how great a time he seems to be having! It´s true...and also a blessing. I´m super grateful to have so much help to keep him busy at this time. :)
The girls and I basically layed low today & enjoyed a visit from Martin around midday. I wasn´t feeling great and stayed home while the girls went to some Japanese gardens during Jenna´s time off from the nutrition.
Jenna loves being at home. It´s so great to have her here. She is stable & is managing her nutrition well.
11 July 2014 Had a special time with our nurse friend Catherine. She has been like an angel to us, helping me sift through medical info, options, definitions, how things work, oncology, how to help Jenna, etc. Her 30 plus years of experience as an oncology nurse has been such a blessing to us. Today she unexpectedly - and yet carefully & wisely - showed us another gift of hers: a gift of science where God gives her special images of people´s tumors. Similar things have happened to her since she was a child. The Lord showed her where there are 4 spots in Jenna´s abdomen - she even drew what she saw. She felt this was given to enable us to pray more specifically for Jen´s exact situation. (more in Prayer Requests & Blessings).
We are really missing Bruce. We all can´t wait for him to be home and are praying a lot for him as he heads into tomorrow´s 2 services; lots of people & lots of emotion.
Had to work a lot with Jordan on English as we are nearing the end of a semester in his online course. We had a Skype with his teacher for an oral exam and are getting ready for next week´s written course exam. It´s a lousy thing to have hanging over our heads right now but it is what it is.
The girls went to the beach for a while after 6pm when Jenna had her rest time from the nutrition. She can only be ¨unattached¨ for 6 hours a day; she is choosing 6-12pm. It is such a relief when she can move around without any tubes...
10 July 2014 First full day at home. We all left Jenna sleeping and went off to different things: Dani to dance camp intensive at 10am, Jordan to a water park with friends at 9:30 (a real stretch for him!) and me at 10:30 to go to the hair salon. When I returned, Jen and I made an appointment at a natural health medical clinic for serious illnesses for Mon; we´re looking forward to that.
I had to go back to the hospital to get 4 days of nutrition today and more supplies. This is going to be a bit restrictive...I have to go on certain days and in certain hours.
The highlight of the day (and of the week!) was a gathering of 20 young people at 8pm to pray & worship. It was an incredible time and blessed us deeply. There were lots of special words & prayers and lots of tears. We are all blown away by the outpouring of love & compassion by so many. I pray God will reward the faith of these young people who have cried out to God for months on Jenna´s behalf.
Jordan came home at 11pm (thanks Chandas and Pringles!), tired & happy. We all got to share about our day and fell into bed, blessed.
9 July 2014 I went to the hospital at 10am and the endocrinologist had already been by to tell Jenna that the nutrition would be ready around 3pm. In her determination to ¨be free¨ she told me that she wanted to leave by ¨alta voluntaria¨. They had already been stringing her along and all we needed was the hospital pharmacy to confirm what time they would have her nutrition ready - and since we live 10 min from the hospital, why wait there?? I told the nurses of her intent and things changed in a hurry! They came up with a check out really fast! haha So we had her home by noon and were we ever happy! It was such a relief to have her home with us I can´t even express it.
Such a happy day! Dani helped Jordan with some English work online and I went to the hospital pharmacy to pick up supplies & nutrition late afternoon. We had some dear friends visit & that was precious to us. All 7 from this family made a big effort to see us in spite of their own grief process at losing their dear Rebecca (the 19 yr old I wrote about earlier). It was bittersweet sharing but we were blessed by their love.
We got to watch Argentina-Holland at 10pm and fortunately for us, Argentina won in penalty kicks!! Wow. We had to stay up tip 1am to see it all but it was worth it! All our Argentine friends are so excited about this huge victory - and on Argentina´s Independence Day no less!
8 July 2014 The pump arrived and they showed Jen how to use it (they´re all similar) but at this writing (8:45pm) I´m still not sure if she´ll be home tonight or not! There are still some pending details with paperwork & the hospital pharmacy who will be making her nutrition to spec. Sonia stayed with her all morning and Lidia went by, too. Dani has been with her all afternoon.
I had the great blessing of having a friend offer to help me clean the house in preparation for Jenna´s arrival and I was thrilled and totally grateful. Tara worked for 4 hours and everything looks so good! I cleaned, too, and although there are some areas still to be done tomorrow, all the areas Jenna will be in are good. She needed a sterile table for doing the nutritional changes so I have scoured a plastic table with bleach and bleached a clean sheet to cover it. It will also be covered with disposable sterile cloths. All of this sterility makes me nervous! O Lord, please protect Jenna from bacteria & germs in this house!
9pm Just got word that Jen has to stay one more night. Bummer! Can´t wait to have her here tomorrow!!! Dani is sad and Jenna is mad...Watched a sad game between Brasil-Germany where Germany literally annihilated Brasil in a 7-1 victory. So sad for the the hosts of the World Cup and a country where futbol is everything..
7 July 2014 It´s still unsure if Jenna will be able to go home tomorrow. The new pump that she is to take home is not here yet. However, the Head of Endocrinology spent a lot of time with her in the afternoon going over all the details of TPN and was really pleased at Jenna´s understanding. I spent some time with her in the morning and took Jordan back for a visit in the late afternoon. Dani was there in the afternoon and Sonia came to spend the night with Jen. Jordan and I struggled through some online English and he is pretty determined to convince me that he doesn´t have the emotional energy for it this summer! (That makes 2 of us!) We miss Dad...
Thankful for Sonia who is spending the night with Jen. :)
6 July 2014 Dani took Doug down to our former church in downtown Málaga and he spent the afternoon with our dear friend Emilio who took him around to see some things. He loved it! And he loved Emilio! (Who doesn´t?!)
I spent some time with Jen at the hospital in the morning and then met Dani at home for lunch. She went back to accompany Jen while I rested. After going back to the hospital and meeting up with Doug again, he prayed for Jen one more time and said good-bye to the girls and I took him to his house where he will use the evening to prepare for his time in Africa. Tomorrow at 9am I´ll take him to the airport.
I picked up Jordan and had to tell him about Grandma. He has a hard time understanding why all these things happen to us. It certainly doesn´t feel fair. I feel completely inadequate to help him navigate these huge issues at 13. I really need the Holy Spirit´s discernment and all the Mom´s intuition in the world...He was so sad that we didn´t go back to the hospital as I intended but stayed at home. The girls are receiving the Falcos, long-time family friends from Argentina, at the hospital for a visit. Hopefully, he´ll be up for visiting his sister tomorrow...
5 July 2014 I took Bruce somewhat reluctantly to the airport by 10am. I hope he is able to see his Mom one last time but if not, I am sure that he has loved her so well and told her all that is in her heart in the last months that she may feel peaceful enough to go and not wait for him.
I took Jordan to a friend´s house (thanks, Chandas!) and Doug to the hospital. We had a good long talk and prayer time. There are so many things to think about...how do you balance having expectant faith for a miracle and yet be realistic in a grief process when you don´t know what´s going to happen? How do you spend your time? Do you plan? Do you say good-byes? We´ve agreed that only the Holy Spirit can guide in this unique time. He is the only One who has a clue what´s going on! We must be completely dependent on how God is speaking in this time to each one of us. Another good thought was the distinction between having faith in faith and having faith in God. It is easy to think we have to ¨have enough faith¨ to get what we hope for but if it were about that it would be dependent on our effort, our faith and not on God Himself. That was helpful for me.
Doug took Dani out for lunch while I stayed with Jen. They ended up staying out til 8pm! She took him souvenir shopping & they had a great time. At 4pm or so, 2 friends came to spoil Jenna and that was so neat to see. They brought stuff to do a pedicure & manicure, massage & face masque. Wow! She felt so happy & loved & pretty. :) Gracias, Sonia y Cristy! We had good conversation about many things: faith, healing, grief, death, etc. It has really been a sacred time.
Dani took Doug over to his ¨new house¨ then went back to the hospital. Jordan came home for some things to sleep over at his friend´s house and the Pringles sent us homemade pizzas again. Wow. Thankful for so many things...
I got an e-mail from Bruce´s sister that Grandma passed into heaven at 5am California time while he was traveling. While that was disappointing it was not unexpected & Grandma is where she has longed to be for a long time now...there is still, of course, our earthly longings & sadness. Here is my tribute to her that I wrote a while back:
http://www.alifeofinterest.com/2014/03/dear-grandma-have-i-told-you.html
4 July 2014 Last night Bruce came to bed at 3am after picking up a dear friend and pastor of a church who is here to visit for 3 days on his way to Africa. The timing is a bit complicated especially now with Bruce leaving but we´re making a plan and Doug is sensitive & only desires to be a blessing which we´re sure he will be. He and the church have stepped up in a great way for our daughters since they´ve been in S. California and have given much practical support that we as parents are so grateful for (the girls, too). I have no idea why they´ve been so especially personal & supportive but we thank God for that.
Today Bruce took him to churros for breakfast, a meeting for NA partnerships and to meet our teammates the Ludis. After that, they spent most of the afternoon at the hospital talking with the girls and I. Doug is helpful in helping us navigate the torrent of difficult questions that are racing through our minds & hearts.
Jenna had a significant visit with an old time friend and former youth pastor of hers, Samuel. Such a great guy. One of the things he said to her has really struck her and she´s holding onto it: ¨Just because you live each day as if it were your last doesn´t mean that you are preparing to die. Living in the present is the closest thing to heaven because in heaven we will continually live in the present.¨ I thought that was pretty profound.
Jordan has been to the beach today with the Ludis and we all met up at the hospital at 10pm with pizza to watch the World Cup game (Brasil-Colombia). These latino countries are hard for us to decide on in that we have friends from all of them and wish they all could win! So fun to watch that together. (I think Doug was asleep through the 2nd half due to jet lag). haha We also talked with Bruce´s sister by phone and both Jenna & Jordan were able to say their good-byes to Grandma. It was such a semi-sweet evening.
Almost completely forgot about the date...Doug reminded us & mentioned how non-existent the 4th of July is outside the US. We have been outside the US so long that we even forget! It´s amazing how powerful commerce is in not letting you forget about an upcoming date...
3 July 2014 Bruce went to the hospital mid morning and I am getting some quiet time to write at home. :) We´ve had to talk with our teammates here and some close friends about these recent important conversations. We also have Bruce´s Mom on our minds as she seems to be in her last days. How can all this be happening at once?? Thankful for Donna, Bruce´s sister who is caring for his Mom and feeling badly that we couldn´t be with Grandma this summer. Of course we have no idea about when something could happen and our situation here now is complex. Bruce was just gone for a month and we are not anxious to let him go anywhere. We can only trust in God´s timing.
Jenna told me this morning by phone that the Endocrinologist said she won´t go home til Tuesday. Bummer. But they have a plan for her training: she will be changing her own nutrition under the nurses´ supervision over the next few days. She is reading the manual & getting any questions ready. The new machine - infuser pump - should arrive today and they will switch it for the one they have been using so she can be practicing on the one we will actually take home. On Tues she will have a ¨test¨ by Dr. Almeida, head of Endocrinology (a wonderful, teddy bear of a man!) and if she passes, she can go home! So I think we will feel confident by Tues about being able to manage the TPN. Thankfully, our insurance ok´d all of this and everything is falling into place.
We got a phone call from the hospice nurse that Grandma is indeed in her last days. She has not eaten or drank since Monday! So, although the last thing we want Bruce to do is to travel again, it´s the right thing to do and he spent time this afternoon working out some flights. He´ll leave Sat am and return Tues the 15th. What a week.
2 July 2014 No parenting book prepared us for this day. No one can teach you how to talk to your kids about death; at least no one really taught me. Bruce & I went to the hospital in the am and talked with Jen openly about her situation and probabilities and what her wishes regarding chemo were. We were all in agreement about quality of life and looking into the Budwig Clinic, a naturalist healing center for cancer patients. We talked about how to talk to Jordan especially and planned to all meet as a family later in the day when Dani was back. We also had a 7pm appt with Dr. Ortega, Jen´s main oncologist and a guy very latino & endearing in his communication style. We were anxious to get his input.
So we talked together as a family about the new realities which the last week has revealed: 1. the surgery for the J-tube revealed that the cancer is growing (although they didn´t take a biopsy so we´re not 100% certain that it is cancerous but the surgeons are very experienced in this & it makes sense since it´s been 4 months since her big surgery) and 2. her only nutritional option at this time is TPN by IV and the risks of infection are much higher. Chemo is NOT an option in conjunction with TPN.
We spoke about how to confront this new reality and our need to respect one another´s process & coping mechanisms. Together we want to walk in faith & hope in Christ while being honest about our emotions - sadness, confusion, grief, fear, etc. This will be a learning process for us & we pray for His grace in our midst.
Dr. Ortega was very empathetic, thorough, more optimistic than the other Dr but very different in every way about how he communicates things. He loves Jenna and always seems amazed at her beautiful spirit and physical beauty. He thinks she´s mature beyond her age and she that ¨with a glance he knows that she knows what he is going to say and that he knows what she is thinking¨. They have a special understanding. He insists on us calling him anytime, day or night. His heart is breaking with ours as parents and he will do whatever he can to support us. Even though the basic information was the same, we felt loved & supported & more positive leaving there and going back to the room to talk again to the kids.
Jordan wanted to spend the night with Jenna and she was thrilled. Now that she´s more stable & sleeping better at night, it´s not a hard job. So Dani came home with us and for a while we each attended to various things: UCI finances for Dani, personal finances for Bruce, and I was on the phone with our medical insurance company. At 10pm we gathered for Dan P´s homemade grilled pizzas and a glass of wine and had great conversation with our beautiful Dani. Fell into bed at midnight.
1 July 2014 Such a relief to have Bruce back. I picked him up and took him right to the hospital to see Jen who was so happy & relieved. It´s great to have ¨fresh blood¨ around bringing strength & new stories. We went home for lunch with Jordan and I must say I haven´t seen Jordan laugh that much in a long time. :) After a rest, we met up at the hospital again (Dani started her dance camp today), talked & laughed & watched Argentina-Switzerland online of the World Cup.
Later the endocrinologist came by with a manual on TPN for Jenna to read and one of the oncologists came in, too. We had a lot of questions about TPN, whether Jenna´s intestines will ever be functional (they don´t know) and if chemo is now out of the question. They answered as best they could, but later the oncologist called Bruce & I privately to his office to speak just to us. So there we had THE TALK. The one where they lay out the cold, hard reality and tell you things they never said before (or at least that you never heard before). Gastric cancer is terminal. With metastasis, life expectancy is around 10-12 months. The chemo wouldn´t kill it anyway even if they could administer it...just prolong her life. What would he do if if were his daughter? Take her on a trip and enjoy as much quality of life with her. I felt my heart stop. Tears welled up and ran down my cheeks. It was an unreal moment. The Drs have definitely been more indirect up til now...but with the exhausting of nutritional options for her, chemo is being ruled out and short of a miracle, she could die.
We had to return to Jen´s room where the 3 kids were and a friend who was to spend the night with Jen. We really wanted to talk to Jenna´s main oncologist (appt tomorrow 7pm) to get his input and because we have a much better relationship with him than this other Dr. We decided to calm ourselves, wait to talk to Dr. Ortega the following day, talk to Jenna privately first and then to her siblings about this new reality. The first oncologist didn´t think we should tell our kids but our family is much more open - and besides, the kids are smart & are already making their own assumptions about how things are panning out. It was already 10pm by then, Bruce was jet lagged and we decided to have these conversations tomorrow. Although the kids knew something was up & we gave a brief synopsis of some of the generalities of the conversation, we didn´t really get into it.
Back at home, we got something to eat and watched some World Cup (USA-Belgium) before falling into bed.
30 June 2014 First night without throwing up in the night!!!! So excited as it seems to be FINALLY slowing down. Things are moving out and down and this is good. Our friend & teammate Laura stayed with Jen while Dani and I went downtown for some dance clothes & shoes as she starts dance camp tomorrow and has so many things that are worn out. So much fun for me to be able to do that with her. :) The kids are working on a little surprise for Dad as he returns tomorrow!!
Had a difficult yet significant talk with Jen (& Dani) who was discouraged & fearful about death. We haven´t talked much about death (1) because the Drs have always held out hope & a plan for a ¨curative treatment¨ and (2) we just haven´t feared for Jenna´s life in this process. Although we know that Stage IV gastric cancer has a terrible mortality rate, her case has been ¨light¨ with no vital organs or nodules affected, just small spots outside the stomach and the original umbilical tumor. But our friend´s recent death and all the difficulties with Jen´s nutrition and the delays in chemo have made questions arise for all of us. I guess in summary we decided that while we´re open to talking about death whenever anyone feels the need, we´re not going to operate with that thought on our shoulders or let it dominate us. We are in a fight FOR LIFE and don´t plan to focus on death.
In the early evening,with perfect timing, 3 of Jenna´s best friends here showed up in crazy Moroccan outfits singing ¨Ain´t No Sunshine When She´s Gone¨. So great to laugh & so thankful for friends willing to make fools of themselves in the hospital!! haha (photos under Blessings).
29 June 2014 A slightly better day with a couple more trips to the bathroom; sorry for the gory details but better down than up! That´s progress. She is extremely tired and rests much of the day. She did get out to the sunny patio a couple times today; with Jordan pushing, we even ¨escaped¨ and went outside and around the block! haha. Dani got out to our old downtown church and out to lunch with a friend. By late afternoon, Jordan and I headed back to the house. Hoping for a better night tonight.
28 June 2014 Another long day for Jenna. She threw up several times in the night despite their attempt at giving her more rest through some sleeping pill! You just can´t sleep through that. :( Dani & I were alternately with her with no visitors so that she could just be quiet. The throwing up has definitely slowed down but to me it is still unbelievable that 4 days have passed without the nutrition on and she is still vomiting! How can this be?! When will her body be rid of this stuff?! The Drs say they´ve given her all they can... She was able to go to the bathroom today and I hope this will help her tomorrow. She is so weary that she is resting all day long...not even looking at her phone or computer or a book or trying to talk. I took her in a wheelchair outside to the patio again today - a little sun & fresh air is so good. But it breaks my heart to have her so weak that we have to use a wheelchair...
I don´t even know how to encourage her anymore...what else can I say or do? When will her God show up? How much longer will she suffer like this? As a Mom, I have run out of answers.
The only thing Jen was kind of awake for (besides the trip to the outside patio) was the Brasil-Chile game which turned into a nail biter with overtime and penalty kicks! Personally, I am so happy for the enjoyable distraction that the World Cup is for us right now & thankful that we all enjoy futbol!
Happy, too, for friends who are providing fun & distraction for Jordan. After his friend´s b-day at the beach yesterday, he went back to Alvaro´s house for a sleepover and spent all day Saturday there! (At least someone is having fun, right?!) Gracias, Mónica; eres genial!
27 June 2014 Jen had a better night and the vomiting is slowing down although still very present. She is nauseous a lot and therefore resting a lot. We just keep putting one foot in front of the other and following what the Drs advise. We are a bit nervous about doing TPN (see 26 June for more info) at home due to the higher risks of infection but at least it should keep her stable and give her the ability to be at home. Bruce gets back on Tues midday here and it will be great to have his stable self to help anchor us all.
Dani is firming up plans today for how she will be spending July since not a lot of work has arisen. She has one option but it is way too few hours. It looks like she´ll be doing a local day dance camp and that should be a good boost for her to be busy and dancing.
Had a beautiful time praying with Dora today. She came over and anointed the room and Jenna and we just let Jenna mainly sleep while we prayed over her. So precious.
26 June 2014 Today is Bruce´s birthday. He´s in PA now and we have a 4pm skype call with him. I think the best birthday present would be some good news! I am praying & hoping for that today...Dani is back now & we are looking forward to having her with us. Jordan is still with the Ludis. :)
Both the oncologist & the endocrinologist came by today with the latter bringing significant news. The priority of Jen´s medical team is to get her stable, to stop vomiting and to clean out her intestines. She can´t go home yet but they REALLY want to get her home because it makes a significant difference in everyone´s anemic state and ability to cope. It´s getting really old here. With this unexpected difficult time with the latest attempt at nutrition, the J-tube, things have not panned out. For whatever reason, her intestines move too slowly to receive nutrition into her gut. They have only ever seen one patient like this before. We need to PRAY those intestines into motion!
They plan to train us to manage TPN (Total Parenteral Nutrition) at home. This is IV and they can give her up to 1600 calories per day. Then, in time, and slowly, we can reintroduce nutrition through the J-tube. Eventually, the hope is that she will ONLY use that and then, of course, add eating by mouth. It´s just taking sooooo long. My oncologist US nurse friend Cathy says this would stump even the brightest in the US and assures me that we are in good hands. They are putting this in motion (paperwork, etc.) and she´ll go home sometime next week.
25 June 2014 Last night was even worse. The vomiting was throughout the night and I must say a huge THANK YOU to Raquel who was there with her. Tonight I´ll stay with her. Fortunately, I have been able to spend almost all day here as the Ludis (our dear friends & Argentine coworkers) took Jordan to the beach in the afternoon & then to spend the night. Jenna has had a really rough day and was sleeping on & off all day from exhaustion. She had a few visitors that she enjoyed (thanks, Miguel, Lucas & Almu and Leila) but she was really weak. We read Psalms & listened to music and I massaged her hands & arms. Oh to be able to give her healing & deep, deep sleep myself!!
The Drs plan to restart this plan & encourage us not to let ourselves get exasperated. They will restart the nutrition (which has now been off for more than 24 hrs) super slow and increase the speed VERY slowly. We also still need to find the most effective med to stimulate her intestines and get them moving regularly at the same rate as the nutrition is entering. This balancing act is quite complex.
We enjoyed watching Argentina win their final match of the first round of the World Cup. :) Jenna is often wearing an Argentine t-shirt these days & everyone around here knows where she stands. :)
24 June 2014 Wow. Things took a turn for the worse. Jen was throwing up from 3-5am. Thankfully, her friend Christy was there with her and of course, the nurses were there. They had to turn the nutrition off and try to stop the vomiting but it continued most of the day. It seems her body reaches a certain saturation point & starts rejecting the nutrition - no matter where it comes in. Definitely disheartening.
23 June 2014 Things are calm today. They increased the velocity for the nutrition to 60. The idea is to get to the rate which will provide about 1500 calories so they can disconnect the parenteral nutrition (by IV) and she can go home with just her new J tube system. The endocrinologist is working out the necessary equipment with the company we´ve been using & the rep came by today. We need to stay on top of the med for keeping her intestines going now that she´s getting a fair amount of calories. Jenna is definitely sick & tired of the hospital and REALLY wants to be home by Wed!!
Hoping Spain can win today & redeem itself slightly from an embarrassing World Cup so far! Glad we still have Argentina to root for! (And we also track with the US each Word Cup to see how they´re improving.) Dani heads tomorrow to Morocco for 2 days & that should be great for her.
22 June 2014 Jordan & I got to go to church and share the good news of this week - although we are all quite heartsick about Rebecca´s passing. It was really sobering; it brought a lot of sadness and actually brought Jenna a lot of fear about death. For the first time she really came face to face with the fact that there really are no guarantees. Everyone is always saying here, ¨You´ll see how this will turn out well.¨ or ¨You´re a great family, of course she´s going to be fine.¨ No one can say that! Bad things happen to good people just as the rain falls on the good and the evil. We had to really pray over her & break the power of that fear.
Plus Dani really hit a wall today. She just couldn´t take the hospital any more. She´s so loyal, that this reality was eating her up but she really needs a break and so she stayed home most of the day and we plan for her to be home tomorrow as well. She´s going on a quick trip to Morocco Tues/Wed to see some dear friends and that will be so good for her. Jenna has arranged for some friends to spend the next couple nights with her.
I´ll be on my own so to speak on those 2 days but the Lord provided for Jordan a great outlet this week every morning with a couple friends and he´ll be busy up til lunchtime. So thankful!
21 June 2014 Today is the first day I haven´t had to set an alarm for a while! So nice to have a slow morning...first day of summer. We are so sad for some dear friends here in Malaga who have been fighting for their youngest daughter´s life (a genetic liver disease) and who passed away yesterday. Unbelievable sorrow for the parents, her 4 siblings, her boyfriend and all who knew her. All the young people of Malaga are in shock. Her oldest sister is the one who went with Jenna to Kashmir, India a number of years ago. God´s plans are so far above ours...we can´t get our minds around it. I am heartbroken for the Mom and all the family...
Today, hopefully, they´ll begin passing nutrition through the new tube at a slow velocity. We´ll see how her body tolerates it. Hoping and praying for the best possible outcome!
20 June 2014 Hard time sleeping, can´t get comfortable. There are a lot of tubes and she can´t use her abdomen to move much. They are trying to monitor the different meds for pain, nausea, anti- inflammatory, hydration, etc., so there are lots of tubes. We´re surprised at how long the J-tube is hanging out; it seems quite cumbersome. Not sure if they´ll shorten it or not. Her J-tube is draining a lot of bile today and since she´s only thrown up once this morning, perhaps this means things are less inflamed and things are heading downward (thank God!). The Drs have been very attentive and each day we´ve seen a GI Dr, an endocrinologist and an oncologist. Today was Jordan´s last day of school and they celebrated by going to a water park (some people have all the fun!) I picked him up happy, sunburned and tired. We watched some World Cup (France looks amazing) and then fell into bed.
19 June 2014 Day of recovery. Lots of sleeping, resting. Tried to get up with Dani & I to go to the bathroom but she almost fainted and we had to call a nurse & get a wheelchair to get her back to bed. She wasn´t feeling too good for a while after that, but she came back. Late in the afternoon, she began to throw up and it was nasty - yellow/green bile! I called the nurse the first time because I wasn´t sure what it was and why she would be throwing it up. Later the surgeon explained that because of inflammation around the surgery site where the tube is, bile excreted into the intestines above it can´t get by and has to get out somehow. Poor thing! It hurt her abdomen so much to throw up. Dani & I stood with her and it got better after about 5x.
18 June 2014 This morning we were visited by Jenna´s first Dr who had operated on her umbilical tumor. We all think he´s great and the kindest of the bunch. We haven´t seen him in a long time and it was strangely reassuring to know he would be the one doing her jejunostomy. We had a great visit with teammates Kyle & Nell and will miss them this summer! Dani loved working with their daughter Mikayla in dance; it gave them both life.
The surgery was scheduled for 7pm but they came and got her at 5pm! So we´re here waiting it out. I´m hoping the surgeons aren´t rushing things in order to get to see Spain play at 9pm in the World Cup! Haha. The first thing Jenna said when they told her the time of the surgery was, ¨That means I´ll miss the game...¨ Her Dr said, ¨I thought the same thing!¨
Surgery went well. She´s sore & sleepy but happy. The surgeons said her intestines were ¨as if she had never been operated on¨. This is a big surprise to them - and an answer to prayer. However, we know they are also not functioning as they were pre-surgery. But it´s super positive. It´s really critical at this point that Jen can get nutrition & chemo as soon as possible...
17 June 2014 It feels like this was the day we were waiting for! Nothing amazing happened during most of the day except that we had a great visit with Catherine, our nurse friend and she took so much time to explain a lot of things to us. She has consulted with a great GI Dr at UNC and he is pretty much in agreement with Jenna´s doctors so that was reassuring. It is apparently a complex situation without a lot of clear answers. The best guess at the sudden vomiting is a combination of slow intestines from the local chemo and the site where the esophagus was attached during surgery to the small intestine developing some scar tissue or nerve or muscle damage in this process. Hopefully the parenteral nutrition is going that area a rest and giving it a chance to heal. Then later in the evening, Jenna called to let us know that some Drs came by to tell her they had discussed her case in the team meeting (interdisciplinary) and decided to go for a jejunostomy instead of parenteral nutrition at home. This tube inserted into her small intestine through the abdominal wall will become her new feeding site. Hopefully, the nutrition will stay down since theoretically it will bypass the area where the vomiting is triggered! You may remember we asked for this a long time ago but they didn´t feel it was good in Jenna´s case. Now there´s no choice. With this J-tube, she will be able to continue with chemo.
16 June 2014 A long & tiring day with no new news. We´re pretty tired of this. There don´t seem to be any further answers but there will be a team meeting of doctors tomorrow afternoon. I have been praying for light & discernment for the doctors and today I was meditating all day on a devotional statement I read from our former pastor in Buenos Aires; ¨God said, Let there be Light.¨ I meditated on that and thought about the power of God´s voice to speak illumination into the universe - powerful. I prayed this all day long over Jenna´s situation...a couple dear friends joined me to pray at the hospital as Jenna was getting an endoscopy. Later on they told us the endoscopy showed everything was normal. So frustrating!
15 June 2014 Thankful for another phone conversation with Catherine. She is going to consult with a GI colleague in the US re: Jenna´s case & do some more research. I think we are doing more work than Jenna´s doctors! We are requesting to see the GI Drs in addition to the oncologists & an endoscopy for further testing and regarding possible med for paralized ileus. At least for now she is getting nutrition by vein and it is possible we may have to do that at home as well even though it has greater risks. They would NOT be able to continue chemo, however, with that due to the heightened risks of infection brought on by lowered defenses from the chemo. So I don´t see that as a great answer. We really want to get her eating again and moving forward with the chemo. We expect a restful day today as Jordan heads into his last week of school. Argentina plays tonight in the World Cup; unfortunately it starts at midnight for us!
14 June 2014 Thankful for a phone call with Catherine, an experienced oncology nurse from the US who is living here in Spain now. She gave us another idea to pass on to the Drs - a possible paralized ileus - or part of it which would greatly slow down the processing of food. It is basically nerve or muscle damage (in Jen´s case, most likely from the chemo). This takes a different kind of med than she´s been getting for slow transit. We mentioned this to the Drs. I kicked Dani out of the hospital to go get a break and get out tonight so she took off to youth group, a birthday party & a sleepover at her friend Katie´s. So happy she gave herself permission to do that. Jordan played in a tournament with his new team today & his coaches were pleased with him. I´m so proud of how hard he´s worked this year in spite of all the personal stress. At night he went to the year-end event at school with some friends and came back super late! He was happy & exhausted! Jenna´s friend Christy is spending the night with her. :)
13 June 2014 The swallowing test in radiology showed no occlusion in the intestines. They are clearly slow from the localized chemo during surgery & who knows when they will go back to normal. There is definitely something wrong, though; something is not permitting food to go down. We´ve discussed possible intolerance to the nutrition - but it happens even with other food. We´ve asked about doing an endoscopy to look closely at especially the sutured spot between esophagus & intestine and about any other further tests to provide clues. The fun event today was Spain´s first World Cup game which we all watched at the hospital with snacks and painted faces. Unfortunately, Spain played embarrassingly bad! But the World Cup is always a fun time at our house.
12 June 2014 Jen is now on parenteral nutrition (by vein) and is doing a test to look at her intestinal transit; she swallowed a liquid and they look at it in Radiology in that moment, at 6 hours and at 12 hours. Tomorrow we should have some word on how this went. Last time it showed no occlusion. We are praying it will give some clue as to the constant vomiting. Pls pray with us. Thankful for Dani who can be with her while I divide my time between home, hospital, Jordan´s school & futbol. We are rejoicing tonight that it looks like Jordan has made the high level competitive team! He will be playing in a tournament this weekend.
11 June 2014 Today Jenna was admitted yet again to the hospital. The continual vomiting is unacceptable and unanswered to this point. After seeing the Head of Endocrinology, he was determined to ¨get to the bottom of this¨ and had her admitted. She did blood work for the oncologist & should get another fresh bottle of continuous drip chemo tonight. While they do further testing on her intestines to determine why & where exactly things are not functioning, she will get parenteral nutrition (by a main artery) instead of her NG tube (which goes right into her gut).
10 June 2014 Just discouraged by continual vomiting. Jen has had the machine mostly turned off which means little to no nutrition. She has been sipping water with fresh ginger slices (for nausea) but to little avail. Had such a nice visit with Lynne Ellis from WA, an outreach leader from a church there who listened and prayed with us. Thank you, Lynne.
9 June 2014 These are tough days for Jen. The vomiting is not improving and we went in to see the Oncologist on duty. We waited quite a while for her to consult with the GI Drs and we finally left with a different, stronger med for intestinal movement & stimulation. Jenna can literally feel liquid accumulating without being able to go down and finally it has to go somewhere so her body throws it up. Only turning off the nutrition machine gives relief and then she gets no nutrition! There are so many ups and down on this long road...
8 June 2014 Another rough day. I am going to march into the hospital and demand some answers tomorrow! I have had it with this!!! If they can´t come up with a solution, then point us to someone who can!! Please pray with us for answers. She can´t continue to live like this. I was wiped today and we all took a day to rest - except Jordan & Dani who studied for Jordan´s French exam tomorrow for several hours. Basically we talked, ate some lunch, watched some tv series on the computer...talked about what the Lord´s been saying lately, I did some writing. Wanted to go to an informal concert tonight but no one was up for it. :( Tomorrow is another day.
7 June 2014 Rough day. Lots of vomiting. Jenna finally turned the nutrition off and we fixed a way to pass a hydrating drink through her tube to keep her hydrated. It´s so frustrating to feel helpless and to feel like there are no answers. Enjoyed our visitors last night and today midday, Fred & Kristen from AZ. They are fun to be with and were so sensitive to our situation. Jordan played his last league game and unfortunately we got the worst ref of the year. I´ve rarely seen anything so flagrant! He plays his first international game on Mon pm against a Swiss team. :) Lots of studying today for upcoming finals and then a relaxing evening watching a movie and finishing Wimpy Kid. :)
6 June 2014 So good to all be under the same roof. Except for Bruce who is now in Canada. :) We are all well; Jenna´s nutrition is humming, less vomiting but still no eating by mouth. The chemo is silent and only the bottle around her waist reminds the rest of us. Dani has a terrible cold and both Bruce & Jordan have had colds. But I´m thankful that in this whole year so far, Jenna has had NOTHING. Thank You, God! May it continue to be so, even with chemo.
5 June 2014 She´s home! After running the chemo all night and everything being fine, the oncologist gave her the ok to go home. As I wrote yesterday, she will be on a continuous drip for the next 6 months. We had a good conversation with the oncologist yesterday answering various questions. It looks like a jejunostomy (feeding tube into the intestines) could be on the table again a bit later. It depends on how things go and how long they anticipate her needing ongoing nutrition. It´s just a relief to finally get it started. Even though her weight is still an issue, she is stable and her bloodwork is good so they don´t want to delay any further.
4 June 2014 Slow start to the morning but by noon she had her NG tube going again, meds on schedule again, IV fluid and a new parenteral line since she has phlebitis in the first spot. We are now waiting to see the Oncologist who is swamped (the others are at a convention). We have heard nothing about a J-tube so we´re assuming that´s a moot point. Not sure why that GI Dr. came in and raised our hopes again. But now that she´s used to the NG tube and they´re about ready to start chemo it kind of seems pointless anyways. Bruce left at 5am for Canada and I´m at the hospital with Dani & Jenna. Hopefully, I can get home to be with Jordan this afternoon and help him study. He also has fútbol tryouts these days for next year and those are super important to him. He´s having a problem in one of his feet - mostly the heel - and it seems like growing pains that a lot of his friends have also suffered. We´re stretching, massaging with alcohol with rosemary and sometimes spraying it with a pain killer. Poor guy! Dani has back issues from dance & we need to get her to physical therapy. How can everyone be so needy at the same time??! The Oncologist finally came by around 6:30, answered our questions & later the chemo was set up: a bottle with a line to her port that will continuously drip for a week. We´ll change the bottle every week for the next 6 months. Relieved to finally have started this last portion of treatment.
3 June 2014 At the hospital today. Bruce leaves tomorrow for the rest of the month and we are all a bit sad and unsettled about this turn of events for Jenna. Plus Jordan is in his final stretch with final exams! Jenna got her new tube put in and we´ve talked to several Drs today but there is no news yet. Probably the chemo will start tomorrow. They´ve changed their strategy and will be using only 1 drug with the least amount of side effects (mostly thinking of nausea & vomiting). It will be put into her port (into a main artery) by continual drip and a bottle will be changed once a week. She´ll have this for 6 months. She should be feeling more perky tomorrow after being on nutrition & fluids here.
2 June 2014 Well, today was full of surprises. I took Jen to an oncology appt and apart from checking in with her and recognizing that things were not ideal but that she was stable, she told us they wanted to start chemo this week. WHAT?! We were surprised. But Jenna IS anxious to get going and it looks like it´s going to take a while for her body to adjust. So since they needed to replace her NG tube, they decided to admit her for 24-48 hrs to give her IV fluids, nutrition by vein and get the new tube in and give her that nutrition, too. I feel nervous because these bothersome symptoms have sabotaged her progress and I don´t feel like she´s very strong. But the Drs are probably right: she may not be very different from this for a while. (I still want to keep looking for options for the vomiting!) Jen had a 2-hr prayer session for her and we took her to the hospital after that. To our surprise, a GI Dr whom we had never met before came in and asked why they had never given her a J-tube (a feeding tube that goes into the intestines by way of the jejune). We had fought for this option long ago but were told it wasn´t an option for her. But this Dr wants to put it on the table again. Wow. We were really surprised. So we´ll have to see what happens with that.
1 June 2014 We are hopeful about seeing results of the 24-hour prayer chain. We know that God hears. We know that prayer changes things. I just want to see a change in my daughter! Last night I heard her throwing up in the middle of the night and I felt disappointed...I asked the Lord to protect me from demanding certain answers from Him but I confess, I REALLY want to see something happen to Jenna physically...I want to see the vomiting stop...I want to see her begin to eat again...I want to see her regain weight and strength...and mostly, I just want to get on with this so we can finish it! Is it wrong to ask for this? Why does He not seem to answer hundreds of people banging on heaven´s door about this? There ARE beautiful things happening in our family and Jenna HAS experienced and evidenced an amazing grace in these last few difficult weeks. I am thankful for that. Today, though, her NG tube got clogged and we could not get it clear. We tried a variety of things with all our strength and finally had to go to the ER. Unfortunately, they didn´t have the kind she needs on hand (!!!) and wanted to put her on IV fluids overnight. She opted for getting some fluids and then coming home. We´ll go back in tomorrow to get a new one put in. Jenna pulled it out herself at home and is certainly happy to be tubeless. She looks forward to sleeping on her right side tonight. :) She did throw up once, though, and threw up a pill which was a bit horrifying to us - because she hasn´t had a pill in weeks! She´s had everything in liquid through her tube! That means stuff is literally not digesting and just getting stuck in there! How gross is that? We definitely have some big questions for the Drs tomorrow. We need some answers!
31 May 2014 We are expectant today. Around 165 people are signed up to pray specifically during a half hour time slot, 263 said they are participating and many have written of their intention separately by email or on fb. Wow. We are more than honored. So far Jenna is about the same physically but is greatly encouraged emotionally & spiritually. Some friends came over to pray with us mid-morning and we were all touched. We pray that there can be a breakthrough today! In a little while we are taking her to be prayed for at a special event...you never know what a day can hold.
30 May 2014 Excited about tomorrow´s 24 hours of prayer for Jenna! We are overwhelmed at how many people are participating, giving us gifts of time, energy, sleep, compassion, etc. THANK YOU!! Jenna has been the same today; I hope tomorrow we will see some remarkable changes! Bruce and I got away to some special gardens for a few hours to pray, write, read, listen, reflect and it did us good. The girls have just left for a couple hours by the beach and Jordan is bummed because he has a game at the same time one of his best friends has a birthday party! It´s tough some days to be 13. On the other hand, Bruce has been so touched by Jenna´s good attitude in the midst of all this throwing up that he spontaneously bought her a gift at the gardens yesterday: a beautiful home fragrance of one of the famous flowers over there - glicinia (wisteria). It smells amazing & reminds me of her sweet fragrance - by Jesus´ grace - to us right now.
29 May 2014 Can´t say that Jenna is any different. She hasn´t been able to eat for close to a month now. She is feeling hunger and that´s a good first step, but she also needs to be able to hold food down! And assimilate the nutrients! It´s discouraging to not have good news for all the people who are always asking about her.
28 May 2014 The chicken stock hasn´t stayed down. :( She hasn´t tried anything else. When you´re nauseous & throwing up throughout the day, you don´t have much appetite or motivation to eat. She has a valiant attitude, though. At least she´s getting the liquid nutrition through her NG tube but it´s just not going to be enough for building her strength & weight. She was super encouraged by a special package received from friends and 3 friends who came to visit this afternoon - one surprised her completely as she´s been in Norway!
27 May 2014 At Jenna's request, I'm making organic chicken stock this morning! Hopefully, she will soon start eating again and dong ok with that. This week is important for us as a family as Bruce will be leaving Mon for a long trip and we are trying to take advantage of this time. Unfortunately, Jordan has a lot of homework, restarted an online English course we had taken a break from and 4 nights of fútbol (2 of regular training & 2 of tryouts for next year)! Dani is trying to organize some work for herself - teaching dance and English and we are starting to organize some things for Jordan´s summer.
26 May 2014 These days seem the same as far as Jenna's state. She throws up several times a day, is keeping the nutrition on 18 hours a day and getting about 1200 calories. So far she hasn't eaten - or wanted to - for a long time. But she did she say she dreamed about food last night and that's a good sign (she often dreams of food when hungry). She and Dani went walking this evening and hopefully that will generate some hunger for tomorrow!
25 May 2014 We are anxious to get through this down swing. I keep wondering when her body will adjust and stop this throwing up! It's hard when the clinical answers are not satisfying...3 different disciplines can only give half answers...sometimes life is that way. We don't usually live very well with an " I don't know." It was helpful today to talk to an Oncology nurse at church today and know that this happens all over the world. The good thing today was getting out as a family and walking by the beach. It was beautiful out and we enjoyed getting Jenna to her favorite place! In the evening we started watching some old family videos and the girls especially laughed their heads off!
24 May 2014 First day back at home. Jenna didn´t have a very good day; she threw up quite a number of times. She is keeping the nutrition on 18 hrs a day and giving her body a 6-hr break during the night. She hasn´t eaten any food for 3 weeks so it will be quite a process to start up again. Today she feels dehydrated; probably due to losing the IV fluids so she´s trying to compensate by shooting fluids into her tube. She doesn´t feel hunger now which she did before. Hopefully soon she will feel hungry since she won´t be getting the parenteral calories any more. We really need her to want to eat! It´s hard enough to eat in her condition post surgery but if she´s nauseous besides, that is really tough. It´s one of the reasons they keep putting off chemo. Jordan felt really sick to his stomach today and missed a fútbol game. :( Bruce and I got to go to some friends´ 2 daughters´ baptism today. It was a beautiful day and perfectly celebrated. So fun to get out and see some dear people. Dad made us a great asado and we had a precious family talk where Bruce shared about his week, God´s work in his heart and changes to extend his sabbatical at this time and have more time with us here. That meant so much to Jenna. Dani was going out for the night and that always does her good. Tonight the rest of us are watching the final of the European Champions League game where 2 Spanish teams are battling it out in Lisbon! What a great time in history to live in Spain and love fútbol!
23 May 2014 They are sending her home! Our doubts still stand but since nothing is changing, she may as well go home. The big difference will be that she won´t be getting the additional parenteral (by IV) nutrition or the hydration by IV. She will have to get all her nutrition through the NG tube and either start keeping fluids down or put them through her tube. It won´t be that easy. But it´s not a cake walk here, either. It took forever to get checked out. We had to wait til 2:30 for the Dr to come and give official word, her final report, prescriptions & Dr´s appt for next week. Then we had to check out and wait for some nutrition pack to take home with us since they disconnected all Jenna had going. We arrived home at 5pm. We sent Dani off at 1:30 to pick up Bruce at the airport and her brother from school, then we met up at home. Jenna wasn´t feeling great and after a long bath, went to bed. But we´re all so glad to be under one roof.
Still have some of the same questions. Sometimes the anti nausea stuff seems to work and sometimes it doesn´t. Jenna is keeping on the nutrition at least 10 hours a day and is moving up towards 1000 calories. She would have to keep her system moving continually with some things they´re giving her here; the Drs are in agreement that her slow system (from localized chemo) is a big factor in this problem. As well, they feel her body is still adjusting to the NG tube and her body is gagging on it, rejecting it and attempting to throw it up. None of these seem entirely satisfying to us but there seems nothing else left to do. Both the girls woke up today saying, ¨I am SO OVER this hospital.¨ There just seems to be a day when that happens and we all hit it today! I had a busy day and I am so thankful for Dani and for a couple friends who visited today. Also, the insurance came through on the car so Dani can now drive!
22 May 2014 Rough night with quite a bit of vomiting. Sometimes we're not sure how much of the anti nausea meds actually stay down. Yesterday after getting some meds she threw up 10 minutes later. How do you even know if she kept it down? Is she just having a good day or did the meds actually work?? The endocrinologist came by this afternoon and said she can go home tomorrow! Is it premature? Is she ready? Can she survive ok without the parenteral nutrition (by IV)? We are definitely sick of the hospital...do the Drs. just figure that psychologically she´s at a point where she´ll do better at home? Because I feel a bit insecure about the fact that they haven´t really figured out the vomiting thing, that she´s still vomiting a bit, that she hasn´t eaten anything by mouth for like 3 weeks and she´s expected to survive on 1200 calories at home...how is that supposed to work??!!
21 May 2014 Vomiting is down although not cured. She kept the nutrition on for the 10 hours. The Dr. said if she can get up to 1200 calories she can go home. Today she did 800 but tomorrow they'll increase hours and speed.
20 May 2014 A much better day. Thank God. She was able to keep the enteral nutrition on for 10 hours and only threw up one time. They seem to have finally found an anti-nausea med that actually works. Five little magical drops and she feels a lot better. It is very hard for her - and us - to see so many meds going into her body (for someone who barely takes anything for a headache) but it is just a season. There WILL BE another season. It was a busy day for me and I wasn´t at the hospital much; I´m so thankful for Dani and her help as Jenna´s right hand companion right now! Jordan hung out with Jen while I took Dani to her dance class and then the 3 of us went to the café of the hospital for a snack for Jordan before fútbol. Jenna said, ¨I almost feel like a real person!¨ Of course, she had an IV pole loaded down with stuff and slippers on...but I´m glad she could do something that made her feel ¨real¨ for a while!
18 May 2014 Took Bruce to the airport and then Jordan & I met with the girls at the hospital. It was such a great time to talk, read some Scriptures & pray. We were all blessed & relieved to have such a special time...As for Jenna, she left the NG nutrition (enteral) on for 7 hrs! That was great. She threw up a couple times today but overall much less than other days. We were glad to have a good day.
17 May 2014 She had the NG tube nutrition going for 4 hrs today. It´s not too many calories but the IV/port nutrition is about 1600. Today it wasn´t easy to get to the hospital as the nearby sports stadium is having a big outdoor event and streets were cut off. They are also playing loud music - not so cool for the patients at the hospital trying to rest! Dani came with us to Jordan´s game and we (Bruce & I) went back later in the afternoon to see Jen. Bruce leaves tomorrow for Istanbul. We had one of those difficult but productive conversations that sometimes come up in families...the emotions of our situation is wearing on us & putting pressure on other lingering issues. On the one hand I´m glad...but it´s never easy. In case you haven´t noticed, we´re not the perfect family. Gonna put this in the prayer requests! (Not to be perfect but to have grace to work out stuff.)
16 May 2014 The scan only showed that there is no occlusion in her intestines. They do, however, move super slow; it took 12 hours for the contrast agent to go through! The Drs continue to think that her slow system is the cause of the vomiting but I still don´t understand why it doesn´t stop! Even now that her system is completely clean, she´s still throwing up. So now they are also admitting that the NG tube makes some people throw up and that the body just has to get used to it. With that explanation I don´t understand why she was ok for 2 weeks with it and then suddenly started vomiting. To that they say it is probably a combination. So today the endocrinologist wanted to start her back on the nutrition by NG tube because it´s not good for her system not to be working (while in the hospital she´s been getting nutrition and water intravenously through her Port (into a main artery). She´s starting slow on the NG tube nutrition - and only 4 hrs a day for now to see how she does. She managed 4 hrs today but after throwing up several times, we finally turned it off. Hopefully, it will get better each day.
15 May 2014 Today was better, thank God. She didn´t throw up at all until the afternoon. She even managed to keep quite a bit of medicine (contrast agent) down that is for a special scan later on today. Perhaps the results of that will give some more insight into all of this. Tomorrow we´ll find out. Jenna enjoyed visits from a couple of friends today & we´re thankful for that.
14 May 2014 At 2am Jenna starting vomiting and couldn´t stop. Dani called the nurses and Jen actually threw up (out?) her NG tube! A bad night. One nurse said she has seen this before (a certain rejection of the NG tube) but that Jenna´s body has no choice but to accept the NG tube. They can´t do the 12-hr test today as instead they have to reinsert a NG tube in endoscopy, x-ray it to be sure it is positioned correctly and that takes time. She was still throwing up today though she consumes nothing but meds. It´s mostly saliva but it´s unclear how much medication she is losing. Unfortunately, a couple of the meds she needs do not come in IV form so instead of trying to swallow them, she puts them through the NG tube. But inevitably, about 10 min later, she throws up. It´s been a rather trying day. I am super thankful that Dani is here by her side; it´s been such a help & comfort to me. Bruce gets back this evening from his trip/retreat and Jordan gets back tomorrow around 6:30pm from his camping trip.
13 May 2014 Meds for anti nausea & to speed up her intestines have seemed to clean her out but not stop the vomiting. Tomorrow they plan on doing a special 12-hours scan where she drinks a liquid which is viewed after 6 and 12 hrs to see its progression in her system. The oncologists & endocrinologists have been attentive. She is still vomiting after every medication (which is being taken via her NG tube) and so its hard to know how much is actually staying down.
12 May 2014 We all keep wondering: what is so tiring about hanging out at a hospital?! We still have no good explanation for that! Today Jenna had a Cat scan of her abdomen which didn´t seem to reveal anything extraordinary. Several Drs seem to be in agreement that there is some kind of occlusion in her intestines making everything slow down and her body is rejecting anything new. The chemo wash she had at the time of her surgery makes the peritoneal cavity very sticky and apparently it is common for some of the intestinal wall to become blocked. While it wasn´t clearly seen in the Cat scan, they are still going on this theory having ruled out over saturation from nutrition or a GI virus. It´s possible they´ll do another kind of barium scan to see how things are actually going through. We´ll keep you posted. Several Drs came by over the course of the day - oncologists & endocrinologists. Perhaps today one of the GI surgeons will come by and have some more input. We are trying to be patient but I just want them to solve this so she can get on with getting stronger & gaining weight! The longer it takes to start chemo, the longer this road gets...and while of course, we´re not looking forward to chemo, we are looking forward to the end someday!
11 May 2014 Dani spent the night with Jen although we brought her home for a Mother´s Day lunch. I didn´t like being separated too much but at least we did something. Bruce made a great asado. ;) We all went to the hospital and spent the afternoon/evening there. Jenna continues to throw up any medicine taken by mouth. Even when she puts the medicine through her NG tube, she sometimes loses it. She´s on various meds & tomorrow (Mon) when the hospital is in full swing again, they´ll do some more tests to determine the cause(s) of all the vomiting. We´re happy that at least in the hospital she is staying hydrated & nourished. We were happy to have some visitors (thanks Alex & Amy & Laura!) and feel blessed to have so much support from around the world. Jordan is psyched about his school camping trip this week - he leaves tomorrow for 4 days. :) Today there was a marathon for women against cancer and several friends ran for Jenna. Wow!!
10 May 2014 Jenna was having a bad day again & couldn´t hold down even water. We went to the ER again and they checked her right in. They got hydration & anti nausea meds going right away and later when she was up in her room, the Dr. came by and then ordered some more things for her ¨intestinal transit¨ which is very slow (common after localized chemo like she had during her surgery). Hopefully it will help alleviate her system but no one is really sure about what´s going on.
9 May 2014 At least today we stayed out of the hospital! Somewhat better although it´s still been difficult for her to swallow liquids. We did reinitiate the nutrition, though. She is very weak from the lack of food & liquid but hopefully by tomorrow, her energy will be picking up. We got out to the country for a drive and sat by a river for a couple hours as a family this afternoon. So nice to get out! In the evening we watched a movie together AND saw Jenna on British tv! They showed her picture, told a bit of her story and prayed for her. How cool is that??
8 May 2014 Today she continued throwing up although somewhat less. She slept a long time and that was good. We went back to the hospital and saw her endocrinologist who thinks that since the nutrition has been stopped for almost 24 hrs and she is still throwing up that it is likely to be some kind of virus. Go figure! None of us have been sick but it is possible. Since she can´t even keep water down, the Dr. almost admitted her but in the end she had us get some anti-nausea med and a rehydrating liquid at the pharmacy. If she can´t keep that down, we have to go back to the hospital and have her admitted. Praying we don´t have to do that! Bruce got back around 7pm and I´m glad to have help with the transport for futbol and dance (Jordan and Dani) and some friends that are in town that we´d like to have come by. Really tired today but Jen seems a little bit better now so hopefully by tomorrow we can restart the nutrition - at half speed - and see how she does. This is a set-back for us but we will keep going by God´s grace.
7 May 2014 Well, today was a rough day. I guess some days are like that. Jenna started throwing up at 5am and when it didn´t stop we went to the ER. The weird thing was that she hadn´t eaten anything and she had never thrown up without eating in this whole time. 6 hours later we had seen a Dr., taken an x-ray to see if the tube had moved inside her, seen a GI surgeon who moved her NG tube around, took another x-ray, got her on an IV with liquid and anti-nausea meds - but she kept throwing up! Finally they turned off the nutrition, consulted with her endocrinologist by phone and their best guess was she over saturated and her body was saying enough! They said to eat nothing for 24 hrs, stay off the nutrition and only drink. We checked in with her oncologist at his request and went home, exhausted. How does waiting around a hospital tire you out so much? And why do things go wrong when Bruce leaves?!
6 May 2014 Listening to the girls laugh as Jenna designs Dani & a friend with henna does my soul good. :) The weather has been beautiful and I´m truly thankful for such a great spring this year. Jenna tries to get some sun each day on the porch as when she starts chemo she can´t be in the sun any longer. That will probably be the biggest sacrifice of the summer! Bruce left for 3 days of a personal retreat for his sabbatical & I´m happy for him that he can be in a quiet place (it´s not always very quiet around here!). Off to run Jordan to fútbol... / Escuchando a las chicas reirse mientras Jenna diseña a Dani y Raquel con henna me hace bien. :) El tiempo ha sido espectacular y estoy super agradecida por una primavera tan buena este año. Jenna intenta tomar un poco de sol en el porche porque cuando empiece la quimio ya no puede. Eso quizás será el sacrificio más grande del verano! Bruce se fue por 3 días de retiro personal para su sabático y estoy contenta que él puede estar en un lugar tranquilo (ya que no es tan tranquilo a veces por aquí!)
5 May 2014 I continue to wear a smile on my face with yesterday´s good news... :) SO thankful that this time with the tube has been SO much better and is now giving us results. Hooray!!! Today Bruce and I got out to lunch together in light of the fact that he is gone the next few days and next week in June begins a lot of travel. We are glad that things are manageable right now and today I realized that I´ve gone more than a week without a trip to the hospital!! (Except for today that Dani had to do some bloodwork. jaja. It always has to be someone!) / Yo sigo con una sonrisa en mi cara por las buenas noticias de ayer... :) TAN agradecida que esta vez con la sonda ha ido TAN mejor y que ahora nos está dando resultados. Hurra!!! Hoy con Bruce nos escapamos y salimos a almorzar juntos...como él va a estar viajando esta semana y la próxima algunos días y en junio ya empieza una época de muchos viajes. Estamos contentos que ahora la cosa está manejable y hoy me dí cuenta que ha pasado más de una semana desde que tuve que ir al hospital (excepto hoy que Dani tuvo que hacer una analítica. jaja. Si no es una es otra!)
4 May 2014 The greatest thing about today was that Jenna realized she has gained 2 kilos! That is awesome! We were all so happy with this news. :) Bruce, Jordan and I went to church in the am and Jordan went to spend the afternoon with a friend. When Dani finally returned from the retreat we had a great time regrouping, sharing about our weekend, having a cold drink out on the porch in the lovely Málaga evening and enjoying being together. / Lo más grande de hoy fue que Jenna se dió cuenta que había aumentado 2 kilos! Eso es estupendo! Estamos todos contentos con esta noticia. :) Bruce, Jordan y yo fuimos a la iglesia por la mañana y Jordan pasó la tarde con un amigo. Cuando volvió Dani del retiro tuvimos un tiempo lindo de compartir sobre el finde, tomar algo juntos en el porche en lo que era un hermoso atardecer Malagueño.
3 May 2014 Quiet morning for Jen as I went to a women´s retreat for a few hours and Bruce took Jordan to his fútbol match. We met up for lunch and later received some friends from N. Africa who left their 3 boys here with Jordan for the afternoon. Jenna ate ok but the good thing she mentioned today is that there are fewer esophageal spasms and that is great progress & news! She is feeling hungrier and that is good, too! She had a nice walk with her Dad by the beach late afternoon & it was beautiful out. / Mañana tranquila para Jen mientras yo fui a un retiro de mujeres para algunas horas y Bruce llevó a Jordan a su partido de fútbol. Nos unimos para el almuerzo y más tarde recibimos unos amigos del N. de Africa quien dejaron sus 3 niños aquí para la tarde con Jordan para la tarde. Jenna comió más o menos bien pero lo bueno es que mencionó que hay menos espasmos del esófago y eso es buen progreso y buenas noticias! Ella siente más hambre ahora y eso es buenísimo tambien! Ella tuvo un lindo paseo con su papá por el paseo marítimo esta tarde y fue una hermosa tarde.
2 May 2014 Thankfully, it was a better day for eating. The tube is working great & Jenna has a good attitude. Got her out for a walk at some Japanese gardens and a meaningful talk on a bench by a river...so blessed & thankful to be her Mom & to hear the things she´s learning. Since Dani isn´t here this weekend, I spent time with her in the afternoon watching a tv series about lawyers recorded by Uncle Ted. Glad I got to relax with her. Bruce painted the garage! :) / Agradecida por un día mejor en cuanto a comer. La sonda está funcionando bien y Jenna mantiene una buena actitud. Salimos para caminar en un jardín japonés y tuvimos una conversación significativa mientras sentábamos en un banco a lado de un río...tan bendecida y agradecida por ser su mamá y escuchar las cosas que está aprendiendo. Como Dani no está este finde, pasé tiempo con ella por la tarde mirando una serie sobre abogados grabado por Tio Ted. Agradecida que pude relajarme con ella. Bruce pintó el garaje! :)
1 May 2014 Can it really be May 1st?? Where has this year gone?! Today is Labor Day here and most everything is closed. I feel like I haven´t ¨worked¨ this year yet in some ways I´ve worked harder than ever before! Anyway, we all got to go to lunch at some friends´ house who are Algerian/Egyptian and they made wonderful couscous for us. Soooo happy that Jenna felt like going with us. Although she didn´t eat too much, being around Arabs is a treat for her and does her good. Jordan had a futbol game and Jen and I took Dani over to a retreat place where she´ll be helping out at a latina retreat our team has hosted for the last 4 yrs. Gonna miss being with them...The machine is working great & Jenna isn´t too bothered by it. / Puede ser que de verdad es el 1ero de Mayo?? Donde se ha ido este año?! Hoy es el Día de Trabajador aquí y casi todo está cerrado. Me siento como si no hubiera ¨trabajado¨ este año pero de algunas maneras he trabajado más que cualquier otro año! De todos modos, pudimos almorzar en la casa de algunos amigos quienes son Argelina/Egipcio y ella hizo un cuscús maravilloso para nosotros. Yo estaba taaaaaan feliz que Jenna quería ir con nosotros. Aunque no comió demasiado, estar con árabes es un lujo para ella y le hace bien. Jordan tenía un partido de fútbol y Jen y yo llevamos a Dani a un lugar de retiros donde va a estar ayudando en un retiro para latinas que nuestro equipo ha anfitriado ya por 4 años. Las voy a extrañar...La máquina anda genial y Jenna no está demasiada molesta.
30 April 2014 Fairly quiet day for Jenna. It´s not been as easy to eat as we thought. She feels somewhat nauseous at times and because her body is feeling pretty happy with the ¨easy¨ calories, she doesn´t get as hungry as before. Trying to adjust each day to this. She and I went to greet 2 women that arrived in Málaga today for a latina women´s retreat our team hosts each year and that was fun to get out together and sit & visit. I really appreciate them (one is a spiritual director & the other a psychologist) and was so glad to introduce Jenna to them. / Un día tranquilo para Jenna. No es tan fácil comer como habíamos pensado. Ella se siente a veces nauseosa y como su cuerpo está bastante contento con las calorías ¨fáciles¨, no tiene tanta hambre como antes. Está tratando de ajustarse a esto. Ella y yo fuimos a la casa de Laura para saludar a 2 mujeres que llegaron hoy a Málaga para un retiro para latinas que nuestro equipo organice todos los años y eso fue divertido poder salir juntas, sentarnos y visitar con otras. Yo las aprecio mucho (una es directora espiritual y la otra psicóloga) y estaba muy contenta poder presentarles a Jenna.
29 April 2014 I can´t believe that Jen was up for going to the beach with Dani & a friend! This shows she is getting used to her new look & feeling more confident about being in public. So glad. We are settling more into a routine this week after several weeks of stressful appointments, decisions, battles & paperwork. We are thankful for that right now. / No puedo creer que Jen quería ir a la playa con Dani y una amiga! Esto demuestra que se está acostumbrando a su nuevo ¨look¨ y que se siente más cómoda en público. Estoy contenta. Estamos asentándonos a una nueva rutina después de varias semanas de citas estresantes, decisiones, luchas y papeleo. Estamos muy agradecidos por eso ahora.
28 April 2014 The machine is humming along. Thankfully, Jenna is a good problem solver & has been able to fix any glitches so far with the machine & its tubes! We moved up to 2500 calories today & have realized she needs to begin to increase her activity level so that she will continue to be hungry. Her body has become used to limited calories & with this constant intake has felt satiated. Little by little her body should adjust. / La bomba está ¨zumbiendo¨. Gracias a Dios, Jenna resuelve bastante bien cualquier problema con la máquina y su tubería! Subimos las calorias a 2500 hoy y nos dimos cuenta que ella necesita incrementar su actividad para que tenga más hambre. Su cuerpo se ha ajustado a tan pocas calorias que con esta nutrición constante se ha sentido saciado. Poco a poco su cuerpo debería ajustarse.
27 April 2014 I have been so surprised at how different this time has been. I have been so pleased to see Jenna out on the porch each day (where neighbors can see her), out on the street with her siblings to play with a friendly cat yesterday and today we went to lunch at Claudia´s and she was up for going! So thankful. She´s doing great at running the machine, flushing out tubes and adapting her sleeping position to accommodate it. Hope we see lots of weight gain & a change in her energy levels soon! / He estado sorprendida por cuán diferente esta experiencia ha sido. Estoy muy contenta al ver a Jenna en el porche cada día (donde la pueden ver los vecinos), en la calle con sus hermanos ayer para jugar con un gatito y hoy fuimos a comer en la casa de Claudia y ella quería ir! Tan agradecida. Ella está manejando la bomba, limpiando los tubos y adaptando su posición de dormir para poder acomodarlo. Esperamos ver mucho aumento de peso y un cambio en su nivel de energía pronto!
26 April 2014 First 24 hours have been a success!. No problems with the pump and it´s humming is music to our ears - of calories! Jenna has already adapted a bag from India of hers to be a small carrying case for it and she is getting used to moving around the house with it & caring for it. We have no idea why this time is going so much better other then concerted prayer for her. So, THANK YOU! And THANK YOU, Jesus. / Las primers 24 horas han sido un éxito! No han habido problemas con la bomba y su zumbido ha sido como música para nosotros - de calorias! Jenna ya se ha adaptado un bolso de la India para poder llevarlo de un lado a otro. No tenemos ni idea porque esta vez ha sido más leve aparte de oración concentrada en esto. Así que, GRACIAS! Y GRACIAS, Jesús!
25 April 2014 After 5 hours at the hospital, Jenna came home with her new NG tube, the pump & other materials with it. It went A LOT better than last time and while she is bothered by it (sore throat & just getting used to moving around being attached to the machine), it is not nearly like the first one. This one is lighter weight & transparent. They´ve taped it to her with transparent tape & it doesn´t look bad. / Después de 5 horas en el hospital, Jenna vino a casa con su nueva sonda, la bomba & otros materiales. Fue MUCHO mejor que la última vez y aunque está molesta (le duele la garganta y es un lío acostumbrarse a estar atada a una máquina), no es como la otra. Esta es más liviana y transparente. Le han fijado la sonda con fiso transparente y no se ve tan mal.
24 April 2014 It´s been a lot of hassle to get this home nutrition worked out but we did it. Tomorrow at 9am Jenna will have the NG feeding tube placed and we will bring the equipment home and start pumping in those extra calories. Pray for strength! / Ha sido mucho lío arreglar todos los detalles para la nutrición domiciliaria pero lo logramos. Mañana a las 9 le van a poner a Jenna una sonda nasogástrica y traeremos todo el equipamiento a casa.
23 April 2014 Lots of hassles with working out this whole thing. Don´t need to go into all the details...anxious to get this taken care of! / Muchos problemas para arregular todo esto. No voy a entrar en detalles...ansiosa para empezar!
22 April 2014 Today Jen & I were at the hospital for a couple hours talking with the endocrinologist & being trained on the machine which will monitor the nutrition. It´s pretty simple. We are still waiting for final paperwork to be completed before the tube is placed in her and we´re good to go. She is definitely getting ¨unhappily resigned¨ to her upcoming reality. / Hoy con Jenna fuimos al hospital para algunas horas para hablar con la endocrina y recibir entrenamiento en como manejar la ¨bomba¨ que va a monitorear la nutrición. Es muy simple. Todavía estamos esperando papeles para poder ponerle la sonda y llevar todo a casa. Ella está ¨infelizmente resignada¨ a esta nueva realidad que viene.
21 April 2014 Met with the enodocrinologist to start moving on the NG tube. The details & paperwork have begun to be able to do this at home. Jenna is determined to gain weight - but she is NOT looking forward to this tube again! / Nos vimos con la endocrino para arreglar en cuanto a la sonda nasogástrica. Los detalles y papeleo han empezado para que podamos manejarlo aquí en casa. Jenna está determinado a ganar peso - pero NO le gusta la idea de la sonda!
20 April 2014 After some consideration we decided to take Jenna to the outdoor downtown Easter service. We had plans if we needed to leave early so that she could be a part of at least some of it. After our efforts, though, it was raining pretty hard and we only ended up driving to Málaga and back and holding our own family service at home. We had a nice Sunday lunch together and made it a special day. Nothing new as far as eating...there are still ups and downs. / Después de mucha consideración decidimos llevar a Jenna a un servicio del Día de Resurrección en el centro de Málaga al aire libre. Hicimos planes por si teníamos que salir antes para que ella pudiera aprovechar aunque un poquito. Pero al final, estaba lloviendo fuerte y sólo paseamos por la cuidad de Málaga e hicimos un culto familiar en casa. Compartimos un almuerzo especial juntos. Nada nuevo en cuanto a comer...todavía hay subidas y bajadas.
19 April 2014 The main thing that happened today for the whole family was Bruce & I taking Jordan and 4 of his friends to an amusement park for his birthday (this was what he had really wanted to do). It was a perfect day there without many people and so they rode the rides again & again without limit. It was a joy to watch them have so much fun, the highlight being 20 trips on the ¨Free Fall¨! Jenna & Dani stayed at home and did a lot of artwork & cooking together. / La cosa principal hoy para todos fue que con Bruce llevamos a Jordan y 4 amigos a un parque de atracciones para su crumple (esto es realmente lo que él quería). Fue un día perfecto sin mucha gente y montaban los juegos vez tras vez sin límite. Fue un gozo mirarles pasarlo tan bien y lo mejor fue 20 viajes en la ¨Caída Libre¨! Jenna y Dani se quedaron en casa e hicieron muchas cosas artísticas y cocinaron juntas. Un buen día para todos.
18 April 2014 The guys went on a hike and the girls went to the beach for a couple of house & we met back at the house for a late lunch & Turkish coffee (thank you, Jenna; you haven´t lost your touch!) Jen can´t be gone from the house for more than a couple hours since eating in public is somewhat stressful. :( But she had a great lunch. The new med (esophageal muscle relaxant) has brought some relief. No medical appts til Monday after this holiday week. / Los varones fueron a hacer una caminata/escalada y las chicas fuimos a la playa un par de horas y más tarde nos unimos en la casa para comer y tomar un café turco (gracias, Jenna; no has perdido tu toque!) Jen no puede estar fuera más de dos horas, pues comer en público es estresante. :( Pero comió bien al mediodía. La nueva medicación (relajante muscular para el esófago) le ha traído alivio. No tenemos más citas médicas hasta el lunes después de esta semana festiva.
17 April 2014 Enjoyed a pancake brunch made by Dad! Then we all had a relaxing day doing different things - gardening, reading, computer, talking, etc. The girls had some friends over in the afternoon & that was encouraging for them. Jordan & I started the Pink Panther together and later were joined by the whole family. Enjoying this long Easter weekend & getting geared up for the realities of next week with the NG tube... / Disfrutamos de un desayuno tarde de panqueques hechos por papá! Después todos hicimos distintas cosas - jardinería, lectura, guitarra, computadora, hablar, etc. Las chicas recibieron unas amigas por la tarde y eso les hizo bien. Con Jordan empezamos a mirar la peli Pantera Rosa juntos y al final se unió toda la familia. Estamos disfrutando este finde largo de Pascua y preparándonos mentalmente para las realidades de la semana que viene con la sonda NG...
16 April 2014 Dad made a great asado just for us. :) Unfortunately, Jenna couldn´t enjoy much of it. These last few days have been difficult for eating and she´s had a lot of trouble with esophageal spams. At 7pm we finally saw the GI Surgeon we had been waiting to see. The long and short of it is that Jenna´s case does NOT allow for a J-tube (there are lots of technical reasons for this but I won´t go into all of that). He explained it well so that we both understood that the only option for her for additional nutrition is the NG tube (nose). This was not the answer Jenna wanted but it has come down to this. This is a long holiday weekend so nothing will happen until Monday when we can see the Endocrinologist again. Lord, help Jenna to process this news... One good thing was we finally got a medication for the esophageal spams that have bothered her so much. / Papá hizo un buen asadao sólo para nosotros. :) Lamentablemente, Jenna no pudo disfrutar de mucho. Estos últimos días han sido difíciles en cuanto a comer porque ha tenido muchos problemas de espásmos del esófago. A las 19hs pudimos ver al cirujano digestivo. Para hacerlo corto, el caso de Jenna NO permite una yeyunostomía para nutrirla (hay muchas razones técnicas por esto pero no me da tiempo de explicarlo todo). Él lo explicó tan bien que las dos entendimos bien que la única opción para ella en cuanto a nutrición adicional es la sonda nasogástrica. Esto no fue la respuesta que Jenna quería pero es así. Ahora es un fin de semana festivo largo así que nada va a pasar hasta el lunes cuando veamos el Endocrino otra vez. Señor, ayuda a Jenna a asimilar esta noticia...Una cosa buena fue que por fin nos dieron una medicación para los espasmos del esófago que le han molestado tanto.
15 April 2014 Today we painted our living room and a lot of the stairwell and Jenna escaped to Ted & Claudia´s apartment to avoid the fumes. She enjoyed a quiet day over there although it wasn´t a good day for eating. Some friends came in the afternoon and Dani spent the night with her. / Hoy pintamos el salón y una gran parte de la escalera y Jenna se escapó al departamento de Ted y Claudia para evitar el olor tóxico. Ella disfrutó de un día tranquilo allí aunque no fue un buen día en cuanto a comer. Unos amigos vinieron por la tarde y Dani pasó la noche con ella.
14 April 2014 Today started off with Dani passing her Spanish Driver´s Test!!! This is a huge victory that perhaps only those of you who have lived in Europe can appreciate. She had already passed her theory before starting university and it expires in May so being able to pass it now was big. It will be such a big help to her and to us to have another driver. :) / Hoy empezó con Dani aprobando a su exámen práctica de conducir!!! Esto es una victoria muy grande que quizás sólo Uds que han vivido en Europa puedan apreciar. Ella ya había pasado la parte teórica antes de empezar la universidad y se vence en mayo así que poder pasarlo ahora fue muy importante. Será de mucha ayuda para ella poder moverse y para nosotros como familia tener a otro conductor. :)
13 April 2014 First time to all be in church together in a long time. Dani had been asked to do a dance at a local church and we all wanted to be able to see her. It was fun to surprise her by bringing Jenna (and I left early with her so that it wasn´t too much). We were all happy to watch Jenna eat quite a good lunch and in the afternoon she had a good walk with a friend by the beach. / Primera vez de estar todos juntos en una iglesia en mucho tiempo. Le habían pedido a Dani hacer un baile en una iglesia local y todos queríamos verla. Fue muy divertido poder sorprenderla trayendo a Jenna (y yo me fui pronto con ella para que no fuera demasiado). Estábamos contentos de mirar a Jenna comer un buen almuerzo y por la tarde caminó un rato por la playa con una amiga.
12 April 2014 Jenna had a full day! Bruce and I went to Jordan´s game which was a great win while Dani practiced a dance she´s presenting tomorrow in church and Jen finished a dessert for our team Easter celebration today. We all had a wonderful Easter lunch with our other 4 families (except for Ted who just flew to the US to be with his Mom) and Jenna decided a buffet is a great way to eat! If one thing doesn´t set well, you try something else! She is always nervous about eating around people so today was a success. :) She left early to rest and the rest of us talked, painted Easter eggs, the kids had an egg hunt, etc. Later, 4 friends of Jenna´s, all leaders among the youth here in Málaga, came to visit and enjoyed talking, eating, singing and they even helped us move some furniture. :) A wonderful day. Even now while I write this, the tears fall because I can hear the guitar downstairs and the voices of these young people praying and crying out for the life of my daughter. We are most blessed... / Jenna tuvo un día llenísimo! Bruce y yo fuimos al partido de Jordan - y ellos ganaron que fue genial. Dani se quedó practicando un baile para presentar mañana en la iglesia y Jen estaba terminando un postre para la celebración de Pascua de nuestro equipo hoy. Tuvimos un hermoso almuerzo con las otras 4 familias (menos a Ted quien viajó a los EEUU para estar con su mamá) y Jenna decidió que un buffet es una manera perfecta para comer! Si una cosa no le sienta bien, te sirves otra cosa! Ella está nerviosa en cuanto a comer delante de otras personas así que hoy fue un éxito. :) Ella se fue pronto para descansar y los demás nos quedamos hablando, pintando huevos de Pascua, los niños tuvieron una búsqueda de huevos, etc. Más tarde, 4 amigos de Jenna, todo líderes entre los jóvenes aquí en Málaga, vinieron a visitarla y disfrutaron mucho de hablar, comer, cantar y hasta nos ayudaron a mover unos muebles. :) Un día maravilloso. Mientras escribo esto ahora, me caen las lágrimas porque escucho la guitarra y esos jóvenes orando y clamando por la vida de mi hija. Estamos más que bendecidos...
11 April 2014 Bruce returned from a 2-wk trip and that was a relief! Since Jordan´s birthday is tomorrow, his classmates & us were able to pull off a surprise party for him and it was great! He hadn´t suspected anything and he was really touched to see 15 of his close friends at the churrería. We pretended we were going as a family since Dad had just gotten back but when he walked in they all yelled, sang, then embraced him. It was so fun! We also surprised him with the BMX bike he had been yearning for. After eating, we all went to a nearby field where they rode bikes, played fútbol and messed around for a couple of hours. Bruce & I got time to talk as they played while the girls went back home to finish a cake they were making for him. You can see that in BLESSINGS. It was so satisfying to give him joy in the midst of a difficult year. / Bruce volvió de un viaje de 2 semanas y eso fue un alivio! Como el cumple de Jordan es mañana, sus compañeros y nosotros pudimos armar una fiesta sorpresa para él y fue genial! Él no había sospechado nada y fue super tocado al ver a 15 de sus amigos cercanos en la churrería. Nosotros fingimos que ibamos a tomar churros como familia como papá recién había llegado pero cuando él entró, todos gritaron, le cantaron y después le abrazaron. Fue tan divertido! Nosotros también le sorprendimos con una bici BMX que él había estado anhelando. Después de comer, todos fuimos al campo donde ellos anduvieron en bici, jugaron a la pelota e hicieron un poco de todo por un par de horas. Bruce y yo tuvimos algo de tiempo para charlar y tomar mate mientras ellos jugaban y las nenas volvieron a casa donde terminaban una tarta que estaban haciéndole. Puedes ver eso en BLESSINGS. Era tan satisfactorio darle alegría en medio de un año dificíl. :)
7,8,9, 10 April 2014 Haven´t written this week...am exhausted and busy with so many details of life. Really need Bruce back and find myself praying he will bring back peace and blessing from his days of sabbatical in Turkey and Cyprus. He even spent 3 days in silence & solitude at a retreat center & we have had no contact during that time. It´s not easy trying to enter into each other´s world right now...we are each living such different things...two different worlds really. Mine is a fierce battle and his is quiet & spiritually focused all the time. I am so happy for him...but jealous at the same time! Sometimes I yearn for the possibility of changing places...We have had medical things up in the air and I have been 4 days in a row to the hospital. The first 3 days were trying to figure out how the Drs want to proceed with any additional nutrition - if a J-tube is possible or if we have to subject Jenna again to the NG tube (nose). We are really feeling bounced around between disciplines - GI, Endocrine/Nutrition and Oncology. There are things they must decide on together. We also don´t have a way to contact the Drs other than to physically go over there, so thus, the 4 trips this week. The 4th day was specifically for blood work and for an appointment with a GI surgeon re: the J-tube. The result of all of this was a lot of tension, need for perseverance and insistence on a decision. The clock is ticking. In the end, there will be a decisive, inter-disciplinary meeting on Tuesday (4.15) in which the 3 specialties will decide on the best course of action for Jenna´s ongoing nutritional support and we will find out on Wednesday (4.16). We have been waiting for this for weeks now and hope that something will relieve the pressure that´s on Jenna right now to consume all her calories by mouth. / No he escrito esta semana...estoy agotada y ocupada con tantos detalles de la vida. Necesito que vuelva Bruce y me doy cuenta que oro que él traiga paz y bendición de sus días de sabático en Turquía y Chipré. Hasta pasó 3 días en silencio y soledad en un lugar de retiro y no hemos tenido ningun contacto en ese tiempo. No es fácil entrar en la vida del otro ahora...estamos viviendo cosas tan diferentes...2 mundos distintos realmente. La mía es una batalla dura y la de él es tranquilo y enfocado en lo espiritual todo el tiempo. Yo estoy tan contenta por él...pero celosa a la vez! A veces anhelo la posibilidad de cambiar de lugar...Hemos tenido cosas médicas en el aire y yo he ido 4 días seguidos al hospital. Los primeros 3 días intentamos entender como querían los médicos proceder con nutrición adicional - si una yeyunostomía es possible o si Jenna tiene que someterse a la sonda NG. Estamos sintiendo como palomitas...siendo rebotados por todos lados - entre Digestivos, Endocrinos/nutricionistas y Oncólogos. Hay cosas que ellos se tienen que decidir juntos. No tenemos otra manera de comunicarnos con los médicos aparte de irnos para allá, así que eso es la razón para los 4 viajes esta semana. El cuarto viaje fue para una analítica y una cita con el cirujano digestivo en cuanto al yeyunostomía. El resultado de todo esto fue mucha tensión, la necesidad de perseverar y una insistencia en una decisión. El reloj sigue dando vueltas. Al final, va a ver una reunión decisiva el martes (15.4) en lo cual las 3 disciplinas se decidirán lo que es mejor para Jenna en cuanto a la nutricióna adicional y nosotros nos enteramos de ello el miércoles (16.4). Hemos estado esperando esto por semanas y esperamos que algo aliviará la presión que hay sobre Jenna ahora para consumir todas sus calorías por boca.
6 April 2014 Quiet day. Daniela is off with a friend, Jordan & I went to church for the first part and then came back to receive a guest - an Egyptian woman who has a healing prayer ministry - and who came to pray for Jen. After lunch we went down to the beach and Jenna really enjoyed that. Beautiful day. Some friends came and joined us and that was great for Jordan who played hard with his long time friend Ale. / Día tranquilo. Daniela está con una amiga, Jordan y yo fuimos a la iglesia por la primera parte y después volvimos para recibir una visita - una mujer egipciana quien tiene un ministerio de sanidad - y quien vino a orar por Jen. Después de almorzar fuimos a la playa y Jenna la disfrutó mucho. Hermoso día. Algunos amigos vinieron y se unieron a nosotros y fue muy bueno para Jordan quien jugó fuerte con su amigo de toda la vida Ale.
5 April 2014 Trying to rest up for this coming week, praying, enjoyed Jordan´s fútbol game & a friend of his visiting from Morocco...preparing food & things for next week. / Tratando de descansar para esta semana que viene, orando, disfrutando del partido de fútbol de Jordan y un amigo de él visitant de Marruecos....preparando comida y cosas para la semana que viene.
4 April 2014 Have had a big week of lovely guests (they figure under BLESSINGS) who have brought encouragement, distraction & BIG LOVE. We may be weary in body but we are filled up in a lot of ways emotionally! Meanwhile, we continue to walk through each day, still struggling with questions and much waiting....always waiting... / Hemos tenido una gran semana con hermosas visitas (ellos figuran bajo BLESSINGS) quienes han traído ánimo, distracción y MUCHO AMOR. Puede que estemos cansados en cuerpo pero estamos llenos emocionalmente de muchas maneras! Mientras, continuamos caminando cada día, todavía luchando con preguntas y mucha espera...siempre esperando...
3 April 2014 Trying to meet each day calmly with peace as we struggle through options, questions, answers we like or don´t like, and eating, calories, eating, calories, success and lack of it day in and day out. Miraculously, in spite of how little she is eating & keeping down, she is hanging onto her weight and NOT losing! So we are thankful for that. But we WOULD like it to go UP and for her to enjoy INCREASED ENERGY and LIFE. / Tratando de saludar a cada día tranquilamente y con paz mientras luchamos con opciones, preguntas, respuestas que no gustan o q no, y comiendo, calorías, comiendo, calorías, éxito y falta de éxito todos los días. Milagrosamente, a pesar de cúan poco está comiendo y bajando, se está manteniendo su peso y NO perdiéndolo! Así que estamos agradecidos por eso. Pero NOS GUSTARIA que subiera y que ella pueda disfrutar de MÁS ENERGÍA y VIDA.
2 April 2014 Met with Jen's Oncologist today who had spoken with the Endocrinologist about the nutritional issues. He is a very kind man and we are glad to have him on our side. Today he told us, ¨You are the kind of people I wish I had met outside the hospital.¨ He also said Jenna always looks so good (beautiful) and that she has ¨a pure countenance¨. What beautiful words! While he is eager to do his part of the job - the chemo - he is mostly concerned that Jenna be in a better place physically & mentally. We still don´t have an answer from the GI surgeons about the possible option of an abdominal feeding tube (J-tube) during this time, but we feel relieved that we have a couple more weeks to work on gaining strength & continuing to resolve & fine tune some of the nutritional challenges. / Nos vimos con el Oncólogo hoy quien había hablado con el Endocrinólogo sobre los temas nutricionales. Es un hombre super amable y estamos contentos de tenerlos de nuestro lado. Hoy nos dijo que ¨Somos el tipo de personas que a él le gustaría haber conocido fuera del hospital.¨ También dijo que Jenna siempre se ve guapa y que ¨tiene una mirada pura.¨ Que bonito! Realmente, él quiere ganar esta batalla con nosotros. Él está ansioso para hacer su parte - la quimio - más que todo está interesado que Jenna esté en mejor posición fisicamente e mentalmente. Todavía no tenemos respuesta de los cirujanos digestivos de una posible opción de una sonda de nutrición en el abdomen (Yeyunostomía) durante un período de tiempo, nos sentimos aliviados que tenemos un par de semanas más para ganar fuerzas y continuar resolviendo los desafíos nutricionales.
1 April 2014 Spent the day with a beautiful guest from France who spent 24 hours with us to bring refreshment and encouragement - Sandra. She is the Mom that Jenna nannied for during her year in France. You can read more under Blessings. We tried not to think too much about medical stuff! / Pasamos el día con una visita hermosa de Francia quien pasó 24 horas con nosotros para resfrescarnos y traer ánimo - Sandra. Ella es la mamá de los 5 (ahora 6!) niños a quien Jenna cuidó durante su año en Francia. Puedes leer más en Blessings. Intentamos no pensar demasiado en las cosas médicas!
31 March 2014 The endocrinologists agree that TPN at home DURING CHEMO is not an option. Too much risk of infection with the low defenses. So we are trying to assimilate the possible need to return to the NG tube for a time and also conferring with the GI surgeons to see if her abdomen is ready yet for a feeding tube into her small intestine as another possible option. At least we really liked this endocrinologist... / Los endocrinos están de acuerdo que Nutrición Parenteral en casa DURANTE LA QUIMIO no es una opción. Hay demasiado riesgo de infecciones con las defensas bajas. Así que estamos tratando de asimilar la posibilidad de volver a la sonda NG para un tiempo y también consultar con los cirujanos digestivos para ver si su abdómen está lista para un tubo de nutrición como otra opción. Por lo menos nos gustó este endocrino...
30 March 2014 Just chilling on this Sunday, getting ready for the fight this week. / Quedándonos tranquilos este domingo, preparándonos para la lucha de esta semana.
29 March 2014 Thankful for some energy to do some necessary cleaning. Starting to get the itch to clean everything before Jenna´s chemo. Don´t want to be paranoid, just prepared. And let´s face it, the house has NOT exactly been a priority lately! Jenna continues to struggle to eat...sometimes she is so very hungry...and just can´t keep it down. It´s so hard to watch; sometimes I think I can´t take it anymore. / Agradecida por un poco de energía para hacer un poco de limpieza necesaria. Tengo muchas ganas a limpiar todo antes de la quimio de Jenna. No quiero ser paranoica, sólo preparada. Siendo honesta, la casa NO ha sido mi prioridad ultimamente y le hace mucha falta! Jenna sigue luchando para comer...a veces tiene tanta hambre...y devuelve la comida. Es tan difícil mirar esto; a veces pienso que ya no aguanto más.
28 March 28, 2014 Through various contacts I was able to talk to a GI surgeon from another hospital who was more open to all my ideas. Also a nurse who is in the public system who gave me the low down on TPN at home. I just don´t get why everyone is so hyper vigilant about infection! I see great importance in getting trained, in having constant contact with professionals (daily if necessary), of hygiene in the home, etc. etc. but what choices do we have? We can´t keep her in the hospital for the next 5 months so she can get it! And she can´t keep losing weight and strength. She already has so little strength...I have NO IDEA how she´s supposed to make it through chemo...In the end, I got 2 appointments for Mon with 2 other endocrinologists; hopefully, someone will have some new idea or some flexibility... / Por medio de varios contactos pude hablar con un cirujano digestivo de otro hospital que estuvo más abierto a nuestras ideas. También con una enfermera quien está dentro del sistema público y me informó sobre el uso de NPV domiciliaria. No entiendo porque todos están tan hiper vigilante por el tema de infección! Yo veo la gran importancia de recibir capacitación, de tener contacto constante con professionales (si es necesario, todos los días), de la higiene en la casa, etc. etc. pero que opciones tenemos?? No podemos mantenerla ingresada por 5 meses para poder recibirla! Y no puede seguir perdiendo peso y fuerza. Ella ya tiene muy poca fuerza...Yo NO TENGO IDEA de como se supone que va a sobrevivir la quimio...Al final, hice 2 citas para el lunes con 2 otros endocrinos; esperemos que alguno tenga alguna otra idea o algo de flexibilidad...
27 March 2014 TERRIBLE DAY. Had a meeting with the oncologist to go over details about chemo. I had to remind myself to breathe as we talked about side effects...the BIG ONE being the possibility of infertility. It was a difficult afternoon processing that one and wondering if she should freeze some eggs...what would that mean?....is there time?...if she can´t carry a baby would she be willing to have a surrogate mother carry it? (Daniela volunteered.) In my head I was screaming: I CAN´T BELIEVE WE´RE HAVING THIS CONVERSATION!! Later in the afternoon we went to talk to the endocrinologist and to propose TPN (Total Parental Nutrition) thru a main artery at home to support Jenna´s calorie intake. We know this is done in the US and in Spain. But she said an emphatic NO. It is way too dangerous and risky as far as infection. She would not budge. We were stunned & more than disappointed! How much weight will they let her lose before it could be an option??? (She´s lost another kilo since getting home on Monday.) I was furious. I CAN´T BELIEVE THESE PEOPLE! CAN´T THEY SEE SHE NEEDS EXTRA SUPPORT?? If she keeps losing weight now how will she make it through chemo??!! After a good long cry I resolved to get on the phone tomorrow and find some other opinions! / DÍA TERRIBLE. Tuvimos una cita con una oncóloga para revisar los detalles en cuanto a la quimio. Tuve que acordarme a respirar mientras hablamos de todos los efectos secundarios...el MÁS GRANDE siendo la posibilidad de la infertilidad. Fue una tarde difícil asimilando eso y preguntándonos si debería congelar unos huevos...qúe significaría eso?....hay tiempo?... si ella no pudiera tenerle al bebé, estaría dispuesta que otra lo hiciera? (Daniela se ofreció.) Dentro de mi cabeza yo estaba gritando; NO PUEDO CREER QUE ESTAMOS TENIENDO ESTA CONVERSACIÓN!!! Más tarde fuimos a hablar con la endocrina y proponer NPV (Nutrición Parenteral por Vena) por via central en casa para apoyar la nutrición y número de calorías de Jenna. Sabemos que se hace esto en USA y España. Pero ella nos dió un rotundo NO. Es demasiado riesgo y muy peligroso en cuanto a infección. Ella no lo consideró. Nosotras estábamos sin palabras. Cúanto peso tiene que perder antes que nos den otra opción?? (Ya ha perdido otro kilo desde que volvió a casa.) Yo estaba furiosa. NO PUEDO CREER ESTA GENTE!! NO PUEDEN VER QUE ELLA NECESITA APOYO ADICIONAL?? Si sigue perdiendo peso ahora como va a poder con la quimio encima? Despúes de llorar un tiempo, resolví ponerme en el teléfono mañana y encontrar otra opinión!
25-26 March 2014 At home struggling to get calories in. It´s so hard; she can only eat so little at a time. Bruce is getting ready for a 2-week trip...I can see his uncertainty, feel the stress in all of us as we struggle to communicate and have some semblance of real life amidst this...We bless him to go, want him to go, but miss his steady, solid nature as we walk into chemo. / En casa luchando para consumir calorías. Es muy difícil; ella puede comer tan poquito a la vez. Bruce se está preparando para un viaje de 2 semanas...puedo ver su incertidumbre, sentir el estrés en todos nosotros mientras luchamos por comunicar y tener alguna vida normal en medio de todo esto...Lo bendecimos para ir, queremos que pueda viajar, pero vamos a extrañar su temperamento firmey constante mientras se acerca lo de la quimio.
24 March 2014 HOME AGAIN! About midday the endocrinologist gave Jen the OK to go home. She & the oncologist think it´s important for her to have a week at home to relax, be with family, eat and get ready for chemo (starting next Wed, April 2nd). We´re very glad to all be in one place again! But still a bit nervous about the whole eating thing... / EN CASA DE NUEVO!! Al mediodía la endocrina le dió a Jen el Ok para irse a casa. Ella y el oncólogo piensan que es importante para ella tener una semana en casa para relajarse, estar con su familia, comer y prepararse para la quimio (que empieza el miercoles q viene, el 2 Abril). Estamos contentos de poder estar todos juntos en un sólo lugar otra vez!
22-23 March 2014 Weekend was fairly good & quiet. There has been no vomiting for a number of days. Still not sure how Jen will be able to eat more than about 1,000 calories a day since that´s about her personal best (although we probably are not all that accurate, though!). Good times with siblings & visitors. Jenna even made some jewelry today - her first artsy thing in a while! / El finde estuvo bastante bien y tranquilo. No ha habido vómito por varios días. No estoy segura como Jen va a poder comer más de 1,000 calorías por día porque su mejor día fue de unas 1,200 calorías (aunque no estamos seguros del todo de su precisión). Buenos tiempos con sus hermanos y visitas. Jenna hizo unos pendientes hoy - su primer intento en mucho tiempo en cúanto a algo artístico!
21 March 2014 Today has been a surprisingly, suddenly good day for eating. Yahoooo! Jen has eaten a lot more - and kept it down! We think Dani brought lots of blessing with her! Since she is still not eating enough calories on her own yet, though, she will be in the hospital until Monday. / Hoy ha sido un día sorprendente y arrepentinamente bueno para comer. Yahoooo! Jen ha comido mucho más - y le ha bajado bien! Pensamos que Dani ha traído much bendición consigo misma! Como todavía no come lo suficiente en calorías por boca, se va a quedar en el hospital hasta el lunes.
20 March 2014 Having one of those days when the hard reality is hitting and is very real...eating is so difficult and anxiety producing, Jenna is weary of it all. She is eating what she can but it is still so little we don´t know how it´s all gonna go down... Good thing Dani arrives tonight from the US with all her energy & joy!! / Estamos en uno de esos días cuando la realidad cruda nos está golpeando y está muy real...comer es tan difícil y produce mucha ansiedad; Jenna está agotada de todo esto. Ella está comiendo lo que pueda pero no estamos seguros de como va a salir todo esto...Menos mal que llega Dani esta noche de USA con toda su energía y gozo!!
19 March 2014 Unfortunately, the Port-a-Cath got slightly out of place and caused a lot of swelling in the area. It had to be drained & cleaned and reset a bit. Now we can´t use it for nutrition until tomorrow when all the inflammation is completely down! Still struggling a lot to eat and we feel discouraged about how difficult this process is and how things are going to go when we´re at home and she has to ingest everything by mouth. The oncologist doesn´t really want to use the Port in an ongoing way for nutrition since he wants to keep it clean for chemo. Jenna hasn´t gained any weight since we´ve been here at this point. We need a breakthrough!! / Desafortunadamente, el Port se salió de su sitio un poco y causó mucha inflamación en la zona. Tenían que drenarlo y limpiarlo y ponerlo en su sitio. Ahora no lo podemes usar para nutrición hasta mañana cuando se baja toda la inflamación! Está luchando para comer y sentimos desanimados por lo difícil que es este proceso y como van a salir las cosas cuando estamos en casa y ella tine que ingerir todo pro boca otra vez. El oncólogo no mucho quire utilizar el Port siempre para nutrición para que se quede limpio para la quimio. Jenna no ha aumentado de peso hasta ahora. Necesitamos un avance urgente!!
18 March 2014 pm Got the Port-a-Cath put in this afternoon under local anesthesia. ¨Not too bad!¨ Jenna said. It´ll be 24 hrs before it can be used but they´ll pump her with 2500 calories until she goes home (probably Friday)...then she´ll have to take in everything by mouth. They took out her 5th IV as she got phlebitis in it, too. What a relief! We are praying the 2 meds she has begun will help her keep food down & that this Port will give her a boost in calories in the next 2 days. / Le pusieron el port-a-cat esta tarde bajo anestesia local. ¨No fue tan mal!¨ dijo Jenna. Van a ser 24 horas hasta que se pueda usar pero después le pueden meter unas 2500 calorias por día hasta que vaya a casa (probablemente el viernes)...a partir de allí todo tendrá que ser por boca. Le quitaron su 5ta vía porque tenía flebitis también. Que alivio! Estamos orando que los 2 medicamentos que ha empezado a tomar podrán ayudarle a bajar la comida y que este reservorio le pueda dar un empujón de calorías en los próximos 2 días.
18 March 2014 This afternoon Jenna will have a Port-a-Cath or a Port for Chemo put in her chest under the skin. This will be done under local anesthesia. This will enable her to receive chemo or some nutrition through a main artery. She has to be on a 6-hr fast beforehand so there´s not much struggle to eat going on! The endocrinologist evaluated my recipe for homemade protein smoothies and found it to be richer in nutrients and have 200 calories more than the bottled ones she wants Jen to drink! So we have the ok to bring those from home instead of the other ones!! ;) / Esta tarde le van a poner un reservorio para la quimio o port-a-cat en su pecho debajo de la piel. Esto se hace bajo anestesia local. Esto facilitará que reciba quimio o algo de nutrición por una vía central. Ella tiene que estar en ayunas por 6 horas antes, así que no hay mucha lucha hoy para poder comer! La endocrina evaluó mi receta para los batidos caseros de proteína que le hago y lo encontró más rica en nutrientes que el otro y tiene además 200 calorias más! Así que tenemos el ok de traerle desde casa sus batidos!! :)
17 March 2014 Today I´m basically having a let down and exhaustion has kept me at home. Bruce took his computer and went to hang with her and I´ll go in later. I hope he can meet her endocrinologist as well as get more of a feel for what it´s like there all day. ;) They told me that they started her on another med for keeping her intestines going. She has eaten a little bit today. Yesterday they have her scheduled for a port or ¨port-a-cath¨ on her chest under the skin for the upcoming chemo and for receiving some nutrition... / Hoy basicamente estoy echando un suspiro y un agotamiento me ha dejado en casa. Bruce se llevó su compu y fue a acompañarle a ella. Espero que él puede conocer algunos médicos y tener un sentir de que pass allí todos los días. :) Me contaron que hoy empezaron con otro medicamento para ayudar a los intestinos. Ha podido comer poco pero algo. Mañana le han citado para ponerle el reservorio en el pecho debajo de la piel para la quimio y para también recibir algo de nutrición...
16 March 2014 Had a good talk with a GI Dr. about her reflux and esophagus, nutrition, J tube, etc.; he was helpful and unrushed. She is to continue with the reflux med and let it build up in her system, focus on olive oil and if she can get them down, the protein shakes (they are nasty & artificial!). If by Mon the reflux med isn´t doing much they may try an endoscopy. She actually held down a bit of food today but the experience with the med was about 50-50. It´s exhausting and exasperating to focus on food all the time and every little detail of it...we´re going crazzzzzzzy!!!! We are also out of veins for the nutrition; she´s on her 4th IV site in 2 days. Tomorrow they may have to go to a main artery if she´s to continue having some kind of nutritional support while we resolve her issues. / Tuvimos una buena conversación con un cirujano digestivo sobre el reflujo y el esófago, nutrición, yeyunostomía, etc.; él nos fue de ayuda y no tenía apuro. Jenna debería continuar con el medicamento para el reflujo y dejarlo acumular en su sistema, enfocarse en el aceite de oliva y si puede, los batidos protéicos (son asquerosos y artificiales!). Si para el lunes no hay cambios, probablemente le harán una endoscopia. Ella pudo bajar algo de comida hoy pero la experiencia con el medicamento fue 50-50. Es agotador y exasperante enfocarnos en la comida todo el tiempo y cada detalle....nos estamos volviendo locoooos! Tambien ya no nos quedan venas para la nutrición; está en su 4to sitio en 2 días. Mañana puede que tengan que buscar una vía central para poder seguir recibiendo el apoyo nutritional mientras resolvamos sus temas.
15 March 2014 A GI Dr and the endocrinologist came by with the results of the radiology test; her intestines are really slow (probably due to the localized chemo) but that there are no blockages throughout her system. There is reflux right where she complains about pain in her chest so we are trying a med for that for a few days. An endoscopy may be needed to see what the muscles in the esophagus are doing to see if anything further needs to be done about those spams. Throughout this day, the med didn´t make much difference - she got it down once (not an easy job as a thick, licorice flavored substance) but lost her meal anyways and the 2nd time she threw the medicine up. We´ll see how tomorrow goes. She had a lot of visitors today so being tired doesn´t help to eat but it does help her psychologically! her brother spent the night with her. :) /
14 March 2014 The GI Drs came by and told us the news that a J tube (a feeding tube direct to the small intestine with a port on her belly which can be hooked up at night) is NOT an option for her. This is not good. It means that all her nutrition has to be by mouth - and we have already been trying that for weeks and haven´t been able to! The endocrinologist insists on protein shakes and olive oil (on anything she eats and just taking it by the spoonful. They are also trying to resolve the issues she has with vomiting as she hasn´t been able to keep anything down. Today she went to radiology for 4 hours to drink barium and have its entire transit through her system watched. In the meanwhile she is on IV nutrition but it can´t be an option for very long...the veins can´t take it. And by that evening, sure enough, she had developed phlebitis in the first IV site (inflammation of the vein evidenced by pain, redness at the site, low grade fever, etc.). They had to change to the other arm and that was an ordeal as its getting harder to get into her fine veins. The great thing today was that Dad returned from his trip! Were we ever glad to see him!!! / Los cirujanos digestivos pasaron y nos dijeron que el J tubo (una sonda de nutrición directo al intestino con una puerta en la barriga) NO es una opción para ella. Eso no es bueno. Significa que toda su nutrición tiene que ser por boca - y ya hemos estado intentando por semanas y no hemos podido! La endocrina insists en los batidos protéicos y el aceite de oliva (sobre lo que sea o pos si sólo). Están tambien intentando resolver los temas de los vómitos porque no ha podido bajar casi nada. Hoy se fue a radiología 4 horas para tomar sulfato de bario y mirar por la máquina como hace su tránsito. Mientras está recibiendo nutrición por vena pero no puede ser una opción por mucho tiempo...las venas no aguantan. Y justamente, para esa misma tarde, ya tenía flebitis en el sitio de la primera vía (inflamación de la vena que se evidencia en dolor, piel roja, fiebre, etc.) Tenían que cambiar de brazo y eso fue un lío por sus venas finas. Lo bueno de hoy es que vino papá!! Que alegría y alivio verle!!
13 March 2014 Terrible day! The tube was blocked at 4am and the nurses tried for an hour to unblock it in vain. They finally turned it off. When I got there at 8:30 nothing was resolved and it stayed that way most of the day. Can you believe this?! A series of logistical, technological & communication mishaps...more than 12 hours without any nutrition. She weighs the same now as Monday when we got here! I was advocating (Spanish style!) and had to become a Mama Bear to get anything to happen. Jenna was fed up with the NG tube which had hardly functioned 2 of the 4 days we´ve been here. They wanted to change the tube and put another (bigger!) one in tomorrow. NO WAY, JOSE!! We are done with that!!! Had the Big Talk with the endocrinologist and told her we need to look at other options. Not too easy. Sometimes we are unsure of what is cultural, what is the medical world, what is our personal philosophy, etc. But in the end, the tube is out, she´s getting nutrition intravenously and tomorrow is a new day. / Día terrible! El tubo fue obstruido a las 4am y las enfermeras intentaron por una hora a desbloquearlo sin éxito. Al final lo desenchufaron. Cuando yo llegué a las 8:30 nada estaba resuelta y se quedó así casi todo el día. Puedes creer esto??!! Una serie de problems logísticos, tecnológicos y de comunicación....y más de 12 horas sin nutrición. Ella pesa igual ahora que cuando llegamos el lunes! Yo estaba abogando por ella (estilo español!) y tuve que transformarme en Mamá Osa para lograr algo. Jenna estaba harta del tubo que había funcionado sólo 2 de los 4 días que hemos estado aquí. Ellos querían cambiar el tubo y ponerle otro (más grande!) mañana. NI HABLAR, JOSE!!! Hemos terminado con eso! Tuvimos la Gran Conversación con la endocrina y le dijimos que necesitamos mirar otras opciones. No nos fue fácil. A veces no estamos seguros de qué es cultural, qué es el mundo médico, qué es nuestra filosofía personal, etc. Pero al final, el tubo está fuera, ella está recibiendo nutrición por vena y mañana es otro día.
12 March 2014 Fairly smooth day, machine is humming calories but Jenna is pretty bothered by the tube. Let´s say that ¨bothered¨ is probably an understatement. Trying to hang in there. / Un día más fácil, la máquina está sonando calorias pero Jenna está bastante molesta por el tubo. Digamos que ¨molesta¨ no lo capta por completo! Intentando aguantar.
10-11 March 2014 After a long Monday and an even longer Mon night, we unfortunately were caught up in a series of logistical & technological glitches. In short, the machine that was to run the nutrition couldn´t be found, then the nurses weren´t sure how to run it, then it beeped all night and Jen got no nutrition until midday Tues when thru an x-ray, the tube was found to have a kink in it inside her. The unhappy machine kept beeping its displeasure until they finally just pulled the plug! Rough start. By Tues she was miserable and very weak as she had been fasting on Mon for the sedation part of placing the NG tube. After fixing the tube, the machine has worked silently and perfectly! Thank You, God! We talked to the endocrinologist about other options because Jen was so miserable but for now they feel this is the best way. We´ll carry on this week anyway; they want her to be on it for a month. They forgot an important detail: the tube has to be taped to her nose and it looks and feels a lot worse than we thought it would! / Después de un Lunes laaargo y una noche aún más largo, estuvimos en medio de una serie de problemas logísticos y tecnológicos. Para hacerle corto, la ¨bomba¨ (máquina) que monitore la nutrición no la podían encontrar, cuando llegó una de otra hospital, las enfermeras no sabían manejarla y después pitó toda la noche y Jenna ni durmió ni recibió nutrición hasta el mediodía el martes cuando por medio de una radiografía, se vió que la sonda estaba doblada dentro de ella. La máquina infeliz pitaba su desagrado hasta que la desenchufaron! Comienzo difícil. Para el martes ella ya estaba a la miseria con el tubo y muy débil porque estaba en ayunas para cuando la sedaron para ponerle la sonda gástrica. Después de arreglarlo, la bomba ha funcionado en silencio y a la perfección! Gracias, Dios! Hablamos con la endocrina de otras opciones porque Jen estaba tan molesta pero por ahora los médicos creen que esto es la mejor manera. Más adelante se pueden plantear otras cosas. Ellos quieren que lo use un mes. Se olvidaron de decirnos un detalle importante: la sonda tiene que estar fijado a su nariz y se ve y se siente mucho peor de lo que pensábamos!
9 March 2014 Happy to talk to Bruce and Daniela who are together this weekend in CA! They are visiting sweet Grandma together...We´ll go to the hospital tomorrow morning & will keep you posted on the NG tube. Jenna can´t wait to get calories pumped into her! Went to the beach for a bit with Jordan...beautiful day! / Feliz de poder hablar con Bruce y Daniela quienes están juntos este finde en California! Están visitando a nuestra dulce abuela juntos (madre de Bruce). Vamos al hospital mañana y les tendremos al tango en cuanto a la sonda gástrica. Jenna no puede esperar que le metan muchas calorias! Fuimos a la playa un poquito con Jordan...hermoso día!
8 March 2014 Waiting out the weekend, eating as best as she can! On Monday they will admit her to the hospital and get the feeding tube going. The pressure will then be off of her. She can continue to eat but know that she will be getting all essential calories whatever happens. Took her to the beach for a while and we enjoyed the sun. :) / Esperando que pase el finde, comiendo lo mejor que pueda! El lunes será ingresada para empezar con la sonda gástrica. Ya no tendrá presión sobre ella para comer. Ella va a continuar comiendo pero puede saber que está recibiendo todas las calorias esenciales sea lo que sea. La llevé a la playa y disfrutamos del sol. :) Que linda Málaga!
7 March 2014 Saw the endocrinologist/nutritionist & the GI surgeon today. It was very clear that Jenna needs additional nutrition since she has lost 10 kilos in a month. Other people may be able to afford this but she can´t! That is 18% of her body mass! So they are going to start with a feeding tube through her nose to the intestine (nice, huh). Eventually they´ll work up to 2500 calories a day. Let´s hope she can finally get some chubby cheeks! She was admitted into the hospital today but they ended up sending us home since they were lacking the personnel for her needs (??!!). 5 hours later, we were home. Sigh. She´ll be admitted on Monday for a week and then will come home with the tube for probably several weeks. This may need to be repeated or some variation used during chemo which will have its own challenges. We´ll keep you posted. The goal is to get her stronger so as not to delay chemo. / Vimos a la endocrina/nutricionista y el cirujano digestivo hoy. Estuvo muy claro que Jenna necesita nutrición adicional como ha perdido 10 kilos en un mes. Otras personas quizás puedan permitirse eso, pero ella no! Eso es 18% de su masa corporal! Van a empezar con una sonda gástrica por la nariz a los intestinos (que bonito). Con tiempo le van a dar hasta 2500 calorias. Esperamos que pueda obtener unos cachetes gordetes!! Hoy la ingresaron pero al final nos mandaron a casa porque le faltaba personal para sus necesidades (??!!). 5 horas despúes, estuvimos de vuelta en casa. Susurro. La van a ingresar el lunes para una semana y luego ella puede venirse a casa con la sonda por probablemente varias semanas. Esto podría ser repetido o alguna variación de ello durante el tiempo de quimio que va a tener sus propios desafíos. Vamos a mantenerles al tanto. La meta es que se pueda poner más fuerte para no postergar la quimio.
6 March 2014 Talked to 2 of Jen´s Dr´s by phone today. Tomorrow we have appts with the endocrinologist/nutritionist and her GI surgeon. Hopefully we can figure out what to do for her so that she can get the nutrition she needs to get well, to get strong again...and to move forward into chemo. We need some answers. / Hablé hoy con 2 de los médicos de Jenna. Mañana tenemos citas con la endocrina/nutricionista y su cirujano digestivo. Esperamos poder entender que hacer por ella para que ella pueda obtener la nutrición que necesita para recuperarse, para ganar fuerzas...y para poder moverse hacia la qhimio. Necesitamos respuestas.
5 March 2014 Struggling to eat much. It´s such a battle...we have no idea how we can add chemo to this... / Luchando para comer sólo un poco. Es una lucha tan grande...no tenemos ni idea como podemos agregar la quimio a esto...
4 March 2014 Eating very small quantities; still losing weight. Trying to communicate with the endocrinologist... / Comiendo cantidades muy pequeñas; sigue bajando de peso. EStamos tratando de comunicarnos con la endocrina...
3 March 3 2014 Ate a little better today, nausea is down. Not sleeping great. / Comió un poquito mejor hoy, las náuseas son menos. No está durmiendo muy bien.
2 March 2014 Ditto. / lo mismo q ayer.
1 March 2014 Today was a lot better. The medication helped keep nausea at bay and she was able to keep some food down. So thankful. Peaceful day. :) / Hoy fue mucho mejor. El medicamento disminuyó mucho las náuseas y pudo comer algo. Muy agradecida. Día tranquilo.
28 Feb 2014 The last 3 days have been very disconcerting. Constant nausea and lots of spams have equalled almost NO food taken in. She is weak and discouraged. Went to the ER tonight to see a Dr and she got an IV to hydrate her and give her a dose of anti nausea med. We have an Rx for an anti nausea med to try the next couple of days. They took blood and her analysis was good. If things don´t get better, she´ll have to go to the hospital for a while to get a feeding tube.... / Los últimos 3 días han sido desanimadores. Náuseas contínuas y muchos espasmos han significado que está casi sin comer. Está débil y desanimada. Fuimos a Urgencias esta tarde para ver a un médico y le dieron una vía para hidratarla y darle un medicamento anti náuseas. Tenemos además una receta para un med anti náuseas para probar en estos días. Le quitaron sangre y salió bien la analítica. Si no hay mejoría, tendrá que ingresarse al hospital para recibir una sonda gástrica para nutrición....
27 Feb 2014 Lots of nausea today. Don't know why. Feel like we're playing a guessing game a lot of the time...what caused the pain? was it the food? just the intestines learning their new job? esophageal spasms? Why can she keep a food down one day and not another? With 6 small meals being so small (like half a yogurt), how can she ever get enough calories?? If she throws up one or a meal gets usurped by esophageal spams and she can't finish the meal, we're even worse off! Jenna & I don't like that life is revolving around food. / Muchas náuseas hoy. No sabemos porqué. Sentimos que estamos adivinando muchas cosas todo el tiempo...qué causó el dolor? fue la comida? es que los intestinos están aprendiendo su nueva función? espásmos del esófago? Porqué le cae bien una comida un día o no el próximo día? Con 6 comidas pequeñas siendo tan pequeñas (como medio yogurt), como puede ingerir suficientes calorías? Si vomita una comida o le agarran espásmos del esófago y no puede terminar su comida, estamos aún peores! Ni Jenna ni yo nos gusta que nuestra vida se está girando alrededor de la comida.
26 Feb 2014 Rough day. Jenna didn´t feel good most of the day and we don´t know why. She hardly got any food down. Late afternoon we had our first appt with the oncologist and we went ready with questions. What we weren´t prepared for was that her chemo is going to last 5 months! 6 sessions of 21 days each. She´ll have a permanent IV by her collarbone and a bag of medication that will drip into her 3 weeks at a time. Fun stuff. She´ll lose her hair and can´t be in the sun all summer. I think we were both shell shocked as we left... At least we liked the Dr. / Día terrible. Jenna no se sentía bien todo el día y no sabemos porqué. Apenas comió. A la trade tuvimos nuestra primera cita con el oncólogo y fuimos listas con nuestras preguntas. Pero no estábamos listas para la información sobre la quimio: 5 meses!! 6 sesiones de 21 días cada uno. Tendrá una vía permanente cerca del cuello y una bolsa de medicamento que saldrá por gotas por 3 semanas. Que divertido. Va a perder su pelo y no puede tomar sol durante todo el verano. Creo que salimos bastante shoqueados...por lo menos nos cayó bien el médico.
25 Feb 2014 Not a great day for eating. She´s having a lot of spasms or cramping in her esophagus and a lot of times it hits her as she starts to eat and it sabotages the meal. Catherine (the nurse) gave us a few ideas about that but we still need to experiment. She was better by evening and we had some friends come by for a short visit. Bruce & I went out to eat with some dear friends and we had to leave her alone for a while until Jordan joined her after fútbol practice! I can´t believe we need a babysitter for our 22 year-old!! / El día no fue tan bueno en cuanto a comer. Ella está experimentando muchos espásmos o calambres en el esófago y muchas veces le pasa cuando come y sabotea la comida. Catherine (la enfermera) nos dió algunas ideas en cuanto a eso pero tenemos que seguir experimentando. Ella se mejoró por la tarde y recibimos una pareja puertoriqueña amigos nuestros por una visita. Con Bruce salimos para cenar con unos amigos y tuvimos que dejarla un rato sóla hasta que volvió Jordan de su entrenamiento de fútbol! No puedo creer que necesitamos una niñera para nuestra hija de 22 años!
24 Feb 2014 Got to talk with Catherine, a 40-year oncology nurse from the US who I ¨happened¨ to meet in church a couple weeks ago. She was so helpful answering our many questions. In the afternoon, in spite of a so-so day, Jenna was serenaded by some special visitors who came by to bless her. Wow! They are all musicians from Paraguay, latino friends from church and they brought a guitar and a cajón and sang Argentine tangos and Paraguayan folk songs! / Pudimos hablar con Catherine, una enfermera de oncología durante 4o años a quien ¨por casualidad¨ conocí en la iglesia hace un par de semanas. Nos ayudó muchísimo, contestando nuestras muchas preguntas. Por la tarde, a pesar de un día más o menos, unas visitas le cantaron a Jenna para bendecirla. Wow! Los cuatro son músicos de Paraguay, amigos latinos de nuestra iglesia, y trajeron una guitarra y un cajón y le cantaron tangos Argentinos y canciones folklóricas Paraguayas!
23 Feb 2014 Better day eating. Made homemade shakes instead of the bottled ones which were not settling well at all. She walked around our entire block which was the farthest she´s gone. :) / Mejor día para comer. Hicimos batidos de proteína caseros en lugar de los de la farmacia que le sentaban fatal. Ella caminó una manzana entera que fue lo más lejos hasta ahora. :)
22 Feb 2014 First outing today (besides to the hospital!)...down to the beach for a short walk. Jen LOVED seeing the sea again and even though it was windy it was good. Ran into some friends & had a short chat and then drove out to the country around sunset. Beautiful! Good change of scenery. :) We still have lots of challenges eating. / Primer paseo hoy (aparte del hospital!)...al paseo marítimo para una caminata corta. A Jen le ENCANTÓ poder ver otra vez al mar y a pesar del viento lo pasó bien. Nos encontramos con algunos amigos y hablamos un poco y después en el coche nos fuimos al campo (hacía Coín) mientras se ponía el sol. Hermoso! Un buen cambio. :) Seguimos con mucho desafío para comer.
21 Feb 2014 First F/U appt with the surgeon today. Good news: pathology report showed no cancer in the lymph glands around the stomach - very strange (miraculous?) as that´s usually its first travel point. No other unexpected cancer. A big surprise was realizing through the report that they also took out her appendix & gall bladder! Not sure if that was a 3-organs-for-the-price-of-one deal or that we should be grateful for this apparent common precaution! Met with the endocrinologist/nutritionist also and there were no surprises: Jenna is very underweight and must gain weight in the next 2 wks or she could be hospitalized with a feeding tube through her nose for a week! Pray for us in this daily battle to gain weight! / Primera cita con el cirujano hoy. Las buenas: el reporte patológico mostró que no había cáncer en las glándulas linfáticas alrededor del estómago - muy extraño (milagroso?) como eso es dónde se viaja primero. No hubo otras señales de cáncer inesperado. Una sorpresa grande fue que le quitaron su apéndice y vesícula también! No estamos seguros si esto fue una oferta 3 por 1 o si deberíamos ester agradecidos por esta precaución aparentamente común. También nos vimos con el endocrino/nutricionista y no hubo sorpresas: Jenna está muy bajo de peso y tiene que augmenter bastante en las próximas 2 semanas o puede que le ingresen por una semana para darle por sonda (en la nariz!) una nutrición. Oren con nosotros por esta lucha diaria para aumentar de peso!
20 Feb 2014 These first few days at home have been full of ups and downs. The daily task is to eat every 2 hrs, adding new things and seeing what sets well with her. She can't eat and drink at the same time. It's a struggle and there's still a lot of pain involved with eating. She eats very little at a time and has lost 6 kilos so far. We stick to a bland, easy-to-digest diet with little fiber for now. As her intestines adjust to their new job, we can add new kinds of food to her list. / Estos primeros días en casa han sido lleno de subes y bajas. El labor diario es comer cada 2 horas, agregando cosas nuevas y averiguando que le cae bien. No puede comer y beber a la vez. Es una lucha y todavía hay mucho dolor con el tema de comer. Ella come muy poco a la vez y ha perdido 6 kilos hasta ahora. Usamos una dieta blanda y fácil a digerir por ahora. Mientras sus intestinos se van ajustando a su nuevo trabajo, agregamos comida nueva a su lista.
16 Feb 2014 Jen slept well in her ¨new¨ room last night. We switched her bed from the attic to my office and put my desk and some other things up in her old room. Now she has fewer stairs and is close to the bathroom and to us. It was fun to set that up for her; one of my most pleasant tasks in the last few weeks! :) She´s eating better now that it´s Mom´s nutritious, home-made cooking! / Jen durmió bien en su ¨nuevo¨ cuarto anoche. Cambiamos su cama de la buhardilla a mi oficina y mi escritorio y algunas otras cosas a su viejo cuarto. Ahora tiene menos escalera y está más cerca del baño y a nosotros. Fue super divertido poder armarle eso; era uno de mis trabajos más agradables en las últimas semanas! :) Está comiendo mejor ahora que es la comida sana de mamá.
15 Feb 2014 She came home!! She had a better afternoon yesterday and the Drs. say she will experience pain and have difficulty eating for some time. She can do that at the hospital or at home. Guess what she chose? We are thrilled to all be together again starting Phase II. / Se vino a casa! Tuvo una mejor tarde ayer y los médico dicen que es normal que experimente dolor y que tenga dificultad para comer por un tiempo. Ella puede hacer eso en el hospital o en casa. Adivina qué eligió?! Estamos emocionados de estar todos juntos de nuevo y empezar Fase II:
14 Feb 2014 Rough morning. Experienced her first episode of "Dumping Syndrome¨. We hadn´t heard of it before this week but we didn´t like the way it sounded! It basically means that food has gone too fast through the system and caused a reaction including: rapid heart rate, sweating, cramping, nausea, dizziness and sometimes diarrhea. Nice. She drank a protein shake that they gave her and it was too much, causing her body to go into this reaction (minus the big D). It takes a while to recover from that and she didn´t attempt anything else until late in the day. This time it went better. We just have to learn which foods cause this reaction in her and avoid them for now. There´s a long road ahead and we need to be patient and determined. The Drs say she may go home tomorrow... / Una mañana difícil. Ella experimentó su primer episodio de ¨Dumping Syndrome o Síndrome de Resección Intestinal¨. No habíamos escuchado de esto antes de esta semana pero no nos gustó como sonaba! Basicamente significa que comida ha pasado demasiado rápido por su sistema y causa una reacción que incluye: taquicardia, sudores, cólicos, nausea, mareo y a veces diarrea. Que bárbaro. Ella tomó un batido protéico que le habían dado y fue demasiado, causando esta reacción en su cuerpo (menos la diarrea). Lleva tiempo recuperarse de eso y no intentó comer hasta la tarde. Esta vez le fue mejor. Tenemos que aprender cúales son las comidas que le causan este síndrome e evitarlas por ahora. Hay un camino largo por delante y tenemos que ser pacientes y determinados. Los médicos dicen que puede que le den el alta mañana...
13 Feb 2014 Today they took out half of Jen´s staples and the main IV tube in her neck. What a relief! Now she has to get all her nutrition and any medication by mouth. We met with an endocrinologist to talk about diet and supplements. Jenna is having a hard time today eating, experiencing lots of intestinal pain but it´s not clear if it´s all about the eating or that pain meds aren´t being assimilated correctly. / Hoy le quitaron la mitad de las grapas y la vía central de su cuello. Que alivio! Ahora tiene que obtener toda su nutrición y medicación por boca. Hablamos con un endocrino para hablar de la dieta y suplementos. Jenna ha experimentado mucha dificultad hoy en comer y ha experimentado bastante dolor intestinal pero no está claro si se trata de la comida o si es que los analgésicos no están siendo bien asimilados.
12 Feb 2014 Jenna is taking short walks, is awake all day and today started on a "bland diet". Yogurt, soft cheese, turkey slices, light crackers, more broth. She can only eat a wee bit at a time but she's doing it! Today the Drs. took her off the IV nutrition and we are a bit nervous about how she is going to consume those 2500 calories she was getting...Tomorrow we meet with a nutritionist to talk about her needs & the strategy to keep the weight on! / Jenna está tomando paseos cortos, está despierta todo el día y hoy empezó con una dieta blanda. Yoghurt, queso blanco, pavo, galletas saladas, más caldo. Sólo puede comer muy poquito a la vez pero lo está haciendo! Hoy los médicos le quitaron la nutrición intravenosa y estamos un poco ansiosos de como va a consumir esas 2500 calorias que estaba recibiendo...Mañana nos reunimos con un nutricionista para hablar de sus necesidades y la estratégia para mantener su peso!
11Feb 2014 Graduated to broth and jello, people! It was not Mom´s homemade broth, she wants to make clear. She felt full so quickly and yet it was ¨so unsatisfying.¨ You don´t really get that satiated feeling. Then she was really hungry by merienda (tea time) and all she could have was chamomile tea. (I saw her googling chocolate almond cakes while she drank it!) / Se graduó a caldo y gelatina, gente! No era el caldito de mamá, ella aclaró. Se llenó pronto y no ¨le satisfacía¨. Es como que ya no tiene la sensación de ser saciada. Tenía mucha hambre ya para la merienda pero sólo le dieron té de manzanilla. (Yo la ví en su computadora mirando en Google ¨tartas de chocolate y almendras¨ mientras lo tomaba!)
10 Feb 2014 Today´s big event was getting a special x-ray while she sipped something to see if the esophagus is healed and not leaky. Of course she threw up the stuff all over on the machine and fainted just to keep things interesting. :) She passed the test in spite of it all! So now she gets to sip water and camomile tea! So happy to swallow something after nothing for 8 days! It feels very strange and is ¨not that satisfying¨ but it´s all about a little at a time right now. She also got the 2nd abdominal drainage tube taken out (ouch!) and her first shower in over a week. :) Feeling very content. / El gran evento hoy fue hacerse una radiografía especial mientras tragaba algo para ver si el esófago está sanado y que no pierda. Por supuesto vomitó sobre la máquina y se desmayó para que todo sea más interesante. :) Pasó la prueba! Ahora puede tomar sorbitos de agua y té de manzanilla! Está feliz a tragar algo después de nada por 8 días! Da una sensación rara y ¨no te satisface igual¨ pero tenemos que ir poco a poco ahora. También le quitaron el segundo tubo de drenaje del abdómen y se dió su primera ducha en más de una semana! :) Se siente contenta.
9 Feb 2014 Got to a private room last night! Yahoo! A big change for her and she is happy. Far less wires and tubes. There is still lots of pain & nausea that they are trying to control. Today they took out her catheter and one of the abdominal drainage tubes so that´s a relief. She got to sit up for the first time and take 2 steps to a comfy chair. Gotta celebrate each step! Read Psalms to her, listened to music and she fell asleep. :) / Llegamos a una habitación privada anoche. Yahoo! Es un gran cambio y ella está feliz. Hay mucho menos cables y tubos. Todavía hay mucho dolor y nauseas que están tratando de controlar. Hoy le quitaron una sonda urinaria y uno de los tubos abdominales de drenaje así que eso fue un alivio. Pudo incorporarse por primera vez y to mar 2 pasos a un sillón cómodo. Celebremos cada paso! Le leí varios Salmos, pusimos música y se quedó dormida. :)
8 Feb 2014 The Drs say Jenna is ready to go to a regular room. They have weaned her off the stronger pain meds, oxygen and all of her vitals are good and her blood work as well. She looked so much better today...much more awake and starting to smile. She can now rinse her mouth with water and spit it out - her big treat! (Before that the highlight was sucking on a piece of wet gauze!) / Los médicos dicen que Jenna está lista para ir a planta. Le han quitado los medicamentos más fuertes, oxígeno y todos sus vitales están bien y su analítica también. Se veía mucho mejor hoy...más despabilada y empezando a sonreir. Ahora puede enjuagar su boca con agua y escupirlo - algo muy especial! (Antes que eso lo más especial era poner una gaza mojada en la boca!)
6 Feb evening: Jenna is progressing but they have her pretty sedated because of the pain. She has a bit of fever tonight & is on extra oxygen. Everything else is good. She´ll be in ICU until Monday. I miss her smile.... / Jenna está progresando pero la tienen bastante sedada por el dolor. Tiene un poco de fiebre esta noche y le están dando oxígeno. Todo lo demás está bien. Va a estar en la UCI hasta el lunes. Extraño su sonrisa....
6 Feb 2014 After an afternoon with a lot of pain & nausea, they seemed to find the right amount to relax her and that let her sleep last night. Thankful. They gave her more blood (3 bags and 2 of plasma) and she is looking stronger from that. Last night we got to take Jordan and the two of them smiled and smiled! Such good medicine being able to see each other! She was relaxed and peaceful but open-eyed and talking a bit more. Today she was very sedated and didn´t say much...they are trying to find the right balance for her. She is progressing & everyone says she´s a great patient. :) / Después de una tarde de mucho dolor y nauseas, parece que encontraron la cantidad justa para relajarla y eso le dejó dormir anoche. Agradecida. Le dieron más sangre (3 bolsas y 2 de plasma) y ella se ve con más fuerza. Anoche pudimos llevar a Jordan por primera fez y los dos no dejaban de sonreirse! Una buena medicina poder verse! Ella estaba relajada y tranquil pero con los ojos abiertos y hablando un poco más. Hoy estaba bast ante sedada y no dijo mucho ni abrió mucho sus ojos...están buscando el equilibrio justo para ella. Está progresando y todos dicen que es muy buena paciente. :)
5 Feb 2014 Last night Jenna was peaceful and had great color in her cheeks; she was the most beautiful patient ever! They let us see her from 1-2pm and from 8-9pm. Today during our visiting hour she was in pain and had a lot of nausea. They are working to find the right balance of meds to keep her comfortable. The Drs are pleased with her progress but she will remain in ICU for a few more days. / Anoche Jenna estaba tranquila y tenía buen color; era la paciente más hermosa jamás! Nos dejan verla de 13-14hs y de 20-21hs. Hoy durante nuestra visita ella tenía bastante dolor y muchas nauseas. Los médicos están viendo cual es el equilibrio justo para que esté cómoda. Los médicos están contentos con su progreso pero debe quedarse en la UCI para varios días más.
4 Feb 2014 Had a bit of a scare today. We were heading in to visit Jenna when we got a phone call from a Dr. in the ICU. He said Jenna was bleeding and it looked like they would have to open her up again. We rushed up there and fortunately were able to see her before they wheeled her into emergency surgery. It was sooooo great to hold her hand, kiss her forehead and pray in her ear. She said little, was feeling really weak from the loss of blood and the whole operation but said a few things. The operation didn´t last long; they found a bleeding artery, closed it up and she stabilized. We´ll get to see her later when she´s awake. / Tuvimos un susto hoy. Estábamos llegando al hospital cuando un médico nos llamó de la UCI. Dijo que Jenna estaba sangrando y parecía que iban a tenet que intervenir otra vez. Subimos volando y afortunadamente pudimos verla antes de que se lo llevaron al quirófano urgentemente. Que lindo tomarla la mano, besar su frente, orar en su oído! Ella dijo poco, se sentía débil de perder sangre y todo la internvención el día anterior pero dijo algunas palabras. La operación duró poco; encontraron una arteria que estaba sangrando, lo cerraron y ella se estableció. Vamos a poder versa más tarde cuando se despierte.
3 Feb 2014 Jenna underwent the gastrectomy yesterday and the Drs were really satisfied with the clean work completed. In addition to removing the stomach which held the primary cancer, they found 3 other small (less than a centimeter) tumors in various places and took them out. They searched everything within her abdomen for any other traces and then administered the local chemo wash. They took her at 9:30 and we didn´t see her til 8pm in ICU. She was still asleep so we are looking forward to seeing her today! / Jenna se sometió a una gastrectomía ayer y los médicos estaban muy satisfechos con el trabajo limpio completado. Además de quitarle el estómago donde estaba el cáncer primario, encontraron 3 otros pequeños tumores de menos de un centímetro en varios sitios y se los quitaron. Buscaban por todo su abdómen por cualquier otra muestra y después le administraron el chimio localizado. Se la llevaron a las 9:30 y no la vimos hasta las 20 horas en la UCI. Todavía estaba dormida así que tenemos muchas ganas de verla hoy!
31 Jan 2014 We met with 2 oncologists this morning at the hospital. We were able to discuss the findings of our second opinion from MD Anderson Madrid and hear the rationale for what they are presenting us. We felt really good about what has come together and are moving forward. This plan is in today's post. / Nos reunimos con 2 oncólogos esta mañana en el hospital. Pudimos hablar de lo que escuchamos ayer en la 2da opinion de MD Anderson Madrid (un centro para cáncer) y escuchar sus razones por lo que nos presentan. Nos sentimos bien de cómo ha salido y vamos adelante. El plan está en el post de hoy.
30 Jan 2014 We traveled to Madrid today to meet with 2 Drs. at MD Anderson, a Surgical GI surgeon and an Oncologist. They were great and gave us some new information that was helpful and that we will discuss with Jenna´s Dr. tomorrow morning. / Viajamos a Madrid hoy para reunirnos con 2 Drs en MD Anderson, un cirugano digestivo y un oncólogo. Fueron buenísimos y now dieron nueva información que nos ayudó y que vamos a charlar mañana con el Jefe de Oncología.
23 Jan 2014 We decide to get a few other opinions and get two by phone and e-mail. We set up an appt for MD Anderson in Madrid for the 30 Jan to get a specific cancer center opinion. / Decidimos buscar algunas otras opiniones médicas y obtenemos 2 pro correo electrónico y teléfono gracias a algunos contactos personales. Sacamos otra cita en MD Anderson en Madrid para el 30 enero para obtener una opinion de centro especializado en cáncer.
22 Jan 2014 The other part of this meeting was discussing the treatment plan: the medical team still feels that the only cure is a gastrectomy (take out the whole stomach) and then chemo. / La otra parte de esta cita fue discutir el plan de tratamiento: el equipo médico todavía siente que la única cura es una gastrectomía (quitar el estómago entero) y administrar quimio.
22 Jan 2014 We meet with the Dr. who gives us the good news that there is NO MORE CANCER other than what we already know about - stomach and the original umbilical tumor! So thankful! / Nos reunimos con el Dr. quien nos cuenta la buena noticia de que NO HAY MÁS CÁNCER de lo que ya sabíamos - el estómago y el tumor umbilical original. Muy agradecidos!!
21 Jan 2014 Jenna does a PET Scan, which searched her whole body for any cancerous activity. / Jenna hace un PET TAC, que buscaba su cuerpo entero para cualquier actividad cancerosa.
14 Jan 2014 Jenna undergoes an exploratory laparoscopy and thankfully, only a small dot on her diaphragm was seen. They also biopsied her abdominal liquid and that later came back negative. But this was also the day they confirmed the biopsy of the stomach ulcer: adenocarcinoma - the same cancerous cells that were found in the umbilical tumor. / A Jenna le hacen una laparoscopia exploratoria y gracias a Dios, solamente un puntito fue visto en su diafragma. Tambien le sacaron líquido de su abdómen que más trade salió negativo. Pero también fue el día que confirmaron la biopsia de la úlcera de su estómago: adenocarcinoma - las mismas células cancerosas que habían sido encontrado en el tumor umbilical.
10 Jan 2014 Under general anesthesia, Jenna undergoes a colonoscopy and gastroscopy. This was the day they found something. The Dr. was quite convinced they had found an ulcer with a cancerous profile in her stomach. After she was up, we met with him and that was the first day it really hit us that she had cancer. / Bajo anestesia local, le hacen un colonoscopia y gastroscopia. Esto fue el día que encontraron algo. El Dr. estaba convencido que habían encontrado una úlcera con un perfíl canceroso en su estómago. Cuando ella se había recuperado, nos reunimos con él y eso fue el primer día que nos dimos cuenta que realmente tenía cáncer.
23 Dec - 9 Jan 2014 Tests, tests, tests!/Pruebas, pruebas, pruebas!/various MRIs, bloodwork, sonograms, Gyn exam, GI tests (yuck!!) / varias TAC, analítica de sangre, ecografías, cita ginecológica, pruebas del sistema digestivo (que asco!)
20 December 2013 The Dr. tells us her biopsy was sent for ¨additional studies¨. / El doctor nos dice que le enviaron su biopsia porque le tienen que hacer ¨más estudios¨. Hmmmm...
5 December 2013 Jenna´s umbilical tumor is removed under local anesthesia. / El tumor umbilical de Jenna está quitada bajo anestesia local. 4cm!!
Photo by: PixelSmithy
Dear Pam and Bruce,
ReplyDeleteOur Charlottesville congregation and our friends are holding you all up in prayer each day. (We are also checking in with your dad to hear the latest news via Aunt Marilyn.) We are truly thankful that Jenna is receiving such good care and is getting stronger each day. Our Lord is the Mighty Healer, and we know that He is reaching out to touch Jenna as only He can do.
You are in our hearts and we love you all,
Cheryl and John
Thanks for standing with us, dear Cheryl and family! love you guys
DeleteSo sorry to hear about the dumping syndrome. I too have to watch out for that. For over a year that was all I was told. I learned almost by accident that I no longer produce all the needed enzymes. For some reason after my surgery (much like Jenna's) I had to watch out for gluten, too much processed sugar, and lactose. Vegetarian enzymes capsules and avoiding gluten was huge in avoiding the DS. We think of Jenna and pray for her constantly! Things will get better. My redeemer lives and I know He will redeem Jenna's health and strength!
ReplyDeleteThanks for all the practical help, Barry. And thanks for standing with us before the Redeemer!
ReplyDeleteGracias Pam! Jenna lo está haciendo muy bien, ,,seguimos orando!
ReplyDeleteIt is encouraging to read that Jenna is able to get up and out and see some of God's wonderful creation. I am not a doctor, but that seems like good therapy to me. As Jenna's body adjusts to the new reality it is encouraging to read David's song. Though from a different era, it speaks in reality today, "I praise you because of the wonderful way you created me. Everything you do is marvelous! Of this I have no doubt. Nothing about me is hidden from you! I was secretly woven together deep in the earth below,
ReplyDeletebut with your own eyes you saw my body being formed. Even before I was born, you had written in your book everything I would do" (Ps. 139:14-16 CEV). Because He has created us, not even the effects of the fall (i.e. cancer) can hinder his plan for Jenna's life. And, since He has all authority I pray that he will intervene within the body He has created and cause her to absorb the necessary nutrients and gain weight. He knows precisely what she needs and how to get it done. And, during this season, I pray that His peace would shelter all of you in the cleft of the rock until the storm passes by.
James, It has been very special for Bruce and I to have your encouragement at this time for you hardly know us and we are sure you are extremely busy. THANK YOU and BLESS YOU for your heartfelt prayers & words. You have touched us...
DeleteHi Pam!
ReplyDeleteMy name is Erin Silvius and somehow (not sure the exact connection) you are connected with my parents, Bill and Robin. I remember reading your letters growing up and always relating to Jenna because we're close in age. My mom told me about your blog today and I'm caught up, wanting to read every post. Your heart and your words are so beautifully real and raw. My heart breaks, yet rejoices with you as you seek to find God's grace in each day and seek His hand in everything. Jesus is clearly shining through your writing and through Jenna's story and, only by the grace of God, this blog speaks encouragement.
I am praying for Jenna, for your family, for healing, and for God's peace and joy to be more abundant than you have ever experienced. How I wish I could reach through the screen and pray for you all and give Jenna a huge hug. I am confident of this: God is faithful and God is good. I pray that He brings a fresh sense of that today and every day.
Although we've never met, tell Jenna hello and that her beautiful faith in God is so evident and encouraging. She is a gorgeous girl, inside and out. She has my prayers from Seattle!
"I believe that I shall see the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage; wait for the Lord." - Psalm 27:13-14 Let the words of Psalm 27 soak into you and your family today.
Lots of love,
Erin Silvius
Erin, it is so special to ¨meet¨ you this way. We haven´t seen your folks in a loooong time. I can´t believe you´re reading this blog, that you remember us from when you were smaller, that your beautiful faith is so encouraging to me. I will share this with Jen...
ReplyDeleteThanks for Ps 27....LOVE that.
Pam, this is Debbie Kornfield. I've been a largely silent observer as we've been working through events with Karis. Wondering though if they need the port for chemo, why they don't put in another central line for TPN?
ReplyDeleteThanks, Debbie, I always value your input....I have no idea why they haven´t mentioned this...I know they don´t like sending patients home with anything in the veins (although they would´ve let her come home with an NG tube). Will definitely ask about that. Don´t think she could take a PICC line quite yet as her veins are shot but perhaps in a couple weeks? I´m truly nervous about all the calorie intake being by mouth...don´t see how she´s going to be able to do it short of a miracle.
ReplyDeleteMuch love and God´s deep comfort to you all
So sorry to hear of the recent set backs. We continue to pray and know good days are coming! This too will pass and we pray it will be soon!
ReplyDeleteDear Pam and Bruce,
ReplyDeleteWe heard about Jenna recently through our friends Beth and Ron Sider. It has been challenging to read through your writings as parents ourselves. How our parent-instinct wishes to protect our children from every pain possible!
Your faith and witness are simply amazing. You have been honest with your circumstances, faithful in your affirmations, caring in every moment for Jenna and are a reminder to all of us who read your words that "the righteous shall live by faith"
As we read of the daily challenges Jenna faces, we pray for continued daily grace to all of you- and for the Lord's touch of mercy. Your reflections reminded us of the words of Dr. Warren W. Wiersbe that "We do not always live by explanations, we live by God's promises"
Please let Jenna know that a family in India have joined her many friends to kneel and whisper her name at the throne of grace.
Sincerely and with love,
Arun and Miriam Andrews
Queridos amigos...
ReplyDeleteSolo agradecerles la constancia en escribir y dejarles saber que los hemos estado acompañando, alzándolos ante ese trono de la gracia en medio del cual está aquel Cordero inmolado cuya deslumbrante luz disipa toda sombra y cuya poderosa redención hará nuevas todas las cosas... (Ap.21y22)
Copartícipes en el sufrimiento, en el reino y en la perseverancia de Jesucristo (Ap.1:9),
Andrés y Angélica Prins
Praying this for you today.
ReplyDeletehttp://www.youtube.com/watch?v=CR5IoWH9OiI
Lord, we look to You.
Dear Pam, Brucem Dani and Jordan,
ReplyDeleteI posted a long message to you but it seems it did not work. Our hearts are breaking for the loss your beloved, beautiful, sweet Jenna. I (Clare) have shed tears for a girl I never knew, but have followed your blog faithfully since her diagnosis and have prayed and prayed. Oh I cannot comprehend your grief - the depth of it. I feel such deep sorrow for your pain and loss dear friends. We ask the Lord 'Why?' What's the plan? My prayer is that He would be gracious enough to give you a glimpse. I never met your lovely Jenna in person but I feel that I know her and love her thanks to your blog Pam. Thank you for allowing us to be a part of the raw and incredible journey that she and you were forced to take. A journey of faith and trust... of Him who understands and know and plans all things to perfection. We rejoice in the total assurance that Jenna is happy, carefree, sickness free and joyful as she should be with the One who has saved and redeemed us. Nothing can touch her. Nothing can harm her she is perfected in Him as we trust we will also be. Our prayers are for you - the left behind, the grieved. The distressedI I cannot imagine your pain. Please know that we will not stop praying for you. We pray the peace and the comfort of our Lord will rule over your hearts and minds for ever more until you are reunited in glory.
Clare and Jack McCullars
To our dear family~Pam, Bruce, Dani and Jordan,
ReplyDeleteWe are heartbroken with the news of Jenna's passing. Tonight our friends gathered to pray for you all and to lift you up to our Precious Lord who knows of your tears and the incredible pain in your hearts. Jenna is with Jesus now. She is no longer suffering, but dancing in joy, free of pain and fear. We rejoice in the knowledge that you will all be together with dear Jenna again in heaven. Until then, we will hold you close in our prayers.
Your cousins, Aunt Marilyn, and family here are missing you all and are so sad that we cannot be there with you today. We love you with all our hearts and will not stop praying for you in the days and weeks ahead.
Lovingly, Cheryl, Brenda and Cynthia
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ReplyDeleteDearest Jenna,
ReplyDeleteI had to write to you, to say good-bye in some way. In your going, a month today, I pray for God's Spirit to comfort all your loved ones; this is, certainly, the most difficult time your family has ever faced.
You were an example in every way to all at the Azusa Pacific University LA Term program (speech, behavior, attitude, et cetera). I vividly remember how bold you were in coming to talk to me and Prof. Paul Hertig after the Chief Border Patrol, Deputy Scott, briefed our group on the predicaments at the US-Mexico border. Your burden for the injustices was real, and you had so much to say...
I wept a lot, and for a long time, when the news were communicated to me by Paul; knowing the kind of person you were made to be, by God's grace and your family's amazing influence. It is close to impossible to process your absence.
From my own witness, you were an always giving, cheerful, honest and caring kind of a friend, an extremely brilliant student (the only other 'A' grade in your class). I was honored and blessed to have you in my immigration class as a one of my suma cum laude students. You always had so much to give, even when you reflected for the class on the Spanish immigration dept.'s bureaucracy (you brought so much wit and humor into it!) You were the true immigrant, like Christ, going from continent to continent and adopting amazing qualities that made you a beautiful, perceptive and inquisitive person.
I, and the LA Term at APU, will miss dearly miss you.
Because of our hope in Christ, we confidently only say 'bye for now.'
With love and prayers to Pam, Bruce, Dani, Jordan and extended family,
Gus Zdanovich
Azusa Pacific University