I started this blog to keep all our friends and love ones updated on Nicks progress but it is also for ourselves, to see how far we have come and to see the trials we have fought and learned from. I apologize in advance for the depth of detail sections of this may cover.
Nick had a lumbar punture and bone marrow aspirate last Wednesday to end his first phase of treatment (induction). Everything went fairly smooth at the hospital which was great but then due to a freeway accident and closure it took us over 2 hours to get home. Made for a fairly long day for sure, but we got home safely and all was good.
Thursday morning Nick woke up fairly early in a significant amount of pain. The meds we have at home were not touching it and Nick asked to go to the hospital. We called up and the clinic had us come there. We spent the day in an exam room in clinic hoping control the pain and maybe see if there was something being missed. He was sent for an X-ray and later another CT Scan but no real resolve to the pain. The pain was likely just from going off his meds from phase one and his body adjusting but it was very difficult to watch him be so uncomfortable and miserable. By early evening they decided to admit him and we were in a room by about 6:00 pm.
Friday started off well. Nick was feeling a bit better, the pain was getting more manageable and was being treated with med options we had available at home. That morning we found out that Nick's Bone Marrow aspirate test indicated the marrow was not as Leukemia free as was hoped for. It was a bit of a blow as we were expecting the best. Per his doctor he is basically in remission just not MRD (Minimal Residual Disease) remission. They will retest the marrow at the end of phase two (Consolidation) and the doctor is confident he will get to MRD remission.
After leaving for the evening I received a call once I got home from Bryan with another blow. They found out that Nick had a blood clot near his PICC line and it would need to be pulled. He was also going to need to start on a blood thinning shots that are given to him in his stomach 2 times a day for the next 3-6 weeks. It was some pretty hard news for Nick and he was very upset. I talked to him on the phone and decided I needed to head back up to the hospital. I got back there around 10 pm and both Bryan and I ended up staying the night. Huge thanks to my parents for driving to my house that night to be with our other 2 kids. They are awesome!
Saturday was frustrating simply for the fact we were told in the morning the PICC line could come out whenever it worked for us, which was great as Bryan needed to leave for a few hours. We had told them we would plan on doing it in the evening after Nick's dad got back but around 4 they came in and indicated it needed to be done ASAP. I was upset that the timeline had changed but Nick and I decided we could do this. Nick was a trooper and it went really well. The dressing for his PICC line was the most painful part and he already does that every week. The actual removal of the line was about 2 seconds and no pain. They had drawn his blood about 5 times that day so I was very grateful we kept the PICC line in as long as we did.
Saturday included a lot of being "Lifted Up". A very special family we have the pleasure of knowing held a 3 V 3 Memorial Soccer Tournament for their son Ethan who died of Leukemia 2 years ago. The Van Leuven family reached out to me days after Nick's diagnosis to ask if they could include our
family in their tournament. They wanted to collect donations for Primary Children's as well as our family.With some persuasion from Jennifer Van Leuven (Ethan's mom) I agreed to it.
The Van Leuven family has been a part of our soccer family for the last 2 years. Their son plays on the soccer team Bryan coaches and Alex is a part of. They joined our team the summer before their son Ethan passed. Ethan's viewing was on Halloween that year and we were able to assemble almost our entire team to attend the viewing together and show our support to the family and the boys teammate. It was one of the most emotional experiences I can remember. Those 14 year old boys all meeting to go support a teammate on Halloween evening. It still brings tears to my eyes to think of it. It was amazing.
Bryan went to the Soccer Tournament/ Fundraiser and was overwhelmed at the outpouring of love and support. There were many of Nick's old teammates from the years he played for Ruff Ryders and then I think almost all of his new team, Razzia Rage was there. Many of the young men from Bryan's team also came. It meant a great deal to our family to know that so many people care about us. Bryan came back to the hospital and shared what an emotional experience it was and how loved Nick and our family is. It was a wonderful reminder we are not alone and comforting to know so many people are rooting for Nick and praying for our entire family.
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| Bryan and Jennifer |
Nick also finally got to enjoy Pet Therapy at the hospital both late Saturday afternoon and Sunday morning. He has requested it every time he has been in the hospital but they never got around to him. Then this last visit we mentioned it in passing to the nurse that we always requested it but never was fortunate enough to get it and not 30 minutes later in comes a dog. Nick had been quite down those few days and it was so wonderful seeing the huge smile that came across his face with those dogs. It was the best therapy ever!!!
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| Nick and Juniper |
Oh Nick I love that picture of you with that beautiful dog.What a great buddy. i have been thinking about you all this week. Here in Africa if you get cancer thre is not a lot they can do for you as there are no real cancer centers or medication to help you. So taday I am so very grateful that you live in the USA and in Utah where there is the best treatment in the world.
ReplyDeleteIt is true what they say that you are never alone. Our Savior, jesus Christ knows you and he knows what you are going through. It knows exactly what that pain is like you are having, the anger you have for getting the big C, the anger when things don't go right. He knows because he has felt that pain, felt that anger, felt that sorrow exactly as you have been feeling it. That is what is so comforting about knowing you are not alone. He really does know what you are feeling. He knows whooyou are, he even knows your name and when you feel down he will provide you with a comforter to ease your way through this adventure. I know this to be really true. You are such a great kid, talented, athletic and especially HANDSOME. You are first class and you always have been even when you were two years old in the Nursery at church. just way toooooo cute. So Nick you have people all over the world praying for you even on the other side of the world in DR Congo in Africa.
Hang in there buddy, you are not alone. Prayers work.
Elder and Soeur Barlow (remember us we are the ones that love you and think you are AWESOME.)