Tristan had his stem cell transplant on Thursday 11/10/22. He was admitted a week prior for “conditioning chemo”. They put him on isolation for three days to rule out VRE and MRSA which means he can’t leave the room. This is an out dated rule that we need to advocate to change. It’s ok for us parents or visitors to go in/out room who could have this. It’s ok for him to travel in the halls for tests multiple times a day…. Yet otherwise he couldn’t walk when he should have been gaining strength. The mental health impact of isolation also sucks.
He underwent 4 days of twice daily total body irradiation. He was woken up for this at 6 am and 2 pm. The IV pumps beep all night long so there was no sleep for him or us. After they got his nausea under control he had a few good days.
About day 6 after transplant his mucositis started. Mucositis is a complication of some cancer therapies in which the lining of the digestive system becomes inflamed. Often seen as sores in the mouth and throat, it is extremely painful. He’s now at the point he can’t eat or drink and we are having difficulty managing his pain and nausea. There is a pain management team involved. He is now getting IV nutrition called lipids & TPN. He is on an IV pain pump called a PCA. He gets Zofran and Ativan to help decrease his nausea as through out his hospital stay so far, he has been vomiting and having diarrhea. He was up all last night due to unbearable pain so the medical team added another IV (he already has a double lumen PICC) and started Ketamine, more Ativan and he's on a Dilaudid PCA pump. This is all normal because he is now neutropenic and the treatment killed not only cancer cells but all cells. The hope is that the new transplanted cells will take over during the next two weeks and he will slowly recover. He is developing a low grade fever so he will get blood cultures to rule out infection.
He can’t walk at this point. He is very grumpy.
He is being monitored for GVHD (graft vs host diseases). There is more description here of acute vs chronic GVHD for those interested in learning more.
So we are in the hard part. We decorated his room with Christmas lights and friends sent him a Christmas tree fully decorated! He can’t really talk now but he can text. He loves Amazon gift cards and Newbury comics gift cards. He’s hoping to get enough to get an electronic drum set from Amazon which is expensive.
Matt and I continue to take shifts at the hospital which helps keep us sane. In many ways this has brought our family closer together.
I’m still working and I don’t want patients to be afraid to see me or talk (or not talk) about it. We are a family practice and your patronage means the world to us. Please don't hesitate to make an appointment and I just love seeing you all!!!
If you are looking for ways to help support us, thank you we greatly appreciate it. Some ways to help are:
Nice messages bc we love u
Meal train (we have another child at home and I suck at cooking & have no time to shop)
Purchasing gift cards to Skin Esteem Med Spa & Wellness Center (our gift card special starts next week)
Gift cards to Amazon so we can get his dream gift for Christmas (which he will be in hospital for likely Thanksgiving & Christmas).
Cases of Desani or Aquafina water, Propel water, and Gatorade as he can’t drink tap water for a year.
We are so grateful for all your love and support!