Transplant +3
Day 66
Transplant +3
This photo shows the rash on Tates face and head. It extends to her neck and chest and back. They’re not totally sure what it is but aren’t concerned at this point.
Mucositis started to set in today. Tate is vomiting blood and mucus as we think she has sores in her throat and stomach in addition to her mouth. Tate is no stranger to massive sized ulcers throughout her GI tract as it is the hallmark of her Behçet’s disease. We are told that although mucositis is terribly painful and miserable, it doesn’t hold a candle to the behcets ulcers she’s learned to endure as these will remain much smaller with no risk of perforation. We are relieved to hear this as I was picturing Behçet’s x 10. As she’s already been on tpn and lipids (iv nutrition) for a week, has a g-tube for the meds she can’t get IV, on a continual narcotic pump and pca for pain, we’re praying she’s in good shape to get through the next week or so. During this time period is when she should hit the worst points and then God willing improve from there.
Tate received a platelet transfusion overnight. Totally expected and “normal” during BMT. She’ll need more platelets and also blood transfusions as she goes through this process. Please donate! If you’re local, come donate platelets or blood at CHC. Most of those platelet donations come right up to floor 7 and the BMT unit.
Tates hair is starting to come out. You can see how much it’s grown in the past week. She had shaved it before chemo as it’s the only way Keira (Tate’s sister) could be part of the process. Tate also thought it’d be easier than watching her long hair slowly fall out. It was a great choice as even seeing the short hairs on her pillow is a little tough. It’s not really about the hair. It’s about what losing it and having no hair represents….the fight to live.
The anti rejection med, tacrolimus, continues to give Tate a little trouble. It was causing involuntary twitching and despite being reduced on Thursday, is still testing high. It was decreased again today. They’ll test levels again in s couple days. Tate is also retaining fluid, which tacro could be contributing to.
I could go on about all the nuances that are watched for during BMT. Transplant is the easy day. It’s everything that comes after is really the hard stuff. But despite the above challenges, Tate is doing relatively well. This kiddo has already been through so much, she’s already learned how to live one day at a time. That is the only way to get through this.