Post BMT Day +84
Day +84 post BMT
Today was a mix of Tate feeling pretty decent in ways she hasn’t for so long and also presented some new challenges.
The last couple days we were noticing what sort of looked like a rash, but really more mottling on her arms and face. With Tate’s POTS/dysautonomia symptoms increasing, I thought it was just that. This morning, Tate had a rash on her forearm and elbow crease. Within an hour, it was on her palm and hand. As we sat in clinic, we watched it spread across her arms, chest, tummy, face and neck. One of the more fascinating things I’ve seen in real time. It’s slightly raised and thankfully not itchy yet. It is unfortunately, Graft Vs. Host Disease of the skin. Skin GVHD can apparently do what it did and then fade just as fast and pop up again. We saw this today. The most perplexing part is she was already on methyl pred when she developed it. That’s usually second line treatment. We’ve added the first line treatment; steroid cream to slather on 3 times a day. It’s the consistency of Vaseline. Sticky and kind of a pain, but a temporary inconvenience if it prevents this from getting worse and prevents the need for higher steroid doses. Tate is already seeing “moon face.” One of the, hard on a teens self esteem, many side effects. We were supposed to start weaning Friday, but I’m assuming that will be on hold. They are also suspecting that Tate is developing lower GI GVHD. I’m really praying this isn’t the case. This can be a doozy and Tate needs no more issues with her GI system. Again, the current steroids should’ve prevented this. It likely means it’s a higher grade gvh if that is where we land. Not good news overall, but Tate IS feeling better with the steroids treating the upper GVH, that I’m still feeling hopeful we can get on top of this quickly.
The positives …..Tate wore jeans! First time in probably over a year. She rocked PT…played a little “hyper dash” which my kids loved growing up! She stood a few minutes at a time to play! Tates ultrasound showed gallbladder sludge with no obvious stones. The best case scenario of what was suspected to explain her elevated LFT’s and easily addressed with meds. And….we got to squeeze Andi’s neck. One of our very first infusion nurses 6 years ago. She works at a different department now still within Childrens. Oh, and Tate played BINGO in the studio and won a love your melon hat and 31 pouch. CHC has amazing prizes thanks to generous donors!
And the best…Drew came tonight to spend the night with us. Tate went to bed early with a migraine so I missed a photo of them together, but am so thankful for the time with Drew before he heads to Milwaukee for the summer.