Weekend update (Day +61)
Things have generally been really good at home. Sam's feeling good and starting to eat more. He's had a growing rash on his whole body that's skin-based GVHD -- it became acute enough (but not painful or uncomfortable for him) by our clinic appointment on Friday that after a little bit of back & forth with the care team, we started Sam on a week or two of steroids. It's already improving, and we're hoping that it'll be gone over the next 2 or 3 days. It's been extremely interesting to be on an early clinical trial that's being run by a doc/scientist who's at the institution we're at -- as patient #11 on T-allo10, we're spending a lot of time talking with Dr Bertaina every couple of days. It's amazing to see the science & medicine develop at such a personal & human scale, hopefully for much broader deployment soon.
Separately, the team is hyper clear that for the next month or two, Sam can't get any unneeded sun exposure, as that tends to aggravate GVHD -- so he won't be able to get to Zack's 5th grade promotion on Wednesday unfortunately, but we'll FaceTime him in.
Tomorrow we go in for Sam's Day +60 biopsy to look for any sign of leukemia -- we'll expect those results by around June 10. Hopefully we'll see zero again.
Happy Memorial Day to all -- hope you're having a great long weekend.
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