Weekend update (Day +61)

Monday, May 29, 2023 · by John Lilly

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.

♥ 52 hearts

9 comments

John Lilly · Tuesday, May 30, 2023
The journey continues. Hoping for no rash in a few days and no leukemia in the Day +60 biopsy.
David Hornik · Tuesday, May 30, 2023
I feel good about both!
David Hornik · Tuesday, May 30, 2023
No offense to Zach but I’ve been to too many 5th grade promotions and Sam is the lucky one!
Gowri G · Tuesday, May 30, 2023
fingers crossed for June 10th.
Claudia Hung · Tuesday, May 30, 2023
Thinking of all of you and hoping for the best.
Andrew Korb · Tuesday, May 30, 2023
Amazing. Good word! Lots of love from crazy Florida!
Elizabeth Lilly · Tuesday, May 30, 2023
Glad to hear the rash is clearing up. Hope all goes well today!
Sean White · Tuesday, May 30, 2023
Glad to hear it was a really good weekend!
Grandma Howe · Wednesday, May 31, 2023
We are all hopeful that the +60 day biopsy will show zero leukemia, and that the rash heals quickly.