Day +53 | Stem Cell Transplant
To most this doesn’t look like much but this boy ate THREE bites of lays chips & four or five goldfish today 🙌🙌🙌🙌🙌🙌 (chemo drugs really mess with your taste buds even months after and he already didn’t have much of an appetite anyways being in kidney failure, so he gets nightly feeds for nutrition)
GVHD rash seems to be better. This 👏 IS 👏 GOING 👏 to👏 go 👏AWAY!! Over 60 hours in on steroids. By morning I’m praying and CLAIMING this to be much better. 🙏🙏🙏
We don’t do much, we avoid the sun (can cause gvhd flare ups), we can’t go in public at all, he’s still in step 2 stem cell diet (he is counting down the days he can have a LARGE cheese pizza from CPK), we also don’t go out in RMH at all, if he leaves his room he has to has a n95 mask on and we really don’t want to stress him in anyway. I’ve stopped working his legs so much & not focused on him walking for now only bc we have the rest of his life to do that, right now we just need him to rest, let these cells rest, & focus on rash going away. I did get him a booster chair with a tray to sit in that seems to help.
Kruz & Paizlee still somehow find a way to have fun in a tiny space.
Some days our “fun” consists of watching people out the window walk their dogs, or run or ride by on scooters...it’s BEAUTIFUL here today ☀️
I posted in my IG story the other day, that some days your simply grateful for a new view.... not a hospital view, but a view outside our RMH window of a beautiful blossom tree.
Being here grounds you. It makes you thankful for the smallest stuff you used to take for granted. It makes you realize nothing you used to “worry” about matters, being here is what matters... so find joy there. Enjoy your life where you are. 💜