It has been a while since the last update, but honestly (and unfortunately) not much has changed. Sam remains in the hospital with Graph-versus-host disease (GVH), as the docs try to figure out whether the current treatment is making progress to fix it or not.
On the plus side, his overall demeanor has improved since he was first admitted. The skin rash and upper GI problems (vomiting) have eased up, and with that came the ability to eat tiny portions of food, stay awake a little longer, and go for short and slow (but much appreciated) walks on the floor and get a break from the room (aka "tiny house").
However, this bit of progress was hard-earned and honestly very difficult to celebrate since Sam is still so uncomfortable with the other lower GI symptoms he is dealing with due to the GVH. As of yesterday, his blood counts have fallen, which could be from the GVH and/or its treatment, but we might need to do another bone marrow biopsy this week to rule out that the low counts are caused by relapse of the leukemia. I don't know what to say about that and frankly don't even want to think about it so I'm just going to put that there and move on.
Emotionally, I think we are doing the best we can given the circumstances. Needless to say, Sam is going fairly stir crazy now that there is snow on the ground and there are not skis on his feet. Also, this has been one of the scarier stretches we've had in the hospital because of his overall condition and seeing such minimal improvement. Each night, we'd talk about what could have been considered better or worse that day for a while, until they eventually advised us to change from watching for improvement day-by-day to looking for trends over four-day stretches. It's setting in that even once we see the improvement we need to, it will be a very long road until those skis are back on Sam's feet.
As for me, I've been doing all I can to help keep Sam's spirits up and remind him that if anyone can conquer this, it's him: his soul, his determination. I have also been preparing for #30forsam (check out the hyperlink if you don't know what that means!), which is a great way to sneak away and address my stir-crazyness so I don't bring any of that frustration back into the room with me when I am with Sam. I've also been trying to teach myself that this cancer and GVH thing doesn't follow calendar years, or take breaks for Christmas, or ease up when winter break ends and it's time to go back to work. It just is. Day by day, little by little, it will get easier but progress takes time. I haven't quite mastered this serene peace of mind yet, but I am working on it and that will have to be good enough.
As always, thanks for the vibes and for sharing all your #30forSam plans with us.
Love from UW,
Jenny & Sam