6/19/18 Day +48 GVHD

I know that I haven’t been updating as well lately, there is a good reason. My alone time is after Reese goes to sleep… and I have been going to sleep with Reese! I’m not complaining, I get to sleep all night next to one of my favorite little girls. But last night it was lights out for both of us at 8pm. She is up an average of 15 times each night, and her only stretch over two hours sometimes comes at the beginning, meaning if I want sleep, I sleep when she sleeps! It works for us, we are on the same schedule.
Reese is still in the thick of gvhd. I have been told that gut gvhd really doesn’t get worse than what we are seeing… so it’s helpful to know we’ve hit bottom and are seeing the hardest times now. It’s good to know that we are working through them together and there’s no where to go but up! We continue to be grateful that her gvhd is sticking to her gut alone, and that her upper gut seems to have resolved. An infection has taken over Reese’s mouth and throat, I have mentioned before that she can’t easily talk. Being as immunosuppressed as Reese is, combined with high dose steroids, leaves the door open to lots of opportunistic bad stuff. We are adding meds tomorrow and we hope we have gotten to the bottom of this problem. I can’t tell you how much I miss her voice! Reese is very clever. One of my favorite things about her is that she asks REALLY good questions. I love how her mind works, she is a deep thinker and so darn funny. I imagine not being able to talk is as hard on her as her gut gvhd. Time to get that under control, I hope to post a video SOON of her delightful little voice.
I am going to end with good news (the best news ever, actually.) It begins scary, there was some question about her WBC and ANC skyrocketing. My doctors have told me they have never seen it before, like this, from steroids. (That is scary stuff.) So they ran a second chimerism, to check if she is still all donor cells. They wanted to cover their bases, to ensure that Reese cells hadn’t somehow created the problem. On pins and needles we waited all weekend. I never really believed that was the case, but once you hear it, it is hard to shake. Tonight, we learned that Reese continues to be 100% donor!! And that’s what it’s all about.

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