We did find out today that Clara will continue to be on immuno-suppressants for a lot longer than we had ever expected or hoped.
The bumps were definitely caused by GVHD as they significantly decreased with in a couple of days of increasing the dosage of her MMF. Their best case scenario was 1 week. Today, I was told we will stay at the 75% dosage for 3 more weeks and will probably stay on 50% for a long time after that (no specific number of weeks mentioned). This is really disheartening as it means we will be giving IV meds at home for quite a while longer.
Along with this news was the news that EBV (the virus that causes Mono) has gone from undetectable to 5,000 raw counts. Don't worry about the 5,000 number unless you know enough to know what that means. The point is that it had gone away, and Alan and I fear that as we are back on this higher dose of MMF, she won't be able to fight the EBV like she was apparently able to when we had tapered off to 25% of MMF just two weeks ago. The longer she stays immunosuppressed the less able she is to fight things like EBV.
Additionally, we think the MMF is increasing her morning nausea. She seemed to be getting better but is now consistently vomiting 1-2 times each morning. She seems fine and then is all the sudden vomiting regardless of how much I have fed her via NG. If she could only tell me she felt sick or that she was feeling full, it would be so much better. Or if she could eat on her own and chose not to eat at that moment because she was feeling ill or full. But until those days, we are having a really hard time getting her enough nutrition to keep her gaining weight.
That's the update for now folks.
Hope you are all doing well! We are loving our days at home. Thanks to Alan, I've actually gotten caught up on some doctor appointments for myself, and we made home cooked meals for most of the week last week. Of course, those days resultantly wear us out!
Anyway, it's all progress.
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