2/3/19 Flare of gut GVHD?

A quick update on Reese.
We believe that she is having a flare of her gut gvhd. It breaks my heart to write that. But, I am trying to be optimistic that we will get to the bottom of it sooner rather than later, and she will not take too many steps backward.

Last night, her CT scan showed inflammation in one part of her small intestine called the ileum. When it was compared to her November scan, they saw that it is in the same place as before AND it actually looks a little better than November. In the flare world, this is good news. It’s not new and slightly better. There are many unanswered questions… the leaders are: Why did this happen and why did this happen? We don’t know if this was kick started by a virus or if it was from her immunosuppressant taper. If it is the taper then what medicine is the culprit? This is a big question. I hate the idea of going backwards and the doctors will be meeting over the next couple days and they will decide a course of action. Because there really is no way to know. For now, as I mentioned before, her budesconide is back on and that’s the only change we’ve made so far.

This morning, Reese woke up feeling great. I think it was because her daddy stayed over, he has that affect on her. I came in the morning with her sisters and we had a lot of fun together. Around 1:15 the pain hit… and it hasn’t gone away yet. She is pretty miserable. Interestingly, no nausea. A gift.

Reese is really proud of her name, she loves it. She calls herself Reesey Piecey and when she’s being really sweet, she calls me “Mommy Piecey” as a term of endearment (one of my most favorite.) Right before she left the BMT, she added to her name, making us all call her “Reesey Piecey Flamingo.” It’s pretty cute. Anyway, tonight she told me her new name is “Pain Piecey” which broke my heart. She said that she doesn’t know how they will make this pain go away?

I pray that God gives our incredible doctors the knowledge they need to solve Reese’s flare and get her back on track. Last Friday, interestingly, was her BEST DAY EVER! Well, since transplant. God, can we please return Reese’s health to last Friday, and then up from there. Amen.

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