6/17/18 Day +46 Steroid Refractory GVHD

This roller coaster of a BMT ride is not improving. Today we received some good news and some bad news.
The good news:
We think the upper GI gvhd has resolved.
There is currently no liver or skin involvement.

The bad news:
The docs believe Reese’s gut gvhd was a grade 4 at one point (the worst) and is a grade 3 right now. They believe it may be steroid refractory (does not respond to steroids) which is NOT to be expected and very unfortunate. There is hope the steroids are doing something, so she will remain on a lower dose for now. She is on a secondary medicine and there is discussion of us also joining a clinical trial to receive another medicine. I am very sorry to report this, my heart breaks.

Reese’s steroids were brought down slightly yesterday because she is on too high of a dose to maintain. There was also a theory that this would bring down her WBC and ANC counts that were still rising. It worked, and they came down slightly (though still extremely elevated.) There is some good news here as well: her platelets and hemoglobin have held at healthy levels throughout.

What does all of this mean for Reese? Today was a horrible day. She is in pain and non stop getting sick. Every 15-20 minutes. My little girl is suffering. We are told this could take months and we really hope that isn’t the case. Things will go up and down and we need more good than bad so that the bads don’t dip so low.

Today was Father’s Day and there were some sweet, tender moments mixed in. I’m so glad my family was together. This was special. My girls were together these past two days and Reese and Quinn found a way to play. This has been difficult because Reese isn’t able to talk very much right now. There is an ipad game, My Town, that you can play with TWO fingers at once. This is perfect for twin 4-year-olds, especially when one of them can barely lift her head. We found a princess game and they played together for hours these past two days, just like they used to. Technology came through for my little girls and they were able to interact the way only they can. Again. It was beautiful to watch their happiness and connection. Pictured below.

I’ll keep you updated, I go to bed praying on my knees for wisdom for the doctors and relief for my little girl.

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