12/12/18 BMT Day +225 What exactly is graft vs host disease

I knew that Reese was ready to go about two weeks ago. That is when she started insisting on wearing only dresses and skirts again (and being incredibly offended by the idea of “pants”.) That’s my Reese. And I wouldn’t have it any other way.

A medical update:
Reese’s albumin dropped to 1.8 over the weekend, and stayed there. This is below the “2.0” threshold. So she was given albumin… and then it was tested again, and it was 1.8. Her body seems to choose a level and just waste the extra that she is given. So she is NOT getting albumin this week. We are watching her closely for signs of distress from this lack of protein and we aren’t seeing any. So it’s kind of a watch and wait… her next labs are tomorrow (remember, we went to 3x a week labs a couple weeks ago.) The consensus is, if Reese’s body can handle 1.8, it can. I don’t know what the doctors’ thoughts will be on less than this, and I’m still praying that her gvhd continues to heal to resolve this problem.
Speaking of gvhd, this is still a problem for Reese. Aside from the albumin giving us this information, her t-cells seem to tell the same story. Let me take a step back and remind you what gvhd is (the second grade version, since that’s the grade I taught, and frankly the extent of my knowledge of all of this!) The following is my personal understanding of Graft vs Host Disease, which is defined by it’s name. The graft (donor cells) are attacking the host (Reese) because they recognize that her body is “foreign”. Now, you know that Reese had a 12/12 unrelated donor, and a 12/12 is the best you can hope for, in 2018. But, there is still a lot that isn’t known about HLA typing. It is possible that someday soon, when research tells us about a 13th or 14th marker that matters, we would learn that Reese and her donor actually had some important differences. This could be one reason her gvhd was so bad.
In transplant, an attempt is made to remove mature t-cells, transplanting only the “babies”. This is because the babies (young t-cells) haven’t learned the donor’s body, yet, and will have an easier time accepting Reese’s body as their own. Well, inevitably, a few “teenagers” sneak in and are unruly troublemakers. These older cells KNOW that Reese’s cells are foreign and attack. (You would see less of this if you had a related donor.) Now you have gvhd. (And these same cells attacked her cancer cells and took those out at the same time. The blessing, and the reason an unrelated donor can be preferable for JMML. I digress.) Anyway, the doctors can look at subgroups of these t-cells to see what’s going on. For example, CD4 t-cells are the quarterbacks (I got this analogy from my doctor and I like it.) They give instructions and keep all of the CD8 t-cells in line. The ratio should be pretty even (or you want more CD4s.) Well, Reese has 155 CD4s and 1,178 CD8s right now. We want this to start to even out and it’s not, yet. This is a sign of gvhd. BUT, her symptoms are substantially better, basically nonexistent, she seems “cured”. Until you look more closely. So what are we doing about it? We know that acute gvhd will eventually burn itself out. We also know that her immunosuppressant taper will be very delicate and so slow, to keep her safe from a flare. Where is the silver lining in the t-cell report? Her CD4 t-cells are GROWING! We kept them almost completely suppressed with steroids and now they are up to 155. These are the reason her CMV is consistently negative and these will be the reason she will eventually be able to go off isolation (though not for some time still.) Grow cells, grow!

From Father Dan, our spiritual guide:
For All the hard-fought Victories of this past year, we Thank You, God. For the wisdom and dedication of Reese’s doctors and Medical Team, we Thank You, God. For her Amazing Family who surround her with so much Love and Joy. We Thank You, God. For the incredible Support shown by so many friends and neighbors on this journey to healing, we Thank You, God. And most of All for REESE – this “pint-sized little blond who loves God, rainbows and the color pink”, we Thank You, God!
We can’t wait to watch her “RING THAT BELL”…

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