10/24/18 BMT Day +175 Two Wins and a Big Battle

The biopsies are back. When GI stopped in yesterday and told me they DID see GVHD my heart stopped. I could feel things spinning, no no no our acute gut GVHD battle is supposed to be coming to an end. When I saw the team later they explained that they expect to see “residual” GVHD in the biopsies, and we had to wait for the official report to try to ascertain if it was ongoing still. So that came back today. The team believes, at this point, that we are seeing residual signs of GVHD and that it is not currently active, meaning we can taper steroids again tomorrow, to 0.7. This is a WIN.

Reese goes off TPN TODAY!!!!!!! She has been on some form of TPN since early May when VOD hit, and complete TPN nutrition since early June. We have been weaning it and now it’s going off. This is a huge win, and Reese surprised everyone when she pulled a Nike- JUST DO IT. That should be the logo, it’s our approach. Just do it. How did we accomplish this in one week? Eating and NG tube feeds. She’s at about 1/2 and 1/2 and this will ebb and flow.. there is no wrong combination, the goal is off TPN, so her liver can start to heal. This is a WIN.

I’ve been discussing TA-TMA with the team, and trying really hard not to do my “own” research… GOOGLE… on this complication because I already know that it will be upsetting. This did not stop my researching VOD and GVHD, Reese’s other two big transplant related complications, but something is stopping me now. The doctors tell me that the therapy Reese is on works 2/3 of the time. We need Reese to be in this 2/3… we have asked so much of her so many times these past six months, here it is again. She needs to respond to this medicine. I asked what they are looking for… the TMA can affect the tiny vessels going into her kidneys (most often), her gut, and her brain (the least often) so they will be watching these vitals organs closely. Last night her blood pressure went up into an unsafe range again and she also needed blow-by oxygen because her levels dropped too low. She is retaining insane amounts of fluid, I’m sure you have noticed in pictures. It looks like someone took an air pump to her and just kept pumping. It’s all over, her bracelet that matches mine, Quinn, and my mom’s doesn’t fit, it cuts off circulation, and it was big not too long ago. I asked how long until we see improvement. I asked: days, weeks or months? The answer is weeks. Please say an extra prayer for Reese.

I had insomnia last night. I went to bed knowing that it was six-months since I went inpatient with my little four-year-old. I thought about her last minutes of freedom, which were caught on video, and I hear her say, “Mommy how many days will I be here? 1? 2? 3?” and then she says “4?” with a quaver in her voice, obviously reading my face. I think about all she has accomplished, all she has been through. When I do this, it makes me physically sick. Then I remind myself I am her mom, I am her rock. I chastise myself and move forward, because that’s what she needs me to do. And I would do anything for her. For all of them. That’s a blessing given to moms, that’s what we do.

So we have two wins today. And one new battle. Onward, my sweet little girl.

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