6/6/18, Day +34 & +35 Why GVHD?

As many of you know, tomorrow was Reese’s discharge date. Last week the team started tapering meds and moving IV to oral, in anticipation of this date. But, in the BMT world, things can change overnight and you can’t really count on anything staying the same until it is happening. Well, things have changed. Last night one of my doctors estimated an additional month for my little girl.
Why? Reese has officially been diagnosed with GVHD of the gut. Specifically, her new CD3 T cells and CD8 T cells (lymphocytes) are growing really well. They are multiplying quickly, especially in areas where a lot of immune cells live (places where bacteria is most naturally found, and needs to be hunted, like the gut and skin.) These cells are attacking Reese’s gut because they don’t recognize it as their own… yet. I find the reason for this really interesting (and I’m going to try to explain it, sorry if I mess it up, I’m still learning…) A cell has a lifespan. When a donor’s marrow is collected, a machine filters out the youngest marrow cells. The babies. These cells haven’t learned the host’s body yet, and can more easily learn “Reese”. Well, a few older cells sneak by, and these cells have been around the block long enough to know that Reese is foreign. Then they cause trouble. (Interestingly, this is the same reason that Reese will be counting on herd immunity when we leave here. She is no longer immunized to, anything. But her donor was, so how can this be? The same reason… the “baby” bone marrow cells never “learned” to be immunized. It is passed down from cell to cell. (I picture a camp fire, the elders passing down their ways to the new whipper snapper cells..)
So what does this mean for Reese. Her NK cells are also growing well (JMML killers) and the same cells that are attacking her gut are also seeking out any rogue JMML cells and killing them as well. This is the most important thing!! But she is a very sick girl right now, as this war rages in her body. All of the drugs she was weaned off after VOD (steroids & pain killers) are back on board, supporting her little body through this war. It’s a careful balance (an art) to keep the GVHD under control, just enough to kill the leukemia. She is kind of losing this battle, to win the war. The JMML war. The lymphocyte cells I mentioned in the paragraph above are the cells that her doctors would have infused into Reese in a month or so to induce some graft vs leukemia. As one of my doctors put it, she was sailing through this too easily for JMML. With a world-wide relapse rate for JMML lingering around 50%, every step of BMT is aggressive. This is one of the aggressive treatments that brought us to UCSF, to give our daughter the best chance possible. Well, now that her lymphocytes are doing this on their own, we KNOW that graft vs leukemia is happening, on it’s own.
This new battle is necessary, which doesn’t make it easier for my little warrior. I find it incredible that she was up sick 25 times last night, horrible cramping, her lining of her gut just shredding itself, and she never complained. She has accepted this life, this painful process, and she does it in her Reese way. If only I could take an ounce of her pain, she has so much.
The big question that remains in this chapter of Reese’s BMT is, how mild will this course of GVHD be? Right now it is not severe… I pray it stays that way. Just powerful enough to kill JMML, not an tad more. Please join me in this prayer, as our killer doctors do what they do best.
Quinn is at the hospital with me and Reese today. Reese wanted to “watch a movie with Quinn.” She can hardly stay awake, and when she is awake she is pretty sick, but it gives her comfort to have Quinn nearby. Quinn put it best, as she finished the movie alone while Reese restlessly slept next to her, “I just really want Reesey to be well again.”

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