One step forward two steps back…
Over the past day Reese’s “nausea” has escalated. She is a very sick little girl, our doctors have a theory that we are seeing graft vs host of her gut. How we should feel about this is very hard to explain, but I will try. And as this changes, as everything does, I will learn more and I will try to explain it again.
JMML is more persistent than other leukemias, the relapse rate is about 50%. We know this, it is the reason we are at UCSF, with the best in their field, the doctors who understand JMML the best. We knew going in that to beat JMML, we need a little graft vs leukemia to give Reese better odds for survival. Basically, we want the graft (donor cells) to go in and attack any leftover leukemia cells that might have snuck by. Now, those same donor cells can also attack other parts of Reese we don’t want them to- like her gut. So the doctors need to manage this with meds, specifically how strong the donor’s t-cells become. This is done with a medicine called tacrolimus (tac). There is a careful balance, an art really, to managing graft vs leukemia. If we didn’t see any graft vs host, the doctors likely would have used infusions of donor cells to induce this. They wouldn’t have done this for about a month, because they want Reese to be a little stronger before they start this battle within her body. A war- the donor vs her.
So what is happening with Reese today? We think graft vs host. Is this good or bad? Well, she is suffering, so that is bad. But it’s good because it tells us the war is going on (see paragraph above.) So what are the doctors doing? They are increasing her tac levels, which have been around 4 (and should be around 7.) The tac suppresses the donor t-cells, which they believe are attacking her gut. Tac was switched to an oral med (vs IV med) over the weekend, and because she has been sick, there is a theory that she hasn’t had enough, causing the t-cells to get the upper hand. They are also talking about starting steroids, which are used to treat GVHD (graft vs host disease.) GVHD is dangerous and not something we want… but like I said, it’s a balance and not easily controlled.
All of this is unfolding now, and my sweet little baby, who has been through too much, is sleeping. I pray she has the gift of sleep these next couple days while the experts all work together to find the rainbow through the storm. The rainbow being the elimination of JMML cells.
Picture: Reese wanted a picnic in bed last night. Her order? Cake and ice cream. (smart girl)
Well, when I offered her an avocado, her exact words were, “Don’t you have some birthday cake and ice cream somewhere?” Sadly, her enthusiasm wasn’t matched by her appetite, once plated she couldn’t take a bite. My little girl wants to be normal so badly. Soon enough, we will have a cake and ice cream picnic to celebrate two steps forward.