2/10/19 Day +285, 52 days since Reese rang that bell

“Do you know why I am so fast? My new cells are faster than my old cells.”
Reese classifies everything as before she got new cells, and after she got new cells. We were looking at videos today, videos of Disney World. Her first question, “Is this before I got my new cells?” We went exactly two years ago, and it has been a hot topic around here, as we focus on life beyond this treatment. There are big holes for Reese, since she “got her new cells.” She knows this. What’s interesting is how sharp her memory is about beforehand… it’s like time was frozen for her during the worst of it. It always surprises me. What is missing is most of June, July, August, September, and part of October. She has memories of her sisters flying out in late May, her family “Team Reese” coming to the hospital. That was just before her severe gvhd hit. Then she remembers Halloween well, and that was just as she was coming out of the fog. Of course there are pieces that stuck, you remember we tried our hardest to give her “five minutes of joy” during these hard months, in the hopes that it would take the place of a bad memory. And some of it did. But most of it is a blur. Thankfully.

We have discovered a pattern with Reese that I am eager to understand. Let me back up. Reese has been feeling GREAT. She is eating, playing, “walking fast” (it’s those new cells…), requesting to go to the zoo to see the flamingos most every day (no zoos, obviously. For now.)
Then, like clockwork, between 11am – 12:30pm severe pain hits. It’s bad. It lasts 2-3 hours, and then poof. It’s gone. The rest of her day (and night) are fantastic. She sleeps 11-12 hours. There is no inbetween, either she feels great or it’s noon. There’s a kicker. If it doesn’t go away, it spirals out of control. About 8 hours later, if this continues, it leads to the crazy sick, vomiting and finally, giving her a stress dose of hydrocortisone. (And within minutes of this dose, she’s better, fine. This has happened three times.) Why? Well, remember Reese’s adrenal glands are shut off. It will take months to teach them that they need to work, because she was on high dose steroids for SO LONG. Well, when we are sick, our adrenal glands kick in and give us the boost we need to “fight or flight.” Reese doesn’t have this. It’s confusing and so complicated. I need a crash course in endocrinology 101.
But what starts this cycle, between 11am-12:30pm? This two hours of pain. Could it be one of her morning meds? That’s all I can think of, but I don’t know. We need to solve it. The pain is devastating, and right on schedule. I am very hopeful we will get to the bottom of it asap. It is so wonderful that she is feeling SO GOOD, a blessing, she is back and she is fierce. Let me tell you, my little alpha is a riot, a true joy.

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