5/12/18 BMT Day +10 VOD

Every day is a day closer to engraftment! Yesterday we saw a little 0.1 pop up on her CBC for White Blood Cells- and it has stayed! (so not 0.0) This might be the beginning of the impending engraftment (that typically happens somewhere between 14-28 days.) I will let you know as soon as we see something similar for her ANC… “engraftment” is 3 consecutive days with an ANC over 500! (Right now it’s 0.) Her ANC is her immune system, the neutrophils that kill off invaders like bacteria. Grow cells, grow!
Reese continues to battle VOD, her symptoms are “stable”. So not getting worse (thank god and the doctors) but not getting better either. We need to give the defibrotide time to work, and we know it takes a few days, so as long as Reese remains stable and out of the ICU, we feel that we are winning. My little powerhouse of a girl worked hard today to do “her part”. She likes to help herself get better, and she will do just about anything to be that helper. Today we asked her to take meds that don’t come in IV form by mouth and she did it, multiple times. It was really hard, she can’t swallow. But as soon as I say, Reese this is how you help the doctors, this is how you do your part, she says, “READY” and makes it happen and surprises everyone (but me.) The same is true of sitting up (very difficult with her distended abdomen) and deep breathing. The fluid has traveled to her lungs, so she had to do things that were very hard today like deep breaths. Yes, the beach ball came out, and yes she raised it above her head, like that tough girl that she is, and threw it to mommy. She also had to get an IV (her worst nightmare, she hasn’t had one since her central line went in.) The VOD meds are constant and the doctors decided she needs a separate lumen for them. She was a champ, so brave, facing one of her biggest fears after such a hard day.
Clinically, Reese looked much better today than yesterday. The doctors said this is the best sign, even if her testing doesn’t show it, yet. Please continue to pray for a smoother course for my little girl, for more “to be expected”. Thank you!
Pictured below- I put the “Rock Reese’s Socks” FB page on Reese’s iPad and she got so much enjoyment going though some of the pictures today! Thank you to everyone who bought socks to support JMML research and then posted pictures! It will take her awhile to get through them all, right now she fatigues quickly, but she loves them so please keep them coming. She comments on them with her choice emojiis. 🙂

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