Haley’s Giggle

Hemoglobin: 10.8 (down from 12.8 earlier this week)

Platelets: 177

Tcells: 289

Helper T cells: 84

B cells: 279

Haley’s rash seems to have diminished somewhat, and is really only visible on the stomach. The skin on her palms is beginning to crack, but apparently that’s consistent with a virus. It’s also likely that she has at least one of her stool infections back, but so long as it’s not GVHD, it’s all good news.

The rash diminishing, even just a bit, is good news because that means we don’t have to make a trip to New York this week. Not that I minded (those who know me well know I love to drive), but it’s tough to drive for 4+ hours, then wake up extremely early, spend most of the day at the hospital, then drive back the next night. It’s not bad once a month. Once a week would be tough. Of course, I’ll do whatever is needed to give Haley the best care.

Today was just checking her rash, her Tacrolimus level, her Tcells/Bcells, and her kidney and other blood functions. Her Tcells and Bcells have started a showing (before they seem to think the numbers weren’t accurate, but now they seem to believe the reading). That is a good sign. What I don’t know is the significance of thos numbers. I’m really upset with myself about this– I have yet to really understand what level her T and B cells correspond to: what infections she can fight off, what she can’t, what the levels mean at this point. I also have yet to really verse myself in the red blood cell arena, and I don’t know when that red blood cell hormone will kick back in, if at all. Heartful hemotologist gave me a good briefer on the feedback system, and the role of the hormone in relation to the bone marrow’s ability to produce red blood cells, but I need to know for myself, so I can better understand, so I can help Haley better. I feel even more powerless without this basic knowledge.

Today’s clinic visit went as smoothly as I guess it is going to be. Anytime heartful hematologist takes charge, it goes pretty well. I’m going to have to learn how this system works just as well as I do the red blood cell feedback system.  Should be an interesting journey into both.

Guests today, and this week, were Savtah and Sabah, who have stepped in to help clean and take care of the kids while things still get squared away. Anna also spends a couple of days a week with Dana, Mel (Miss Mel), Cov, Ellie, Jess, and Derrin (the last four being Dana and Mel’s kids), so we’ve been a guest in their home.

I do want to remind people (politely now, less so if you’re holding Haley) to please remember that if you visit, please leave your shoes by the door, and then go to the bathroom to wash your hands. I will remind you when you’re here, and I will also put a sign on out door from now on. It’s easy to forget how sanitized you have to be. It’s OK; that’s what I’m here for.

Funny moment of the day was the mood change before Anna put on her Cinderella dress and afterwards.  The other funny moment was Haley suddenly noticing the hospital’s Mascot on every picture, pamphlet, and poster, and talking to it (it’s a stuffed bear animal).