Haley’s Giggle

Today was the worst day so far taking Haley to the hospital. Not because the nurses made us do quite a few rounds of musical rooms, and not because they waited too long again to take her blood so giving her the Tacrolimus was late again. It was because of a patient I saw when we arrived. She had full-blown GVHD, and it was all over her skin. I wanted heartful hematologist to look at Haley’s new rash iteration, which includes her skin peeling off on her palms, some crusty red blotcheson her arms (small, but you can see them), and a rash on the side of her face, that is hard to make out except in the glow of good light. I have been worried that her rash is a form of GVHD, though I’ve been assured by the New York doctors on my last visit that it’s not. But I just have a sinking feeling. Heartful hematologist actually brought in a transplant doctor from down the hall. He has said that there are many viruses that cause what Haley has. Then he mentioned in passing that even if it was GVHD, it’s so mild, there’s nothing to be done about it now except to watch it. He then went onto explain how I should be applying aquafor or the like on her dry skin, but the letters G-V-H-D just echoed around in my head. I thought non-stop of that girl in the waiting room, with skin that looks like it was cooked on the sun. Her mother, I overheard, was hopeful that after a year, they would get off steroids. Now I know what the doctors and nurses meant when they kept saying “Haley looks so good.” Now I know what she can look like. And it look extremely painful. I do not much more right now than go online and try and find out all the information on GVHD that I can. Maybe we’re missing something. Maybe it is and there’s something to do about it now. The only thing I know that is to be done is to make sure the Tacro level is right, which they constantly test for.

There were no quests today, though Dana’s been trying very hard to come and see Haley. Hopefully she’ll be able to do it before I go back to work next week. Otherwise, she’ll have a nice visit with our new nanny (Kadisha from Morocco).

Funny moment of the day was when I told Anna (for a specific reason) that she couldn’t wear her cinderella dress, she responded through tears, “but I’m cinderella! I need my clothes!”