Haley’s Giggle

Hemoglobin: 10.1

Platelets: 227

Today’s hospital visit was the smoothest thus far. Heartful hematologist of course makes things always much easier, and he was there today to check on her rash (we also come in every other friday for an infusion of pentamidine).  The pentamidine was ordered before we got the the infusion room. And the coordinating nurse was there so I was bale to introduce myself and talk about Haley’s case. Even though we were there for almost 4 hours, it was I think as quick as it’s going to get.

It’s hard to describe Haley’s rash. First, she’s just peeling on her palms, so it doesn’t look like anything other than she’s healing from something. The other stuff– if you saw it on a healthy child, you wouldn’t think anything of it other than her skin is allergic to something it contacted. It’s not even that pervasive.  But it doesn’t look normal. And when one things heals, something else pops up. There is still nothing to do at this moment (aside from adjusting the Tacrolmus levels that work to keep the GVHD at bay) but watch it closely. So I watch, and ask a lot of questions. I can’t really go online for something like this, because every case is so different. Plus, things on the web are terribly distorted: GVHD pictures will be of the extremely severe cases, if at all.   

Guests were: Uncle Pretty, Carly, and Dian.

Funny moment of the past two days was putting Anna to sleep. She insisted on wearing her Cinderella dress- her most prized possession– to bed, because I just let her wear it again for the first time in a week.

Hemaglobin: 10.2

Platelets: 217 (now officially the fun number to report)

It’s been 3 weeks since we’ve come back to DC. Haley is still on an island, but a newer bigger one, where the foreign microbes are harder to check at the door, and sanitizing the entire apartment everyday is more than just a household chore.

But then there’s Anna. For those who have met her and gotten to know her (with or without the cinderella dress), you are fully aware of her dramatic presence. She’s already larger than her own 3 year-old life.  You will never need to ask, “where’s anna?” because if she’s not in your sight doing something flambouyant, then she’s easily heard doing something flambouyant.

This makes for great entertainment for Haley, who is not really allowed to socialize with any kids her age yet. Anna perfoms; Haley reacts. If we are all sitting together watching “The Little Mermaid,” and Anna starts singing, Haley will mimic the singing. If Anna tries to make her laugh, either Haley will indeed laugh or make another expression. They are sisters, and they are working out that relationship. But is already clear that they are friends.

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!”