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).

I hate when blogs start with the author explaining why they haven’t written. Instead, I will just say that I will be making biweekly blog entries.  I will definitely blog when something happens as well.

Getting back into a normal routine has still be posing challenges. The biggest challenge I think will be streamlining Haley’s care. I was told that theoretically, it only takes 10 minutes to prepare the pentamidine (that’s the anti-pneumonia prophylaxis), and then an hour to administer. It took us about 6 hours from start to finish. I also have to make sure that everyone knows when specifically we are coming. What they really need is a patient coordinator, like they have up in New York.  That person not only has it in the system when Haley is coming up, but all of her blood levels. She also makes sure I have had my cup of coffee in the morning. Not part of her job; just cuz.

I took Haley up to New York a week before her monthly check-up. During the week, but especially at the end of last week (friday and saturday), Haley developed a body rash.  Rashes are the first sign of GVHD. I was watching this rash grow bigger and bigger and it morphed into different appearances. It started it on her face, then went to her tush, then her torso and back, then her arms. The characteristics ranges from raised bumps to red blothces.  I don’t know how GVHD manifests itself, but I wasn’t about to guess on this one. I tell you, as a parent with a healthy child, your imagination runs wild the minute your kid has a weird sounding cough. Rachet that up about a million notches when your kid has no immune system. Luckily, I’m allowed to be as neurotic as I’d like. And I’m glad I went up too, because they took it as seriously as I did, and didn’t dismiss it just because it didn’t appear to be GVHD. They took full blood tests, and were looking for viruses that could be causing it. In the meantime, I’m paying attention to every single raised bump or blotch, no matter how small or faint.

They said that if the rash doesn’t go away by week’s end, they would like to see us again next Monday. I will of course do anything for my girls, and anything to make sure this thing is nipped early.  But I will tell you.  Since she can’t go on the train or on the plane yet (too germy), driving for over four hours only to hang out in a hospital all day only to turn back around. Luckily Gramps was in the car to keep me company. And luckily, for the most part, Haley was a smiley giggly trooper.

While I didn’t like why I had to go up to New York, it was so refreshing to go back to that process of getting treated. We were an add on, and there were no empty beds, but the nurse who took our IV made sure that we were taken care of. I miss how efficient things are. I miss the attention to detail by the nurses.

I wouldn’t trade heartful hematologist for the world, but it was definitely nice to be treated by the new york nurses for a change.

Guests have been Grammy, Gramps, Savtah, Aunt Jeanette, Uncle Neil, Aunt B (in NY), and Aunti Lori (in NY).

Funny moment of the days was when I left one time, I told anna I will be going out for a while. Her response: “I guess I’ll go to the [cinderella] ball all by myself.”

I hope you all had a happy Fourth of July. For the occasion, Haley developed a rash that covered from her tushy up her back. I called the New York hospital, and they asked me to take a picture of it. So naturally, I used my camera phone. I’m sure a regular camera would have captured the patchiness of the rash much better than the itty bitty camera phone, but I think it got the point across.

 Tomorrow– or today, rather– is Pentamidine day, but I’m also hoping to talk to at least one head nurse.

 There were no guests today.  Though I did get coffee with a friend (thanks, Shan!).

Funny moment of the day was when there was a fire in the building and Anna looks up at all the firemen and firetrucks outside and says, “It’s a wonderful night!”