Haley’s Giggle

So for all you counting days, yesterday’s enrty was not just day ten, but it was also day 11. So today is the 12th day.

White Blood Cell Count: 0.3

Her count increased by 0.1, which is another step in the right direction. It does not yet mean that the transplant took.  And I’m told by the doctors that watching the count go up and down every day will drive me crazy. Which it already is.

After a restless night, and lots of vomiting last night and throughout the day, we find out that Haley has strep throat. The culture taken when she was in the PICU came back positive today. This of course is not the greatest of news. The only bright side is that the PICU that culture on Friday, and has not shown any symptoms other than a small fever here and there. 

The attending who has taken care of her on a day to day basis had his last rounds today.  He was as always very affectionate with Haley and was very sad to be off his rotation, because he really wanted to see her case to the end. As he walked away, she flapped her arms, as she had done to him the first couple of days in the hospital. She hadn’t done it until this evening. He said his world was complete. I believe he was exaggerrating (I hope he was exaggerrating), but I believe it made his week.

Trying to calm down the vomiting, the doctors gave her the anti-anxiety medication, which they had stopped after the chemo. She’s stopped vomiting, but was competely off the wall tonight. It’s nearing midnight and the girl has slept two hours all day.

Hosptial Services today were huge: First we had two clowns from big apple circus sing “Haley Butt Paste” (I helped them a bit with the lyrics). Then it was OT, then a few volunteers who freed me up to clean the room a bit (in an isolation room, there is ALWAYS something to clean). Dance Therapy was today as well, though the regular therapist was out sick. It was her supervisor and the intern. I don’t know how the supervisor did it, but she found yet another one just like her.

Guests today were: Savta and Uncle David. They also spent time with Anna today, and took her to FAO Schwartz. Knowing Anna, who’s spent many an afternoon in the Smithsonian, I bet she thought the stuffed animal section was the museum of natural history.

Funny moment today was hands down when the dance therapy supervisor introduced me to the intern, who then talked and acted just like the supervisor.

OK, So I wrote how there is a white blood cell count, and that means it for sure engrafted (i.e. the transplant took and is starting to make new cells for Haley). After speaking with the doctors, I know a bit more.

The white blood cell count is at 0.2 (which actually means 200), which means that it went up. At this point, it means that there’s hope that the transplant was a success. The counts can also go up, then go down, and toggle a bit before they go up and stay up. The hope is that they ultimately just continue to rise.

There is a chance (a 20% chance) that this count will ultimately fall down and never rise again, indicating that the transplant did not take. But hope is here today. I won’t worry right now about tomorrow. Although it is 1 a.m.

BUT, for the past two days, she seems to have turned a corner. She’s smiling more, she’s more playful and interactive, she’s laughing a bit more, though no full on giggles just yet. And except for the vomiting, bad case of the runs, and a diaper rash so fierce they’re treating it as a second degree burn, she seems to be doing a bit better than two days ago in the PICU.

Yesterday’s guests were: Uncle Pretty (my brother Daniel) and his girlfriend Carly, Carrie, Heather, Aunti Lori, Auntie Jojo, and Uncle Dave. Gramps continues to be on the homefront, as well as Uncle Lenny and cousins Sam, Jonah, and Alex. And while I’m here mentioning them, I just wanted to say that this was a huge undertaking– letting your sister and her family move in for 3 months. I just wanted to say everything is greatly appreciated. I am sorry Alex is now wearing earrings. And pushing around the stroller. And putting on fake lipstick. You did know about the lipstick, right?

Today was as good as day as yesterday (so I’ve been told. Ranan was here, as was his mother, Savta, brother, Uncle David, and Auntie Jojo). Just as interactive, and playful, smiling, almost laughing. She even slept two hours. So, I keep the hope that these miniscule count makes a steady climb upwards.

I just want to say this. While I’m thrilled being back on the floor (in a regular room, though they switched her room, so I have to now redecorate her windows and now the question becomes do I still put “Haley Madness” on the door with only a week to go), I do miss the round-the-clock care of the nurses. It is now the 9th time I’ve muted her machine that keeps going off (it’s quite loud), and I won’t go to sleep before the nurse comes in, otherwise I’ll just have to jump out of bed.

Tonight it is a bit hard to breathe with the mask on. And these gloves make typing and using a touchpad pretty impossible.

Funny moment of the weekend was either Uncle Pretty screaming “butt paste!” at Haley because it made her laugh, or Uncle David whose stooped very low and put pretzel sticks up his nose to get a laugh out of Haley. She was intelligently nonplussed.

Make that the 10th time the alarm has gone off.

This morning, the doctor came in to tell us that Haley has a white blood cell count. This means that the transplant is taking. I’ll explain more about what the numbers are, what they mean, what the big picture is, etc. But this news couldn’t wait until tonight when I do the nightly report.