Back in the Saddle Again

I guess being back in the saddle is generally supposed to be a good thing. But sometimes you’re saddle sore and tired of the dusty trail and you’d just rather be in your bedroll, hunkering down for a good night’s sleep under the stars. Or back in your cozy little home on the range, watching the deer and the antelope play in your backyard.

All right, enough with the western metaphor. We’re back in the hospital. And it sucks.

But let me back up. On Monday, we had a consultation over at Dana Farber with this guy who is, like, one of the world’s leading experts on childhood leukemia. As I mentioned a while back, some of the cytogenetic (at the chromosome-level) test results of Clio’s leukemia cells were funky. A portion of them, about 20%, looked like they might contain a mutation called an MLL rearrangement. This is a very bad, very aggressive kind of cell. Like, a lot harder to kick than most. Like, majorly not good.

We’ve been anxious all along about it, but kept being told it was strange that it appeared to be only in a sub-population of the cells, and even so, it wasn’t fully clear whether it was a rearrangement or not. (Sometimes portions of chromosomes delete, rather than rearrange, and a deletion doesn’t have prognostic implications.)

Sorry, I see your eyes beginning to get that glaze-y look. And/or you’re having unpleasant flashbacks to high school biology and that exam you failed because you somehow convinced your parents to let you go to a Guns-n-Roses concert during finals week and you totally crammed the morning of the test during study hall.

Anyway, the hot shot Dana Farber doc said that after conferring with his colleagues, the studies, etc. he thought there was enough of a risk of it being an actual MLL rearrangement (a.k.a. BAD, for you Guns-n-Roses fans, who aren’t keeping up) that he thinks it would be too risky not to treat it as such. Because if we don’t, and the leukemia comes back as a result, it’s a lot harder to treat. “If I were a betting man,” he said, “I’d bet it wasn’t an MLL rearrangement.” This was comforting. But he can’t be a betting man when it comes to a child’s life. Neither can we.

The decision to go with the higher-risk category chemo regimen meant that we had to quickly change gears, and start off with an overnight in the hospital to administer the first kind of chemo, which needs lots of hydration with it, to prevent bladder damage. We thought it would be — and it should have been, ideally — just a quick overnight. Easy-peasy.

But in the late afternoon, Clio started getting a temperature. Eventually it hit 101. And when that happens with kids getting chemo, who have compromised immune systems, the docs automatically have to take blood cultures to see if it’s an infection, and treat with antibiotics. Which means at least another 48 hours in the hospital.

At least. Because here we are, 3 days later, and she’s still getting fevers — last night she went as high as 104.8, and we had to put cooling packs on her, and I was having to take verrrry deep breaths to keep myself from worrying that it was going to keep getting worse. (Visions of having to move into the ICU, seizures, coma…)

Meanwhile, none of the blood cultures have come back positive so far and she doesn’t have any outward symptoms that suggest a virus. I suppose it’s lucky that we were already here when the fever started. But it’s a weird coincidence. Though she had had a couple of low-grade fevers over the previous few days. And of course, now I’m wracking my brain, wondering how she might have gotten exposed to some sort of virus or infection. Someone we had contact with? Something she ate? Something in our house? Did she get exposed to something when we were over at Dana Farber?

The icing on the sucky cake is that they’re still doing her various chemo drugs as scheduled, so on top of feeling crappy because of whatever is giving her fevers, she’s got those side effects.

She’s sleeping most of the time. Not eating a thing, not wanting to play or even watch TV. Hard to believe that a few days ago she was home and playing — still resting a lot, but happily doing craft projects and playing board games and helping me water the garden and pick cherry tomatoes.

The most “activity” she’ll tolerate now is me reading to her. We are almost through Ramona and her Father. We started reading the Ramona books during our first hospital stay, and she really took to them. It’s been fun; I loved those books when I was a kid. (So, apparently, did most of the nurses, doctors and even one of the guys who cleaned our room, because everybody gets a big smile on their faces when they see me reading them, and says they remembered reading them as a kid.)

We knew that there would be hospital stays down the road for certain treatments, and maybe the occasional fever. But I’m just so bummed to be here again so soon. We even ended up (coincidentally) in our old room, which somehow makes it even worse.

Only a week and two days of all being home together. (Last weekend, Alastair and Elsa went to Ocean City, for a quick version of the vacay we were all going to take, and to a musical festival he was booked to play in. When they got back, Clio and I were here.)

Sickness sucks. Cancer sucks. I know that all the wonderful medical care she’s getting is literally saving her life. She has to get it. But I hate seeing her like this. I hate how much stuff has been put into her body in the past 4 days.

Methotrexate (chemo, into spinal fluid)

Ara-C (chemo)

Cytoxin (chemo)

Antibiotics (3 different kinds)

Propanolol (blood pressure meds)

Tylenol

6 MP (chemo)

Morphine

Zofran (for nausea)

Benadryl

Trilisate (for fevers)

Prevacid

Fluids, fluids, fluids, with various vitamins and agents added as needed.

 

I can’t wait until all of this is behind us, as I hope it will be in 2 or 3 years. Whoever thought, back in high school when I was acing my biology tests (because the only concerts I went to — and never during finals week, are you kidding? — were Billy Joel, James Taylor and Harry Connick Junior; I was a very, very good girl) that someday a few little malformed cells would have such an impact on my and my family’s life?

Oh, sweet child of mine. I wish I could make all this go away for you.