You know in cartoons, where someone sees a shadow on the wall that looks like some giant creature / villain about to creep around the corner, and then it turns out to be a little mouse or something equally harmless?
I feel like I’m looking at that shadow right now, and my little cartoon heart is palpitating. Because I just don’t know whether it’s a cute little mouse or a big fucking 6-foot tall mutant rat.
Here’s the thing: Clio is about to start the phase of chemo called Interim Maintenance. I’m not sure why, exactly, it’s called this, since it doesn’t resemble the maintenance phase of Clio’s treatment (the longest, least intensive one, starting this spring, we hope…) at all.
What we’re looking at are four inpatient stays over the next 8 weeks (as in, every other week) of 2-5 days, for a high dose of a drug called Methotrexate. Clio will stay in the hospital until it clears out of her system, which can be quick or take a long time — it’s different for everyone, and can vary each time it’s given, too. Some kids end up having to stay even longer than 5 days.
So, it’s a logistical pain in the ass, for starters. It also makes it hard for me to know how many projects I should or shouldn’t take on over the next couple of months. (And I am the one who brings home the bacon, remember.)
But the real rat-monster-shadow on the wall is not knowing if Clio is going to breeze through this, as some kids do — maybe just feeling a little nauseous and run-down along the way — or is going to get hit harder.
I’ve looked on the Leukemia and Lymphoma Society message boards and read postings by other parents, to get a sense of what to expect, and the experiences are all over the map: from kids who have been in and out of the hospital within 36 hours, to ones who ended up with neurotoxicity and stroke-like events. (Ugh.) A lot of kids seem to get mouth sores, sometimes extending down into their GI tract, and don’t want to eat much as a result. I read about one kid who even ended up having to get a feeding tube.
I know, I know, I shouldn’t assume the worst or get freaked out by the extreme cases. But how can I not? Especially given our experience the last time we had to go into the hospital for chemo administration — when we ended up there for over a week because Clio got fevers.
It’s been a relatively uneventful past six weeks or so. We’ve been at home, and Clio has felt pretty good overall. Most of the time she seems like just a normal kid, and we feel like a normal family, going about our business with the exception of occasional clinic visits and at-home administration of chemo by visiting nurses. It’s been really, really nice.
But now we enter a new phase. So here’s hoping that it’s just a cutesy-wootsy little mouse around the corner. Or at worst, an average-sized, non-mutant, non-rabid rat.
This strained metaphor brought to you by the *actual* mice we keep getting in our kitchen.