Wishes and Fears

I. Wishes

Well, we’re in for it now. We pulled the trigger and contacted Make-a-Wish. (Before you panic: it’s not just for terminally ill kids. It’s for any kid with a life-threatening illness. I didn’t used to know that myself.)

We explained to Clio that in a few months they’d come to our house, and they’ll talk to her and get to know her a bit and she’ll able wish for someplace she wants to go, or a special person she wants to meet, or something really cool she wants to do.

She’s mentioned a few different ideas, one of which was to meet Novak Djokovich. Alastair watches a lot of tennis, and Clio likes to sit and watch with him. But this is pretty much just because she likes his name. And the Make-a-Wish approach to having her meet him would probably involve sending us to a tennis tournament — where Alastair and I would be quite content, but where the girls would probably be bored out of their skulls.

We were hoping she’d say she wanted to go to Hawaii. But we didn’t go so far as to make suggestions, because that wouldn’t be cool. There is, however, one thing she’s mentioned multiple times now, and it’s — wait for it, because it’s really original, and you’re never going to guess…

She wants to meet Mickey Mouse.

First, I must say, that I sort of like how she went Old School on this one. Not Belle or Ariel or those other twits, but the original Disney cartoon character, born in 1928. We let the girls watch Mickey Mouse Clubhouse sometimes, and neither of them has ever been into the whole princess thing, so it makes sense.

But if you’ve read my blog in the past (specifically the old one over on Babble — a Disney company), you know that Disney World has never been high on my list of places Alastair or I want to bring the girls (if we could, theoretically, afford it). I kind of hate theme parks in general — the canned fun, the crowds, the exorbitant prices. And the merchandising and media juggernaut that is Disney, Corp. sort of makes me cringe.

BUT, I do like Disney movies, especially the more recent, girl-power-y ones. AND, I have to admit, I had a great time at Disney World when I went there as a kid. AND, well, if our kid with leukemia wants to go to Disney World, and someone else wants to pay for it…well, slap a pair of Mickey ears on me and let’s go. The girls will have a blast (and I don’t mean a lymphoblast), and we probably will, too.

And you know what? I now totally and completely understand why there are organizations and programs and hospital and clinic staff whose sole purpose is to make life a little more fun for kids with cancer (and their families). In fact, I say, bring it on. If the four of us have to deal with this shit — hospital stays and clinic visits and homeschooling and invasive procedures and hair loss and drug side effects and anxiety and fear (see next section) and all the rest — until October 2014, which is when Clio will finally end treatment, and beyond (because relapse can happen…) then, yeah. Sign us up for free toys and Red Sox tickets and Hole in the Wall Camp and Disney and all the rest.

We’ll take it, please.

* * *

II. Fears

Most of the time, I don’t feel scared about Clio’s illness. I think once we found out that her kind of leukemia has an 87% (or higher) overall cure rate, we sort of shut off our fear that she might be one of the unlucky ones. We just think: well, it’s going to be a long road, but she’ll get better. Everything up until now — her white blood count at diagnosis, her response to induction chemo — has favorable implications. And anyway, the statistical odds are overwhelmingly in her favor.

Which reminds me of a certain phrase from The Hunger Games, spoken by Effie Trinket  as she is about to choose two children from the assembled hundreds to go fight to their death in the Hunger Games arena. And every one of those kids, and their parents, is scared shitless, because they know that at least one of them, most likely both, are going to die in the arena.

Those District kids had much better odds of survival than my kid’s got. If there are 400 total kids, and they’re choosing 2, that’s a 99.55% chance of survival. (Tesserae not taken into account in this scenario)

Or, if you’re not a Hunger Games fan, try this: if 10 kids, including one of yours, were lined up in a row, and a firing squad was going to take one of them out, but you didn’t know which, would you not be terrified beyond words? (And, if your kid and all the rest had the MLL rearrangement that Clio might have, make that more like 3 or 4 kids.)

But we don’t and we can’t think that way. Because we wouldn’t be able to function. We wouldn’t have the strength to get through this and do everything we possibly can to keep our daughter healthy — even if the outcome ultimately isn’t up to us.

There are moments, though, when that fear swoops in and looms, vulture-like, over everything. Like when Clio’s fever started got up toward 105 last week, or when, on Saturday night, she had an allergic reaction to a blood transfusion. And that was mild stuff, relatively speaking.

A few days ago, I read about the daughter of a new virtual acquaintance who lost her battle with leukemia. Like Clio, this little girl had had the “best kind of leukemia.” But that didn’t keep relapses and infectious complications away.

And the day before yesterday, I learned that one of the other leukemia patients in our unit who we’d seen a lot of — an adorable little girl just three-years-old, who likes to blow kisses at everyone — was not doing well. Her mother had told me she had relapsed (Alastair later learned, from her father, that it was her 3rd or 4th relapse) but the intense doctor and nurse activity around her door, and the number of family members in and out of her room on Wednesday suggested that things were pretty bad. I asked one of our nurses about it, but she told me she wasn’t allowed to give any details (which is exactly right); all she said was, “She’s really sick.”

Over the next few years we probably will (if we haven’t already) meet kids who who don’t make it. I hate that. Meanwhile, all we can do is remain stubbornly, optimistically convinced that our little girl won’t be one of them.

And in the meantime, let’s go to f*$%ing Disney World.