A little over a week ago officially marked five years that Clio has been in remission: no perceptible cancer cells in her body. After two years of intense treatment and three years without any signs of relapse (occasional parental freak-outs notwithstanding), it’s very, very, very, extremely, extremely likely at this point that her cancer — the same cancer, that is — will never come back.
Five years is a big milestone in the cancer world. In the pediatric leukemia world, at least, it means you’re officially a “survivor.” I should probably feel some big sense of relief at this. And I do feel relieved, on some level. Obviously it’s a comfort to feel like we’ve got the stats in our corner now. Officially. And that Clio — and our whole family, in a way — are survivors.
And yet, as has been the case with other “treatmentversaries,” we’ve noted, I haven’t really felt this one on a deep, emotional level. I mean, I’m happy obviously. (Obviously!) ButI don’t suddenly feel some huge sense of relief and joy all at once because now we’ve passed the five-year mark. It’s something that’s been building gradually over time, the farther away we’ve gotten from her illness.
Still. It’s a good thing, and I felt the need to mark the occasion with a blog post, so here it is.
The truth is, the anniversary that I feel much more — and did this year, as well — is the anniversary of when we found out Clio had cancer. It wells up pretty hard in June, which is when it happened, especially if there are places or recurring events that remind me of those first days.
[wavy screen, wavy screen, calendar flips backward to 2012….]
Two nights before Clio was diagnosed, I was up in Maine giving a reading for Double Time, which had come out a few weeks before. Alastair was home with the girls, and he took them up to see some fireworks at a park in Somerville, a few blocks away. Our good friends and their daughter went, too.
Clio had been having strange, unexplained symptoms for over a month at that point — intermittent fevers, stomach pains, increasingly achey legs. She was almost hobbling by then. And a couple of days before the fireworks, she’d started getting hives randomly, too, itchy and huge.
We’d already taken her to her pediatrician twice, had blood work done that showed up normal, and — feeling like the doctor wasn’t taking our concerns seriously enough, and knowing that something wasn’t right — we’d made an appointment with a rheumatologist, whom Clio was scheduled to see the following week.
Still, she was happy and energetic enough to go up to see the fireworks that night, and she and Elsa and their buddy raided the dress-up bins and got all dolled up and went. Meanwhile, I gave my reading up in Portland.
Afterward, late, Alastair called me at my parents’ house, where I was staying, and said it had ended up being a really hard night. He’d let the girls wear their dress shoes without socks (bad Daddy) and at some point Clio started complaining — and then crying and screaming — that her feet hurt. It seemed like she’d started getting blisters. Then Elsa started complaining about her feet. Ultimately, he ended up carrying the two of them back home, both of them freaking out.
Which could totally have happened in normal circumstances — overtired twin 5-year-old meltdown. But from Alastair’s account, it was way more intense than that. And at that point, both of us were very attuned to the strange things that had been going on with Clio. Something about her reaction, and the whole thing, just felt like one more piece of the puzzle. The problem.
When I got off the phone with Alastair, I told my dad, who was in the room during the phone call, what happened. He knew about Clio’s symptoms, so he understood the larger context. He said, “You guys are really worried about her, aren’t you.” And I said yes, we really are. I realized in that moment just how worried.
Two days later, we were in the hospital, and had been told that Clio most likely had leukemia.
So, six weeks ago, June 29, when I was driving past our old neighborhood, on my way to a reading in Cambridge, and realized — due to a bunch of street closings, and the sight of a parade toy vendor rolling his cart up the road — that the very same fireworks were happening, I got wallopped. Ache in the chest, holding back tears. I called my friend Megan who was with us that night five years before, because.
Because that was the night I felt the gravity of five years: A milestone that had seemed impossibly, infinitely far away, and maybe unattainable altogether, when Clio was first in treatment. She would be ten — ten?! — when she was considered “cured”? (Assuming…assuming….) She was only five! Just finished preschool! Still used a car seat and watched Curious George. Ten? They might as well have said she’d be fifty.
But here we are now. And there she was, back home while I drove to Cambridge that night — tall and vibrant and happy and healthy and ten years old. A full head of beautiful hair, back to looking much like it did before she lost it. No medical supplies on our kitchen counters, or Dana Farber phone numbers on our fridge (our fridge in a different house, in a different town). No more Curious George. As I write this, she and Elsa and a friend are watching The Flash.
She’s a big kid. And so is her sister. And Alastair and I are in our forties, tougher and wiser and a little bit softer, inside and out. The crappy little boat trip we were on has — we hope — ended, and we’re here on the shore. I hope to God this is where we’ll stay.