It’s hard not to play the “this time last year…” game when there’s been a big change in your life. I remember doing it when my girls were a few months old: This time last year, I didn’t have kids yet! And a year after the several-months’ trip I took to South America when I was 25. This time last year, I was strolling around Cusco!
We’ve been doing it a lot around here lately, too: This time last year, Clio didn’t have cancer. Rather, she did. We just didn’t know it yet.
It was around this time last year when her symptoms began: Occasional fevers with no other symptoms. Intermittent leg and hip pain. Periodic complaints of vague belly aches.
Looking back on it now, it’s all so haunting and ominous seeming. But at the time, we didn’t know it was all related, and we weren’t overly worried — not at first, anyway. The fevers? Maybe some weird virus she couldn’t quite kick. The leg pain? Growing pains, probably. The belly pain? Maybe just her not being able to articulate what it feels like to be hungry.
It wasn’t until about the second week of June, when things seemed to be getting steadily worse, that I started Googling things like Lyme disease symptoms. Juvenile arthritis symptoms. Leukemia symptoms. Our first visit to our pediatrician, and the “within the range of normal” blood test results we got back put our minds at ease, temporarily. But the symptoms kept getting worse.
A second visit to the pediatrician yielded no new insights. New symptoms had started appearing — bleeding gums, hives, crusty blood in her nose, what seemed to be a swollen belly — and we started feeling increasingly frustrated at the lack of answers, increasingly worried. But at least, we thought, it’s not leukemia. Because the blood tests would have shown it.
Meanwhile, I can look back at our calendar for May and June of 2012 and see dates and events that bring to mind conversations I had with people about Clio’s “mystery ailment” or times when she had a fever, or was feeling particularly tired or achy.
I see the reading I did in Maine on June 28, after which Alastair called me to say that Clio had gotten a giant, single hive on her leg that had brought them home from a fireworks display at the park. She was screaming, inconsolable. But then the hive went away and she was fine. Good as new.
The next afternoon she ran a fever. The next morning I brought her to the Emergency Room.
I remember that whole spring, it seems, with unusual vividness. Maybe after Clio was diagnosed, my mind seized on all those recent memories for dear life — those last, shining moments of normalcy. The golden hour of life pre-cancer.
And still, it’s hard to remember what life was like before Clio had cancer. And it’s difficult to think back on it without a pang of pain and loss. Sometimes a pang strong enough to bring tears.
But the good news about having arrived at the one year mark (or close to it) is that Clio’s treatment is about to go into Maintenance (or “Continuation”) mode. This means no more high-dose steroids, no more asparaginase shots (her last one is tomorrow, actually!), and we only have to go to the clinic every three weeks most of the time — instead of twice a week.
“You’ll get a little more of your life back,” one of our favorite nurses has said.
It won’t be the life we knew prior to this time last year, but we’ll take it.