As some have you may have already read over the ‘book (that’s my hip-n-groovy way of referring to Facebook) we got some great news on Friday: Clio’s end-of-induction bone marrow biopsy showed that she was in full remission. Yay!
This is exactly what the docs want to see — and do see in 95% of all children with Acute Lymphoblastic Leukemia (ALL) after the first month of treatment. It’s an important indication of future success, and means we can now move on to the next phase of treatment. We’re relieved and thrilled but not really that surprised, as Clio has responded really well to treatments all along.
Still: Again, yay!
Another good thing: she’s off the juice. Her last steroid dose was last Tuesday night, and since then her insane appetite has gradually decreased. (And, sadly, so has her batting average.) She already looks less puffy and uncomfortable, and much more like herself. She seems to be in better spirits, too, with more energy and signature Clio silliness / potty talk. Case in point: Her forthcoming hit single, composed the other night: “I’m a droopy, droopy poopy.” Everybody sing along!
She’s doing so well — as well as she possibly could be doing.
But sometimes it hits me, just how much her little body is being put through — and will be put through over the next two-plus years. The mutant cells still hiding somewhere in her bones right now, hell-bent on destroying her. The surgically implanted port in her chest. The multiple lumbar punctures and bone marrow biopsies. The toxic drugs they’re using to cure her. The other drugs, to mitigate the side effects of those.
The other night while I was lying in bed waiting to fall asleep, for whatever reason I had a very vivid memory of how Clio felt in my arms as a baby. And thinking of her that way — small, and healthy and untouched by any of this — was so, so keenly painful. I haven’t broken down and cried much since our first few days in the hospital, but this was one of the times when I did.
Another time was last week right after I dropped Elsa off at day camp — after she screamed and cried and literally had to be pried off of me as I tried to leave. Not because she hated camp, but because she wanted more of me, of home, of her sister, of the normal routine she’d lost. (When I picked her up at the end of the day she was, of course, happy as a clam.)
I don’t cry when I’m suddenly struck by the weight and enormity of all this, or momentarily disoriented by the reality that somehow we’ve become one of those families with a kid with cancer (you know, those other families that you read about, and feel sorry for). Because these little realizations happen about three times a day, on average, and seriously, who’s got time for all that crying?
When people ask me how I’m doing (“How are you doing?” or “How are you doing?”) I tell them, truthfully, that I’m doing pretty well. I’m not unhappy. I get the feeling they don’t quite believe me. Like, they think I’m putting on a brave face but am inwardly wracked by fear and stress and sorrow and worry. Either that or I’m in serious denial.
But it’s true. I am doing fine. That doesn’t mean it isn’t hard sometimes.