While we were in Florida on Rebecca’s Make-A-Wish trip to Disney (and other parks), we were asked a few times which of our kids was the Wish kid. And I suspect that quite a few more people just assumed it was Carolyn, since her hair is still buzz-cut short. Rebecca was able to fully enjoy the trip and be an active part of it, every bit as much as her siblings and cousins, and the pictures and videos we all took are full of laughter and excitement from all of the kids.
This has been one of the many fortunate aspects of our misfortune: Rebecca has never really been sick, in the “I feel ill” sense of the word, since she recovered from her surgeries last fall. The tumors in her head haven’t had any measurable neurological effects, and if they’ve made her a little more irritable or irrational, well, this is a five-year-old we’re talking about. How could anyone tell?
Even the chemotherapy and radiation therapy had no major side effects. We tend to think of cancer patients as thin, pale, bald, weak, and vomiting, as much from the toxins we pour into them as anything else. Rebecca has remained as energetic, luminous, and irrepressible as ever. Now that she’s stopped her Avastin treatments, she’s able to go back to gymnastics class, and is eager to do so. She’s even kept a full head of hair, albeit with some loss of hair volume. We can see that there’s less hair, but a random passerby on the street would never suspect she was a cancer patient, let alone near-terminal.
Thus our new mantra: “Today she’s okay.” We don’t know what tomorrow will bring; but really, who ever does? We live with a more present, known danger than most, but today she’s a normal kid. She’s so normal that even we can forget, sometimes for hours at a time, that she’s terminally ill, that a lump of runaway growth sits behind her eye and threatens to one day kill her. She’s so normal that we have the space to make our family’s life (mostly) normal. We hope that tomorrow she’ll be the same. Whenever our fear of that tomorrow rises, we say to ourselves and each other: “Today she’s okay.”
We’re still working to find treatment options, of course. There are some promising leads developing even as other leads that looked promising have been closed to us. A driving force in that search is the desire to keep her as healthy as possible — to preserve her quality of life while still trying to extend the quantity of her life.
It’s a balance almost incomprehensible in its gravity: to decide how much quantity to risk in exchange for protection of the quality, to decide how much quality we can sacrifice in an effort to add quantity. Before all this, I would have thought maintaining that balance would be paralyzing, but it isn’t. If it ever starts to become so, we have only to look at her, still full of life and vigor, to know what to do. We may be the captains of the ship that carries her, but we steer it by the light of her star.
Today she’s okay. And so today we’re okay.