My last entry about Rebecca and her chemotherapy was unexpectedly — well, I suppose “popular” is the technically correct term, though it carries a lot of positive connotations that I really don’t think apply. It drew a fair bit of response and social-media sharing, anyway. As a result, I wonder if I left new (or even returning) visitors with the wrong impression.
So let me be clear: Rebecca is not necessarily dying soon. We don’t have a “time left to live”, not even a hint of it, because the goal of her treatment is to eradicate the cancer and give her many, many years of life. So far, we seem to be on track for that, though of course we can never really know (but then, who can?). Her outburst about not ever being eight was not because she’d been told that she might die soon. We were deeply shocked to hear her say it. We know that kids hear more than we think they do, and we know she’s whip-smart, which is why we tried very hard not to talk about her survival odds in her presence. Still, it’s easy to think that someone of Rebecca’s youth doesn’t grasp the idea of mortality. We thought that she knew it was serious but not that her life was in ongoing danger. We were wrong. A few days ago, she told Kat that she’s afraid to die because it would hurt me forever. She’s not wrong.
Then again, given her age and intelligence, maybe she would be having these sorts of thoughts anyway. We’ll never know if it was forced on her early by her cancer, or if in a world without cancer she would have thought the same thing at the same age. It’s too easy to put a “because cancer” label on every moment of breathtaking insight, every time she steals our breath with her wisdom and her fears, every outburst of irrational rage. We try really hard not to do that, because doing so cheats her of her agency and keeps us from seeing her for herself in all her facets. We have a child, not a patient, and if it seems like that would be an easy distinction to maintain, it isn’t. Not even to those who have lifelong experience maintaining it.
That said, most of the time she’s a normal five-year-old kid, as full of joy and mirth and energy as ever. She’s tolerating the chemotherapy pretty well; her side effects so far are minimal, with no vomiting or other major GI problems, and she even still has a mostly-full head of hair. Sometimes she gets listless or feels wrung out after treatment, but not always. She had a bi-weekly intravenous treatment yesterday, in fact, and after dinner she was charging around the house with her brother and sister, laughing like a maniac the whole time.
And we let her, even though we probably shouldn’t have. Her treatment yesterday went fine, and her blood test came back with some really great numbers. The down side was that when we mentioned she had rebuilt her physical strength and skills to the point where her gym class coaches wanted her to move up to the pre-team class and start coming twice a week, the oncology team had to give us some bad news. One of her chemotherapy agents tends to weaken bones during treatment, and also multiply the chances of internal bleeding after blunt-force injury — like, say, falling off a pommel horse and striking the mat with her head. Or possibly fracturing ankle or leg bones with a dismount landing, or splintering vertebrae in a somersault. So no gymnastics, they said. Or, more accurately, they said that we have a choice: we can stop the gymnastics or stop the chemotherapy.
We cried a little bit as we told her, knowing how much she loves gym class and being there with her best friend. Rebecca did not cry. She just looked sad, and then insisted she only wants to go to school, not to gym. We probably cried a little bit more at the near-certainty that she was lying to try to protect us, which is heartbreaking all on its own, just as it was to hear of her fear of hurting me forever. We should protect her. Never the other way around.
Yet another case of three steps forward, two steps back. Just when we thought we were going to be able to add another bit of normalcy back, that door was closed to us. In some ways that makes it even more frustrating, to see the goal so close ahead and then watch it slip far away.
I wish we could say that we are unique, or that our situation is as terrible as it ever gets. Neither is anything remotely like being true. Thousands upon thousands of children the world over are afflicted with life-threatening conditions like cancer. Some of them have much better odds than Rebecca; others have far worse. Some lay in bed all the time, without the energy to sit up, let alone play with siblings. Some have no immune system left, others no appetite at all, still others live in constant pain. Some are already terminal, and if you want to know what I believe is the absolute hardest thing a parent can ever do, it’s to tell your son or daughter that they will die very soon, and then sit helpless with them and their siblings as they do. Superman Sam’s parents recently went through that hell. They had to bury their child’s body and stand at his graveside with their other children. As thousands of parents must, every day.
I cannot imagine how they survive, a month now after their son died. I know how they survive, but I can’t imagine doing it myself. I can’t imagine finding the strength to do it, even as I know that I would, because I would have to. That’s what I tell people when they say they could never be as strong as us in this situation: yes, you could. You would. You’d do it because you had to, and wish hard for the day that you could stop.
So yes, our lives are much different and demand more strength now, and we often have to hear and do things that break our hearts, but it could be so very much worse. We have hope where too many are long past that point, support and love where too many have little of either. Our difficulties are like a mill pond compared to the ocean of suffering that others endure. If you would spare a thought or a prayer for our difficulties, spare ten for theirs. Spare them more tangible support, if you can. All we have are each other, and only we can help those who so desperately need it.