Cancer is insidious, of course, but its tendrils spread in more ways than you might think.
(This is all true for pretty much any cancer, even the ones that aren’t aggressive and aren’t pediatric, but I’m the parent of a child with aggressive pediatric cancer, so that’s what I’m going to talk about.)
The most obvious insidiousness is the way that many cancers send out thin fibers, interpenetrating healthy tissue, hiding literally microscopic reservoirs in places it can’t be seen. That’s bad enough, of course. It’s what the surgeries and radiation and chemotherapy are meant to combat, and if they’re successful then we’ll have saved her life.
What’s almost as bad, from a long-term perspective, is how, for us as her parents and therefore for her, cancer shades everything that happens in our daughter’s life. Kids are supposed to play and run and fall down and get scrapes and bumps and then get back up again to get on with life. They’re supposed to push themselves too hard, get exhausted, catch colds, run fevers, build up their immune systems and their experiences.
But then here comes cancer, and we second-guess every part of that. If she falls and gets a bruise, we have to watch it carefully to make sure it doesn’t blossom into a hematoma or worse, a side effect of the chemotherapy. If she runs a fever, we have to keep an incredibly close eye on how high it rises, because fever could be the onset of neutropenia. If she complains of a headache, we immediately wonder if we need to get her to an MRI to make sure the tumor hasn’t come back.
Or, you know, she might just have a headache, or a viral fever, or a scrape that will quietly heal up.
Even if a child is lucky enough to survive cancer, there is the very real danger that it could effectively steal their childhood. We can’t just let Rebecca be a kid, however much we might want to do so. And we do. Oh, we do. We always wanted our kids to have the chance and the time and the space to be kids. To make mud pies, nail together scrap wood to make a fort in the backyard, wreck the kitchen trying to make a chocolate cake, properly learn to chop vegetables, climb trees and take gym class and wrestle with siblings and just be a kid.
And it’s hard. It is so hard, because some of those things we have to just flat-out forbid her to do because of the risks, and other things we have to treat as way more serious than we ever would have.
There are no more mud pies, because tetanus is in all the soil everywhere. Gym class is out, because of the risk of internal bleeding as the result of a normal fall. We can’t just tell her to “walk it off”; now there’s three rounds of washing and antibiotic cream and two crossed bandages over the smallest of scrapes, which risks making all the kids germ-phobic and hypochondriac by example.
There’s no more “too bad about the cold, but at least it will strengthen her immune system”, no more shrugging off a low-grade fever with Tylenol, chicken soup, and a day in bed. Now we own a hospital-grade oral/axillary thermometer, disposable probe sleeves and all, because if Rebecca’s temperature ever rises above a very precisely defined threshold, we take her straight to the hospital. Not because we want to, but because the doctors have made it very clear that an elevated temperature might be nothing, or it might be the beginning of a week or more in the hospital as she fights to survive what would merely inconvenience (almost) any other child. We can’t even give her Tylenol, because its magic fever-lowering properties could mask a much deeper problem.
For that matter, we’ve always had a relatively lax attitude toward germs and allergens. We didn’t let the house become a pigsty by any stretch, it’s not like we were smearing them in filth; but now we have hand sanitizer bottles mounted on walls all over the house and two high-grade high-capacity dedicated HEPA filtration units. Not because we want them, but because our daughter might one day need them.
Helicopter parenting? Please. Try NSA parenting. What’s more, try it even while you hate every inch of it, because it’s forcing you to be the kind of parent you swore you’d never be.
We want our kids to learn that cuts and bumps and bruises are part of life and something you shake off and move on from. Instead, we risk teaching them that cuts and bumps and bruises are sources of deadly danger, something to worry about and obsess over, something to avoid at all costs.
Sure, we can talk about everything with them, and we do, but children pay more attention to what you do than what you say. We try to balance things out, find ways to show that life is more than dealing with cancer, and fervently hope that they learn the lessons we want them to learn instead of what we’re afraid they’re absorbing.
I know it’s possible to do right, I do. I’ve seen it done before, and lived the results. I know that we’ll do our utmost to make it happen. It’s just so very, very hard not to constantly worry that even if we do save her, it will be at the cost of her childhood, and the childhoods of her siblings as well.