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What Cancer Can Kill

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.

Eight Responses»

    • #1
    • Comment
    • Mon 10 Mar 2014
    • 1116
    Cameron Barrett wrote in to say...

    Thank you for sharing, Eric. Your family is in my thoughts.

    • #2
    • Comment
    • Mon 10 Mar 2014
    • 1154
    Tim wrote in to say...

    My heart is with you, Eric. I’m glad Rebecca has such a knowledgeable, reasonable, and loving father.

    • #3
    • Comment
    • Mon 10 Mar 2014
    • 1459
    Lydia wrote in to say...

    Having been reared by phobic parents, my sister and I can vouch for kids’ ability to make different choices. In no way does this minimize the grotesque conundrum you and Kat are in, but I am confident that all your good efforts will be more than sufficient to ensure your kids get the chances they deserve.
    You remain exquisite representatives of the parent-species and my admiration only grows deeper. Hoping that Rebecca’s fragile state becomes less so and the hand sanitizers can be tossed along with the NSA-level vigilance.

    • #4
    • Comment
    • Mon 10 Mar 2014
    • 1540
    dj wrote in to say...

    Steady guy!…

    By now you may have swung out of the normal ups and downs “chemoparents” experience and be out of the mild slump that produced this article; BUT, it doesn’t hurt to have called to your attention on occasion a fact that you already know. Namely: HEPA filters, sanitize bottles, gym classes, mud pies, crossed bandages and the like are merely things — not much different than insulin syringes, scoliosis braces, prosthetics, braille typewriters, pacemakers, chest thumpers — you get the picture.

    Kids can grow and happily thrive in a world either with or without them, no difference. What’s “normal” to them is what they’re told and shown is “normal.” You gave a very literative list of what you consider is “normal childhood” — and I dare say pretty much all of your readers identify in an instant with your image of childhood, even I. But, I don’t remember even one episode in my life of making a mud pie, I hated gym and I wish they even had HEPA filters back then to help childhood allergy attacks.

    One of the years I was a diabetic camp physician/counselor there were two boys, both eight, same build, both diabetic since six — totally different personalities! One an unhappy, complaining, demanding “nothing-goes-right-for-me” child with no friends; the other a “let-me-do-that,” helpful, pleasant boy who everyone wanted to be around. I taught them both how to give themselves their own injections (a published goal of the camp) and they both succeeded at it for the entire week. The second watched, listened, tried and basked in his accomplishment. The first completely wore us all out with the machinations, cajolings, and little “tricks” we had to do to get him to learn – then never felt any accomplishment for his success.

    Why the difference in two similar boys with identical problems? I found out on the last day when parents came to pick them up. Individually they both said the same thing to their parent: “I gave myself a shot!” The first, a single mother, acted at first shocked and then gooey-effusive, on and on about what a “brave boy”; he was. The second, an above-the-knee amputee who wore shorts, merely looked at him proudly and said “good job son, that’ll come in handy won’t it?”. Really, matter of fact, kind, no-big-deal and knew you could do it.

    I got to know the second family a bit better and their life’s attitude was clear: “In our family we do what we need to do even if we don’t want to – no big deal – for as long as we need to do it. We help each other when they need it and enjoy all the things we have time for.” Perhaps it was “fortunate” that the father lost his leg so he was able better to see the diabetes with perspective because he certainly was giving his son exactly the childhood he needed. It is my contention, however, that an intelligent parent can do it even if they have both legs intact.

    The following year they both came back to camp and were in my cabin. The first hadn’t given himself his own injection since the previous year, was withdrawn and still a loner; the second, had given his own injections ever since last year, was even more independent and got everything there was to get out of a week in the mountains surrounded by 100 kids with his same “disease.” They were both “a kid apart” with “a disease apart” and “a childhood apart” having “parents apart” in a “family apart” — get it?

    Thermometers, HEPA, sanitizers and Bandaid’s are a “normal” childhood – for Becca. You don’t have the same procedures and thresholds for everyone in the household. The circumstances are what they are until they change and you won’t do them any more – that’s not a concept beyond a child’s grasp. I think you’re probably doing a better job and giving the kids a better childhood than you may be giving yourself credit for – unless they always see you at the dinner table with a far off look of sadness over what isn’t there. And, I think you have been preparing yourself to be the parent of this “family apart” than you have realized.

    [Your computer knows my email if you’d like to make any rebuttals ]

    • #5
    • Comment
    • Mon 10 Mar 2014
    • 1552
    dj wrote in to say...

    Sure wish your comment function allowed authors to edit their comments – if it did, there are a couple of typos and tag errors that crept in, despite 5 or 6 proof-reads — ah well, it is what it is, I never had Sesame Street as a kid!

    • #6
    • Comment
    • Mon 10 Mar 2014
    • 1611
    Alistair wrote in to say...

    I think children are less affected by what you do with them than who you are. They will still grow and learn off of the strength and compassion you show even if they grow up in difficult circumstances.

    • #7
    • Comment
    • Mon 10 Mar 2014
    • 1915
    Paul wrote in to say...

    Your children and you will come out of this stronger and better than you can imagine. If that’s not what happens then neither they nor you are the people you portray in your postings.

    If they learn from what they absorb, all I can say is that they will learn to be incredibly caring and positive people, who make the best of even the worst situation, and do everything in their power to help those that they love.

    Thank you for sharing these thoughts with us. You and your family are in my thoughts and prayers.

    • #8
    • Comment
    • Fri 21 Mar 2014
    • 1217
    Alpheus wrote in to say...

    I came here to learn a bit more about CSS (having come here from “http://www.hotdesign.com/seybold/09redesigns.html“); this is a sobering reminder of how life has all sorts of twists and turns, with interesting surprises…and not all of them are pleasant.

    My father-in-law was diagnosed with stage-4 cancer about a month ago. He’s been given six months to live, and he just started chemotherapy to extend his life, by maybe a year beyond that. Before this diagnosis, we expected him to die from diabetes; indeed, he’s already lived a decade longer than his ancestors typically have lived. It’s still sobering when we have to face mortality, whether for ourselves or for someone that’s close to us.

    (Incidentally, we already ran into the disease issue–just before my father-in-law started his chemo, he had a sore throat, and he was required to wait until it was completely gone before starting. At one point, my wife and I were wondering if he was having second thoughts, and was purposefully delaying the therapy…)

    I hope your daughter recovers, and when she does, I hope she can learn to take those “risks” that so many of us take for granted!

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