Why I've Been Wishing My Son Unwell
Things are different when your kids is a childhood cancer survivor.
iphotosmile / Shutterstock Every time my son gets into the car and complains of a headache, I’m pleased. When he’s out of breath after climbing a single flight of stairs, I feel relief.
And when he’s too exhausted to drag himself out of bed even after 14 hours of sleep, I think, “Oh, good.”
No, I’m not an evil mother. I just want him to feel badly now so he can feel better later.
Let me explain, in the most CliffsNotes way possible: This kid was diagnosed with cancer when he was ten months old.
He was diagnosed again when he was three. Six abdominal surgeries, fourteen months of chemo, and twelve rounds of radiation later, he was fine. Except he was in stage 3 renal failure, having lost his entire right kidney and half of his left.
They told us that little half-kidney would likely keep going until he hit puberty, when a growth spurt and added muscle mass would put it into overdrive, causing it to peter out. We thought that sounded fantastic. We even joked about how that news would be received by so many parents as tragic and terrifying, but to us, it felt like a gift.
First of all, our kid had had cancer twice, a little thing like kidney disease seemed super-manageable. But mostly, who can even believe that their three-year-old will ever hit puberty? I mean, that had to be a million years away, right?
Well, it wasn’t quite a million years and they passed quickly, as any parent of teens will tell you years do.
They were normal years.
Austin had to take a bunch of meds every day, he had more doctor’s appointments than most, and his sports physical always had an addendum stapled to it (“if yes, please explain …”), but they were normal. He was normal. He slept over at his friends’ houses so frequently I would say goodbye to him on Friday afternoon and see him again at Sunday dinner.
He skied black diamonds and executed perfect backflips and hit balls out of the park. He was a kid, as he deserved to be.
But he’s 15 now and the kidney is failing exactly as the doctors predicted it would. He’s taller than I am and has to shave his little mustache and battle his acne and the kidney is failing. So he’s getting a transplant, a strong healthy new kidney from his father.
Photo courtesy of the author
The moment we’d always known was coming, what we’d always considered “our next big thing” is finally here, it’s happening tomorrow. And this is good, it’s what so many dream of and wish and hope and wait, and wait, and wait, for.
But … because there’s always a but, right? But … I’m afraid that he feels too good right now.
He’s not on dialysis; it was always our goal to avoid that particular misery and transplant him preemptively. It’s the safest option, the one most likely to result in success, and one we are lucky to have.
But it means that he still feels relatively normal. Yes, he’s tired. And yes, he gets out of breath climbing the stairs. And yes, he has headaches and can never wake up in the morning, but how many teens can wake up in the morning?
He’s still okay. He goes to school every day, keeping up in his high school classes.
He plays baseball, for five separate teams over the past six months: middle school last spring, two summer teams, then fall ball and now high school preseason. And he plays baseball well — I kid you not, you should see this kid get up to bat.
So I worry because I’m his mom and that’s my job.
I worry, not so much about Tuesday’s surgery; not to sound cavalier but we’ve done this, too many times. Austin has had ten surgeries already, so that day I can handle it, even if I will have two loved ones under at once.
No, I’m worried about after.
I’m worried about the anti-rejection and immunosuppressant meds he’ll be on for the rest of his life.
I’m worried about the side effects that range from hair loss and weight gain to insomnia and joint pain to brain fog and memory loss and diabetes and skin cancer.
I’m worried about the one that causes nightmares (not great for a 15-year old) and the one that causes mood swings (even worse for a 15-year old).
I’m worried about the people I hear who say the only thing worse than the meds they’re on now is dialysis … because he was never on dialysis.
I’m worried about the risk of infection, not just from big things like Covid but from anything and everything, like the common cold and some tiny bug that no one else would even notice.
I’m worried about the fact that he can’t swim in lakes or go in hot tubs because of bacteria and I’m worried that he can’t eat salads from restaurants or raw lunch meat because of bacteria and I’m worried that they list cantaloupe and pineapple as high-risk foods because of bacteria.
I’m frequently worried about bacteria.
I’m worried, more than anything, that he may feel worse instead of feeling better.
I’m worried he might someday say, “Mom, why did you make me do this? I was fine before and this is so much worse.” Because he is generally fine.
That won’t last, I know. He needs this kidney, whether he feels it or not. And I am fully aware that many people waiting for kidneys would give anything to be in our shoes and have my worries.
But I worry nonetheless.
And so every time he complains of not feeling good, I feel relieved. Because I want him to feel better.
Krissy Dietrich Gallagher is a freelance journalist with interests in history/politics (Chile), mothering (childhood cancer), & public education. Author of forthcoming nonfiction Under A Broken Sky. Follow Krissy on Medium for more.