Cancer · Chemo Dad · Chemo mom · Childhood Cancer · children · Family · Histiocytosis · liver disease · pediatric cancer · PTSD · Uncategorized

Life After Childhood Cancer

I’ve never been a fan of scary movies.  I don’t know why, I just don’t do them.  Don’t get me wrong, a good book series about zombies or the apocalypse or ghost hauntings, and I’m there with my kindle, a 32 oz of cold coffee, and a growl at the husband for interrupting my book time.  But that lingering feeling you get after a scary movie, you know the one, where something is always just behind the curtain, around the corner, in your closet, just waiting to come out and rip your heart from your chest.  Yeah, that horrible feeling?  THAT is why I can’t stand scary movies.  Never have been able to do it.  Starting all the way back when I was a kid and the Gremlins came out in theaters.

That’s what life after childhood cancer is like.  It’s like being haunted by Michael Myers, like knowing that Freddy Kruegger might be under your bed, like there’s some dude with a knife behind a mask waiting to torture you slowly while you watch.

Sophie turns 10 in a couple of weeks.  She was born with Multisystem Refractory Langerhans Cell Histiocytosis.  (Say that five times fast. Okay, just try to say it once without stumbling, I dare ya.)  That’s a fancy way to say she had a very very rare blood cancer that causes swirled clumps of screwed up white blood cells to lump up in various parts of her liver, spleen, GI tract, and pituitary gland, eat away at whatever organ they sat in, and then disperse, leaving gaping holes called lesions that don’t fill in.

She fought it, and she fought it hard, and after 23 months of chemo, one life flight for a massive GI bleed, one 3 hour ambulance drive for the same reason, endless ER visits and admits for fevers, countless infections due to immunosuppression, a broken leg (due to weakened bones), and MONTHS in the hospital, she kicked it’s swirled-white-blood-cell @$$ and took names.

We are nearly 9 years into remission, people.  Nine years of no cancer.    (this is where you whoop and holler and get excited, cause THAT’S.UNBELIEVABLY.AWESOME.)

And I swear that we are still haunted by the specter of the monster behind the curtain, just waiting until we are not paying attention to rush out and slaughter our lives.

Most forms of childhood cancer have life-long, long-term effects, many that show up well after the cancer is gone. These long-term effects can be physical or emotional, and can include:

  • Emotional troubles
  • Secondary cancers
  • Reproductive and sexual development problems
  • Growth, development, and hormone problems
  • Learning and memory problems
  • Heart problems
  • Lung and breathing problems
  • Dental problems
  • Digestive system
  • Hearing problems
  • Vision and eye problems

(for further information, please visit the American Society of Clinical Oncology and at

And here’s the thing.  That’s not an exhaustive list.   But even some of those effects can blend into your life.  You get used to dealing with the glasses and dietary issues.  You learn to work around anxiety and medical-related OCD issues.  We go through a day, a week, months of school work and playing in the yard and girl scout meetings and some of the long-term effects just blend into the wallpaper.  Day in and day out of “what do you want for dinner?” (“I don’t know. What do you what?)”  and “OMG THIS HOUSE IS A STY!” and “Clean up your room” and “Stop hitting your sister!”  The daily grind of get up, shower, go to work, pick up the kids, realize you forgot to pull dinner out of the freezer and try to wing it with a hotdog and steamed veggies, argue with the kid that the green beans won’t kill her, and…. you get the picture.  Life.  It drudges on.  Nothing happens.

But we can’t get complacent.  I don’t ever want to get complacent.  Because cancer is the kind of thing that will come back for you.  The kind of cancer that Sophie had, the refractory kind, is the kind that relapses.  Granted, she’s been in remission so long that the odds are unbelievably low now, but I keep learning from other children in the histiocytosis support group (online) that the risk is never really gone.

And if I’m not reminded by one of our Histio Heros suddenly and unexpectedly being diagnosed with relapse, then I’m reminded by something Sophie does, a fever or a cough or a pain in her leg.  Something that typically turns out to be nothing but the pediatrician will ALWAYS take seriously because of her history.  Or it could be a discussion with a mom mentioning something that we played off as normal in our kids that turns out to not be normal, but we didn’t get the memo because normal isn’t our lives.  Or it could be a new study being released discussing some new drug or her odds of a difficult side-effect of the drugs she was on.

Childhood cancer doesn’t just go away.  It resurfaces.  It reminds you it’s there.  It makes you wonder if it’s back.  If it’s going to cause a complication that will hurt her down the road.  If it will cause a secondary cancer in 20, 30, 40 years.  Will she still be able to grow up.  Will she be happy?  It threatens your child with a wink and a nod before it goes back into the closet with the knife it chose to not use this time.   It’s the asshole that everyone wants to die a horrible death at the end of the movie but the stupid movie producers and writers keep him alive and let him limp away for the inevitable, poorly-written sequel that you will have to deal with in a few years.

I hate horror movies.  And somehow, my little girl has landed inside one.  Likely for the rest of her life.  And I can’t stand it.  That is what life is like after childhood cancer.

So if you run across one of us.  A parent of a child that is currently fighting or has survived cancer, or the childhood survivor of cancer, just be aware that we are living this way.  Waiting for the other shoe to drop.  Avoiding anything that could be dangerous or even remotely hint at a future injury or illness.  And waiting.  Because that stupid clown is still in the sewage system and Chucky can’t seem to take a hint and melt already.

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