cancer · Childhood Cancer Awareness Month · parenting · running · special needs parenting · Uncategorized

Down Syndrome and Leukemia

When Alex was two years old, his pediatrician sat me down at a well child visit and outlined the symptoms of leukemia.  Why?  Because 2-3% of children with Down syndrome develop leukemia, and she wanted to be sure to catch it early if it occurred.

Though that was over 12 years ago, the memory still haunts me.

When Ben was diagnosed, we needed no reminders of the increased likelihood of leukemia in kids with Down syndrome.

You know what.  I’m struggling with this.  The words won’t come, the emotions are carefully guarded in a high tower with dragons and moats and drawbridges protecting them.  So here we go, stuffs about to get real.

Ben came home supposedly healthy.  It’s not that we insisted upon a healthy baby, but we were certainly pleased when the child with whom we were placed had no apparent health problems, because, hey, a healthy baby is a good thing.  That obviously went south pretty damn fast with hearing impairment, thyroid failure and Hirschsprung’s disease all thrown into his first year home with us.  But yeah, that’s okay, life comes with no guarantees.

Of course not, because once we got the congenital nonsense taken care of along came Cyclic Vomiting.  We had a good year ONE GOOD YEAR (during which my mother in law died and my husband and I both had major surgery), and poor Ben was body slammed with leukemia.

I literally don’t have words.

I wrote a whole book about Ben’s life so far.  I can document the crap out of all that he’s been through, but the emotions, what it actually was, there are no words.  NONE.


The English language, rich and beautiful as it is, completely fails me when it comes to that day.

Moment by moment, I remember it so clearly, yet it’s a clustered mess of horror that I fail to untangle.

And every year almost 16,000 families live that day.

And some live an even worse day, they day their child succumbs to cancer.

By numbers it’s still over 10% of children diagnosed with cancer who die of it.  That’s almost 2000 children a year.  Numbers don’t tell the story though.  Not even close.

I wish, I wish I had some way to express to you the hell of that day.  The hell that extended for over three years of treatment.  The hell that cost Ben his ability to empty his bladder on demand, that cost him IQ points.  During treatment Ben over seven months of his life on steroids.  Steroids make Ben psychotic.  Raging, out of control, sleepless, psychotic.  In fact, after his most recent surgery, when he mistakenly got a dose, the anesthesiologist considered his reaction so severe that she recommended listing steroids as an allergy because her professional opinion was that one dose severely jeopardized his health.  He had over 200 doses during cancer treatment.

There is more, so much more.  My child, my baby, has endured far more than most people do in a lifetime, and he’s only ten.

Childhood cancer is hideous, vulgar, horrifying.  Don’t ever let a sweet photograph of a smiling bald child fool you, they are enduring hell, nothing less.

So far in September, I have walked/run 46 miles for Alex’s Million Mile March.  Would you please consider donating to this event, and help me work toward ending childhood cancer hell?


2 thoughts on “Down Syndrome and Leukemia

  1. Hi! My sons name is Alex. He is 4 years old and was dx with ALL in January 2016. He has Down syndrome and hypothryroid too. He also suffers from severe CVS. His episode are very rough on him and take it out of him for 5-7 days. They happen every 8-10 weeks. Since starting cancer treatment he now has adrenal issues too. Would love to chat more. Email me at


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