It’s been six and a half years since that New Year’s Eve. The day that everything changed. The day that childhood cancer became a household word. The day that stretched out eternally with every detail etched permanently in my memory, as clearly as if I was living it today. If there’s ever been a day that I want to forget, that is the day. 

What Nobody Tells You When Your Child Has Cancer   www.herviewfromhome.com

My son, Benjamin is a childhood cancer survivor. At the precious age of three and a half years old, we were told that his bone marrow was full of leukemia. There were many things that we learned in those early days of living with leukemia. We learned that he would have to endure three and a half years of treatment, almost his whole life to date. We learned what blood counts meant, we learned about spinal taps and bone marrow aspirates. We learned too many things that parents should never, ever have to learn. We got books outlining everything you could imagine, but they left out one thing.

You never get over it.

Yes, we are looking toward seven years since diagnosis, and three years since he took his last chemotherapy pill, but every time he gets sick, cancer moves from the past back into the present. It looms large in our minds again, as large as the day it came into our lives. No, they never told us that once childhood cancer comes into your life it will be a constant companion for years to come. Though we no longer handle chemotherapy pills on a daily basis, the lasting effects of that chemotherapy have forever altered our child. He cannot be potty trained, he lost 20 IQ points. Every day is different because of childhood cancer. Everything.

We have moved from the comfort of knowing that things like childhood cancer happen to other people to knowing that it can and did happen to us. Everything we ever knew, our lives of comfort and normalcy were left behind. We are the 2%, not the 98%, and we will never again be the 98% of people whose kids don’t have childhood cancer. And we know that the sleeping dragon could awake at any moment and that leukemia could leap from it’s place in our past right back into the present. 

No, we will never be the same. The paradigm has shifted, the ship has sailed. We are a childhood cancer family. 

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Alethea Mshar

Alethea Mshar is a mother of four children; an adult child who passed away of a drug overdose, one typical daughter and two sons who have Down syndrome, one of whom has autism spectrum disorder and complex medical needs. She has written "What Can I Do To Help", a guide to stepping into the gap when someone you know has a child diagnosed with cancer, which is available on Amazon, and is publishing a memoir titled, "Hope Deferred". She can be found on Twitter as leemshar, and blogs for The Mighty HuffPost as Alethea Mshar, as well as her own blog, Ben's Writing Running Mom on https://benswritingrunningmom.wordpress.com/. She is also on Facebook as Alethea Mshar, The Writing, Running Mom.

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