It’s almost the end of childhood cancer awareness month. Some folks will be relieved—no more depressing statistics about kids with cancer. But for some this month was just the start of a long journey, one they never wanted to be on.
Tonight I talked to a mom for nearly an hour. Never met her before. She’s a lot like many of you—married, homeschooling her two teenage boys and her little girl, trying to finish up her degree so she can get a better job. Husband works but they’re struggling with inflation and taxes and everyday life. Then a little over two weeks ago her 12 year old son had a bad cold that turned out to be cancer. A tumor near his heart. Tests, hospitals, clinics, more tests. Learning a foreign language to be able to comprehend the incomprehensible: PICC line, lumbar puncture, ports, T-cells, CBC, blasts, chemo phase, intrathecal, bone marrow, neutrophils, AGC. knowing you need to ask people for help but not knowing how.
The nightmare of insurance (Medicaid) and bills and using up what little PTO dad had so he could be with his son. And who watches the other kids on chemo days? What about mom’s degree? Laundry? Grocery money that went to pay medical bills? The other two kids? How does mom not feel guilty or not blame herself? What about the marriage? How do they deal with this? It’s not a hallmark movie. It’s real life. Friends say “let me know what I can do” but you can only handle so many tuna casseroles and lasagna dinners in aluminum foil trays. You need someone to step in and be you. To listen, to talk, to go out to coffee with.
People ask “how do you do this?” There’s no answer to that. You just do it. Because you must. When parents are dealt the childhood cancer card, they feel their life spinning out of control. Because it is. The only thing they can do is pretend to be in control of the disaster. Calm. Clear headed. Decisive. When inside every nerve is screaming and you just want to punch someone.
Childhood.
Cancer.
Awareness.
Think about those three words.
Childhood ends when a child is diagnosed with cancer. That child is forever changed. I know. I saw my daughter go from being 12 to 40 in a matter of hours. A child doesn’t understand death or life threatening illness—children are immortal, living in a Peter Pan world. Until that child sees cancer through our eyes, our tears.
Cancer is such an ugly nonspecific word that evokes dread and fear, a catchall term for any disease, growth or condition that takes longer than 2 minutes to explain. Just hearing that word after the word “childhood” is an oxymoron and makes me want to vomit.
Awareness. Only the families and the healthcare teams have awareness of childhood cancer and the devastation it causes. Because if the majority of the world was as aware of childhood cancer as we are, there would be such an outcry for research and funding the pharmaceutical companies would be falling over themselves to develop new treatments. Aware? You bet I’m aware; so is my daughter. And the countless families affected every single day.
And there is a family in Missouri who has more awareness than they bargained for—a childhood stolen by cancer during childhood cancer awareness month.
