September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Ann Folan
It was 2001 and he was 15 months old. He was all big eyes and chubby cheeks and he had neuroblastoma, a particularly deadly form of childhood cancer. Don’t Goggle it, we were told. It will only scare you. They told us about prognosis and staging and treatments and effects and how much time you will be spending in the hospital. And it is really a lot of information and you get a little numb.
And then the oncologist looks right at you and says “or you can do nothing, and take him home and he will die.”
He will die. He was 15 months old and without forever altering the course of his life, he will die. Your choice.
So you choose. And it shakes you the hell out of the la la land you have been living in, helps you strap on your kick-ass boots and get to work. Biopsy and port placement and chemotherapy and hair loss and nuclear scans and fevers and hospitalizations and tumor removal surgery. One sentence encompassing layers of hell I hope you never know.
And then you come out the other side and he lives. He lives and he is changed and you will forever wonder who he might have been. How much of who he is was forever altered by what happened to him? What you gave them permission to do. You signed that form saying it was OK, you let them poison him. It is crushing, the guilt. Not that he survived, for that you will be eternally thankful, but what you had to do to get him there. What you would have begged them to do. You chose. You find a way to live with that and you move on.
It is 2013. His little brother is 10 years old. A ginger-headed, freckled-faced boy full of life and energy. And they say it again. Only this time it is his brother and this time it is langerhans cell histiocytosis. Even more rare than his brother’s neuroblastoma and it is eating away at his bones, making holes straight through them. Again we make that choice, we cannot do nothing. But this time will be easier, we already did the hard stuff, we will be ok.
We were wrong.
It is so much harder the second time around. He is older, he needs to understand, we need to explain, he has friends that are devastated and we are so damn tired. And it is so much worse. Add steroids to the chemo this time and it is so not good. A blood clot in his brain, days in intensive care with pain and pressure so bad it swells his eyeballs in his head, spinal taps and a new chemo plan. It is so much worse the second time around.
And then you come out the other side and he lives. He lives and he is changed and you will forever wonder who he might have been. How much of who he is was forever altered by what happened to him? What you gave them permission to do. You signed that form saying it was OK, you let them poison him. It is crushing, the guilt. Not that he survived, for that you will be eternally thankful, but what you had to do to get him there. What you would have begged them to do. You chose, again. You find a way to live with that and it’s a little harder to move on.
The one comfort we had with everything we went through in 2001, was we had insulated our family and friends from ever facing the same. What are the chances of two kids in our intimate circle facing the same diagnosis? I had actually spoken that sentence out loud. At least we had that. And then it happened to us again. We were not saved by the odds, it struck us again. One family, two different kids, two different diagnoses. We struggle to move on, to keep going. But we are tired.
We are too tired to make the whole world understand that yes, some kids live after treatment. They live with a forever altered future of long term effects from learning issues to growth issues to fertility problems. They live because we made an impossible choice. And some parents make that same impossible choice and lose their children anyway.
We are too tired to explain that the treatments for kids are barbaric and ancient and funding is too little and the big guns and deep wallets don’t give any money to kids’ cancer research. They use little bald kids in their advertising to pull at your heartstrings and then give us less than 4% of their total budget. Less than 4% for ALL childhood cancers. Less than 4% to help kids like mine. To save parents like us from impossible choices.
I know you don’t want to think about it because it is hard and it is scary and maybe it will never happen to you, to your family, to your kids. What are the odds? What are the odds of two brothers, two different diagnoses, twelve years apart? What are the odds?
I am so tired, weary down deep in my soul. But I tell you our story because it is out there, it strikes without reason or predictability. Sometimes, it strikes twice.
And I have another son you know, three boys in all. A beautiful, amazing boy that has known very little of life without one of his younger brothers living in mortal danger. Never known a life without parents spending too much of their time at hospitals and clinics and doctors’ offices. And I live with the constant background fear, because I know it is out there and I know we are already so far outside the odds, I know enough to fear. Because, what are the odds?
Once upon a time I was able to live in la la land, until I had to make a choice and then make it again. A choice to act and forever change their life or to do nothing and let them die. I live in fear of the choice that isn’t a choice at all.
Ann Folan is a native Chicagoan. Her immigrant Irish parents settled on the northwest side and she never strayed very far from that epicenter. She and her husband John run their own business and focus on their three amazing boys.
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Filed under: Childhood Cancer Stories 2015