You may have seen a lot of gold ribbons on our profile pics and that is because September is Childhood Cancer Awareness Month. . I’m never really sure whether to consider myself a cancer mom. I’m a brain tumor mom. In my mind, there is a difference, but in the brain tumor world, that concept can be debated.
When my son Alex was diagnosed with a benign brain tumor, I thought they would just take the sucker out and on we went. No chemo, no radiation, just a blip on the radar. The key word: benign. Not cancer.
But a the waterfall of issues emerged. Destroyed pituitary gland, inability to manage fluid balance in the body, hypothalamic damage that can result in insatiable hunger and interminable weight gain, temperature dysregulation, narcolepsy, chronic fatigue, adrenal insufficiency which can be fatal in emergency situations, behavior issues and the list when on.
But still, anytime the word cancer, or similar terms like oncology, came up, I went into a tailspin. “It’s not cancer, right?” I would repeatedly ask the nurses or doctors.
A nurse in oncology at Johns Hopkins told me “we consider all brain tumors to be cancer.”
When it comes to the brain and the delicate and intricate structures, brain tumors seem to sit outside the standard explanations of cancer and not-cancer. The definition of brain cancer is the ability for those cells to invade other structures. Many benign brain tumors, however, can regrow in place and still invade other structures in the brain. This is a gray area in the brain tumor world.
Why does this gray area matter? (lot’s of brain puns)
First of all, just like their malignant counterparts, benign tumors can be deadly. And patients diagnosed with these tumors tend to feel that the general view is that benign means fine. Which is a tough pill to swallow when you are facing a brain tumor battle.
Dr. Harvey Cushing, the father of modern neurosurgery once termed craniopharyngioma, a benign brain tumor that largely affects children, “the most formidable in intracranial tumors.”
Collectively, brain tumors have exceeded leukemia in the cause of death in children ages 0-19, and more research funding is desperately needed. Pediatric brain tumors are different in presentation than adult tumors, requiring independent research initiatives. A cure is certainly a goal, but a far more reachable goal is finding better treatment options that don’t cause the long term side effects that kids that survive brain tumors face.
Each year, steps are made towards that goal. Our hope is with the recent passing of the Childhood Cancer STAR Act, we will start seeing more pediatric brain tumor research opportunities
Thank you for your ongoing support and please take time as we end out this September to remember our survivors and angels that have battled all forms of cancer.