“It would be the first of many diagnoses as we battled a tumor that was supposed to be ‘the good kind.'”
I saw the mass on my son’s brain from the small booth in the CT room. It didn’t take much to realize that the golf-ball-sized circle on one side of the image was not a good sign. We had arrived at the hospital emergency room with my unresponsive son, age 8, in the midst of a silent seizure, and even before it officially came out of the doctor’s mouth, I knew he had a brain tumor.
That would be the first of many diagnoses as we battled a tumor that was supposed to be “the good kind.” From my ignorant world of strep throat and stitches, I knew that “benign” was the word one always wanted to hear when talking about cancer and tumors. It was the blessing that came after the scare, uttered amid sighs and sobs of relief, diagnosing patients with the best-case scenario.
Approximately 5,000 children are diagnosed with brain tumors each year. Of those, roughly 37% will be low-grade gliomas, typically categorized as “benign” — a form of medical gaslighting that belies the years of toxic treatments, side effects and long-term survivorship issues for families and children. Children diagnosed with low-grade brain tumors can face multiple, intense treatments or surgeries that continue for years after the initial diagnosis.
My son’s tumor had a 99% cure rate through surgery. They go in, remove the mass — like a questionable mole — and we ostensibly live happily ever after. But that 10-hour surgery resulted in immediate cognitive and physical issues for my son that sent us scrambling to recover from the “benign” tumor. As we scheduled therapies, tutors and individualized education programs (IEPs), we continued to monitor his residual tumor with MRI tests and in-patient electroencephalograms (EEGs), managing symptoms and side effects while reminding ourselves that, luckily, it was all benign.
Three years after his curative surgery, my son’s tumor returned, this time bringing tiny “benign” tumor friends to his spine and other areas of his brain in what they told us was leptomeningeal disease. The tumor that was supposed to be indolent and easily cured was back for seconds, and this time, without a surgical option, we found ourselves in an oncology office choosing between standard chemotherapy or targeted inhibitor drugs, neither of which would likely cure him.
Benign in the brain, I quickly learned, is a misnomer. It indicates the rate of growth: slow and steady. Not aggressive, but rather passive-aggressive — able to inflict terrible neurological repercussions if not treated but also causing other physical damage from the treatments themselves. In short, there is nothing benign about them.
In medicine, the Occam’s Razor theory of most-possible explanations guides the standard of care, operating on the premise that if there are hoofbeats, it’s safe to assume they are coming from horses, not zebras. In our experience with the benign, we began to always assume zebras.
From a tumor that was never supposed to recur, let alone spread, we lost faith in the language and knowledge that we had been so sure of for years. The relief at benign gave way to frustration at the agonizingly slow treatment that resembled higher-grade cancer protocols, the chaos factor in tumors that didn’t behave and the seemingly lifetime sentence of walking on edge, constantly in a cold war state with something lurking under the surface of our lives. We were part of a new group of parents who deal with the benign every day in a world that cannot fathom what that means.
My son was on inhibitor drugs, a relatively new kind of oral chemotherapy that targets a mutation in his original tumor that triggers growth. It was a treatment that came with a host of side effects that kept us in constant contact with his medical team and our local ER. We needed to pause treatment three times because of toxicity issues. We were fortunate, though. Most insurances do not cover these newer treatments and instead require kids to “fail” two years of standard chemotherapy, with all the debilitating and long-term side effects that go along with that, before paying for these more expensive, less invasive options. My son had been scheduled for chemotherapy port-placement surgery when we received the news that our insurance — after three appeals by our doctors — approved the inhibitors.
The first time we had an MRI after starting treatment, the doctors happily reported that things looked “stable.” But I wanted the tumors gone. I wanted the ringing-the-bell moment when we could say there’s nothing in his spine or his brain, and, like that questionable mole, we only have the scar left to show for it. Regardless of their insistence that “stability is a win,” I didn’t buy it.
In Facebook groups and WhatsApp chats, I connected with parents who have battled the benign for years, switching treatment protocols every time the tumors changed, pumping their children with chemotherapy, inhibitor drugs and experimental protocols or multiple surgeries, just hoping to stop the steady progression of these tumors. “Benign,” I realized, is a term that needs to change to reflect the actual nature of these protracted battles with low-grade tumors.
Though the overall prognosis is good, depending on the location, pediatric low-grade gliomas can cause blindness, paralysis, cognitive degeneration, long-term neurological issues and death. Usually treatment over multiple years does not even eliminate the tumors but rather just keeps them stable, stopping the growth for a short time before they return.
When we finally stopped treatment, we were warned about that. The goal, according to our doctors, was just to keep the tumors at bay until our son reached adulthood because then, hopefully, these pediatric brain tumors would inexplicably stop growing. By our calculations, that meant another eight years of monitoring, watching and waiting.
Now 17, my son controls his own narrative. At a recent MRI, he asked his oncologist to please just start him on treatment again. He was having alarming symptoms, and though the MRI did not show new growth, we were all concerned. We feared the zebras. And my son was tired of waiting for what he felt was inevitable.
I fully understand the sentiment and frustration. In Dante’s Inferno, the sinners who stand in the vestibule of hell suffer tremendously as they enviously watch doomed souls cross the river to the lower levels of hell where worse suffering awaits them. Dante, in 1320, understood what it meant to desire a hell that may be torturous and bitter but still better than the endless watching and waiting.
Fighting pediatric low-grade tumors has certainly come a long way. New imaging technologies and monitoring protocols are making it easier to find these tumors earlier — before they change or grow — and new drug trials and targeted therapies are showing promising results with less severe side effects and increased quality of life for pediatric patients who face years of medical interventions and monitoring. Though this is important and encouraging for parents who will spend years advocating for their brain tumor kids, more needs to be done to eradicate these devastating tumors. More needs to be done to recognize the enormity of a benign brain tumor.
It’s been eight years since that first glimpse at the CT scan, and I’m still here, keeping tabs on new studies and trials, monitoring symptoms and poring over imaging.