I witnessed the mass on my son’s brain from a small booth in the CT room. It was evident that the golf-ball-sized circle on one side of the image was not a positive sign. When we arrived at the hospital emergency room, my 8-year-old son was unresponsive and experiencing a silent seizure. I didn’t need the doctor to confirm it; I already knew he had a brain tumor. This was just the first of many diagnoses we would face as we dealt with a tumor that was considered “the good kind.”
Approximately 5,000 children are diagnosed with brain tumors each year, and about 37% of those cases are classified as low-grade gliomas, often referred to as “benign.” However, this label effectively undermines the years of toxic treatments, side effects, and long-term challenges experienced by both children and families. Children with low-grade brain tumors often endure multiple intense treatments and surgeries that continue long after the initial diagnosis. In my son’s case, a 10-hour surgery with a 99% cure rate resulted in immediate cognitive and physical issues, throwing us into a race to recover from the so-called “benign” tumor. We scheduled therapies, tutors, and individualized education programs while closely monitoring his residual tumor through MRI tests and in-patient electroencephalograms (EEGs), constantly managing symptoms and side effects and reminding ourselves how lucky we were that it was benign.
Three years later, my son’s tumor reappeared, accompanied by tiny “benign” tumor friends in his spine and other areas of his brain. This time, there was no surgical option, and we found ourselves in an oncology office contemplating standard chemotherapy or targeted inhibitor drugs, neither of which offered a likely cure. It quickly became apparent that “benign” when it comes to tumors in the brain is a misnomer. While these tumors may grow slowly and steadily, they are far from harmless. They can cause severe neurological repercussions if left untreated and also result in physical damage from the treatments themselves.
In the medical field, the Occam’s Razor theory suggests that the most probable explanation is usually the correct one. However, in our experience with so-called benign tumors, we quickly learned to expect the unexpected. We lost faith in the language and knowledge we had once believed in so strongly. The relief we initially felt at the benign diagnosis transformed into frustration as we navigated the slow and grueling treatment that seemed more aligned with higher-grade cancers. We lived in a constant state of uncertainty, always on guard against the hidden dangers lurking beneath the surface of our lives. We became part of a community of parents who face the benign every day, in a world that struggles to comprehend the true nature of these battles.
My son started taking inhibitor drugs, a newer form of oral chemotherapy that targets a mutation in his original tumor to inhibit growth. This treatment came with a range of side effects that kept us in close contact with his medical team and local emergency room. We had to pause treatment multiple times due to issues of toxicity. Fortunately, we were one of the lucky families, as most insurances do not cover these newer treatments and instead require children to undergo two years of standard chemotherapy with all its debilitating and long-term repercussions before considering the more expensive and less invasive alternatives. Just as my son was preparing for chemotherapy port-placement surgery, we received the news that our insurance had approved the inhibitors after three appeals by our doctors.
During our first MRI after starting treatment, the doctors were pleased to report that things appeared “stable.” However, I wanted the tumors gone completely. I longed for that “ringing-the-bell” moment when we could confidently say that there was no trace of the tumors in his spine or brain. Despite their insistence that stability was a positive outcome, I remained skeptical. In online support groups and chats, I connected with other parents who had been fighting benign tumors for years. They constantly switched treatment protocols as the tumors changed, subjecting their children to chemotherapy, inhibitor drugs, experimental protocols, and multiple surgeries in the hopes of halting the tumors’ relentless progression. I realized that the term “benign” needed to be reevaluated to reflect the true nature of these prolonged battles with low-grade tumors.
Although the overall prognosis for pediatric low-grade gliomas is generally favorable, depending on the location, they can still cause blindness, paralysis, cognitive decline, long-term neurological issues, and even death. Treatment over several years often does not eliminate the tumors; it merely keeps them stable for a short period before they return. When we finally stopped treatment, we were warned that the tumors could resurface. According to our doctors, the goal was simply to keep the tumors at bay until our son reached adulthood, as pediatric brain tumors often miraculously stop growing at that point. By our calculations, this meant another eight years of monitoring, waiting, and watching. Now, at 17 years old, my son has taken control of his own narrative. During a recent MRI, he urged his oncologist to resume treatment, as he was experiencing alarming symptoms. Although the MRI did not reveal any new growth, we all shared the fear of the zebras, and my son grew weary of waiting for what he believed was inevitable. I fully understand his sentiment and frustration. In Dante’s Inferno, the sinners who stand in the vestibule of hell suffer immensely as they watch doomed souls cross the river towards even greater suffering. Dante, in 1320, understood the desire for a hell that might be torturous and bitter but still preferable to endless waiting and watching. The battle against pediatric low-grade tumors has certainly come a long way. New imaging technologies and monitoring protocols make it easier to detect these tumors early on, before any changes or growth occur. Additionally, new drug trials and targeted therapies offer promising results with fewer severe side effects, improving the quality of life for pediatric patients who endure years of medical interventions and monitoring. While this progress is important and encouraging for parents advocating for their children with brain tumors, more must be done to eradicate these devastating tumors. The true magnitude of a benign brain tumor must be recognized.
It has been eight years since I first saw that CT scan, and I am still here, staying updated on new studies and trials, monitoring symptoms, and studying imaging reports. And I wait for the zebras. Adina Ciment is a writer, educator, and mother of five from South Florida. Her powerful collection of essays, “Wasn’t Expecting This,” chronicles her transformative journey as a woman and mother following her breast cancer diagnosis and her son’s brain tumor diagnosis. The book will be published by The Journey Institute Press this winter. Through her educational company, The Raven Writing Co., Adina empowers students to develop their writing skills and prepares them for college, while also inspiring readers to embrace resilience in the face of unexpected challenges. You can find her on most social media platforms as @aciment and on her blog at writingelves.com.
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