The Decision to Irradiate or Not to Irradiate My Daughter’s Brain Tumor

The decision to have his young daughter receive radiation for brain cancer was one of the toughest life decisions Mark ever had to make.

When my daughter Chloe was diagnosed with a rare and aggressive brain tumor, a supratentorial embryonal tumor with multilayered rosettes (ETMR), I was suddenly thrust into a whirlwind of medical consultations, statistics and survival rates. Amidst all the chaos, one decision stood out above the rest: the choice to irradiate or not to irradiate her 3-year-old developing brain. It was a choice I never imagined I’d have to make, yet one that would shape the rest of Chloe’s life… and mine.

Her oncologists presented a range of options, but the path forward wasn’t as clear-cut as I had hoped. I found myself confronted with the harsh reality of weighing potential short-term survival against long-term harm. Irradiation, while effective in prolonging life, and arguably the best weapon against her disease, threatened to rob Chloe of her cognitive abilities, her childhood and the future I firmly believed she deserved.

This essay serves as a reflection of the technical and emotional complexities that ultimately led me to choose that defied convention. In sharing this experience, I hope to shed light on the difficult choices parents face when survival battles with the hope of a life unburdened by the very treatment meant to save it. As I am not a medical professional, I do not intend this to be medical advice, but I do hope that sharing my journey helps other parents facing similarly difficult choices to feel informed, empowered and less alone in navigating the complexities of pediatric cancer treatment.

Chloe’s diagnosis of a supratentorial ETMR instantly placed us in uncharted medical territory. ETMR is a rare and highly aggressive type of brain tumor, known for its rapid growth and poor prognosis, particularly in children, according to a 2023 study published in Oxford Academic. For this cancer type, standard treatment protocols typically include surgical resection, followed by a combination of chemotherapy and radiation therapy, according to a 2022 study from Children. However, as I quickly learned, what is standard for adult patients doesn’t always apply to children, especially not to a child as young as Chloe.

Radiation therapy is considered one of the most effective tools for targeting residual cancer cells that surgery cannot remove, but it comes with significant risks for pediatric patients, I learned from a 2021 study published in Oxford Academic. The developing brain is particularly sensitive to the harmful effects of radiation, and in children under the age of five, those risks are exponentially higher, a researcher reported in a 2021 study in the Journal of Family Medicine and Primary Care. Cognitive impairment, developmental delays and the increased risk of secondary cancers later in life are just a few of the potential outcomes.

On top of that, Chloe had undergone a successful gross total resection (GTR), meaning the entirety of her visible tumor had been removed. The decision to add radiation seemed less clear-cut because of the GTR’s success, and the question of whether to subject Chloe to the risks of radiation weighed heavily on me. While the oncologists presented a strong case for using radiation to prevent recurrence, they expressed equal concern for her quality of life should it be used. I couldn’t ignore the potential long-term damage it could cause.

Chloe was treated at the Medical University of South Carolina Shawn Jenkins Children’s Hospital under Dr. Sandeepkumar Kuril. He presented me with two potential treatment options for her rare ETMR diagnosis: ACNS0334 and Head Start IV. Both protocols provided aggressive approaches to tackling this aggressive cancer, but they differed significantly in one critical aspect — radiation.

ACNS0334, a more conventional treatment protocol, included radiation therapy as part of its regimen, according to a 2022 study from Cancers. Radiation has been used for decades in treating pediatric brain tumors, which can target residual cancer cells that surgery and chemotherapy may leave behind. Head Start IV, on the other hand, avoided radiation altogether, relying on high-dose chemotherapy followed by autologous stem cell rescue, clinicaltrials.gov states.

As I pored over the handouts and explanations provided by Dr. Kuril, I delved deeper into the technical aspects of these treatments. My background as a nuclear engineer heavily influenced how I approached the decision. I understood the power of radiation — both its utility and its dangers — better than the average person. Radiation can be a highly effective tool in eliminating cancerous cells, but its side effects, especially in a developing brain, are profound and often permanent.

In a young brain, such as Chloe’s, radiation can disrupt the normal development of critical neural pathways, the 2021 study from Oxford Academic taught me. A child’s brain is rapidly growing and forming new connections at an accelerated rate, especially during the first five years of life. Radiation can interfere with this process, leading to permanent cognitive impairments. The risk of neurocognitive decline, including memory problems, difficulties with attention and learning and slower processing speeds, is significantly higher when radiation is applied to a developing brain, according to the study from the Journal of Family Medicine and Primary Care.

Research also shows that the younger the child, the greater the impact. For a 3-year-old like Chloe, radiation could compromise her ability to achieve age-appropriate developmental milestones, potentially affecting her language skills, spatial awareness and even her emotional regulation, I learned. Additionally, radiation increases the risk of secondary cancers which could emerge later in life as a direct result of the treatment, as the 2021 study from Oxford Academic stated. These long-term risks of radiation weighed heavily on me, as I analyzed the medical literature and case studies on radiation therapy in young children.

The technical knowledge I had gained in nuclear power school and my studies in nuclear engineering provided me with a solid foundation to break down these risks. In my training, one of the core principles was to minimize unnecessary radiation exposure, whether in a reactor environment or when dealing with the human body. The idea that even small amounts of radiation could have lasting impacts was something I had studied extensively. Radiation interacts with human cells by damaging DNA, which can lead to mutations and, in the case of a child’s brain, developmental setbacks that cannot be reversed, I learned from the Oxford Academic study. I applied this same risk assessment framework to Chloe’s case.

I pored over survival rates, treatment efficacy and potential side effects of both ACNS0334 and Head Start IV. The data show that although radiation might reduce the chance of immediate recurrence, the long-term cognitive damage could severely impact Chloe’s quality of life, even if she survived the cancer itself.

After days of exhaustive analysis, I ultimately chose Head Start IV. Its strategy of high-dose chemotherapy, while not without risks, seemed to offer the best balance of survival while preserving Chloe’s future cognitive function. The absence of radiation aligned with my understanding of minimizing harm while maximizing the treatment’s potential effectiveness.

However, after I had already made my decision, I was presented with conflicting information regarding an alternative approach involving a modified IRS-3 regimen. This protocol suggested that methotrexate, a key drug in the Head Start IV protocol, was ineffective against ETMR and recommended proton radiation therapy as part of the treatment. Proton therapy, although more targeted than traditional photon radiation, still posed significant risks to a child as young as Chloe. Proton beams are designed to deliver radiation directly to the tumor site, minimizing exposure to surrounding healthy tissue, but even this more refined technique comes with dangers, according to a study published in CNS Oncology.

The developing brain is so sensitive to radiation that even a highly targeted approach can lead to cognitive issues. Proton therapy’s advantages over traditional radiation lie mainly in its ability to reduce exposure to areas outside the tumor site, but the long-term effects of proton therapy on young children are not fully understood. Some studies suggest that the cognitive impairments may be similar to those caused by traditional radiation. As I continued researching this modified regimen, I couldn’t ignore the overwhelming risk to Chloe’s development and cognitive future.

Ultimately, I sought reassurance from additional experts in pediatric neuro-oncology. Dr. Girish Dhall and Dr. Jonathan Finlay both reaffirmed my decision to proceed with Head Start IV. They pointed out the limited data supporting the alternative IRS-3 approach and highlighted the devastating cognitive effects that radiation could have, especially for a child who had undergone a successful gross total resection, like Chloe. Their feedback gave me confidence that the path I had chosen, based on my technical understanding and careful analysis, was the right one.

Looking back, the decision to choose Head Start IV versus a more traditional protocol was one of the most difficult choices I’ve ever had to make. But ultimately, it was the right one for Chloe. She responded well to the chemotherapy, and although the journey was long and difficult, she was able to avoid the devastating long-term effects that radiation could have caused.

Chloe was randomized to three consolidation phases, each involving high-dose chemotherapy and stem-cell rescues. However, because of needing additional boosts during the first two phases, she only completed two consolidations. Despite this, the treatment was successful. The chemotherapy did its job, and to date, there has been no sign of recurrence. The absence of radiation in her treatment plan meant that, although the cancer was beaten back, her cognitive and developmental milestones remained intact. Today, Chloe is thriving in ways that I had once feared might never be possible if we had chosen the route to irradiate.

Additionally, because radiation wasn’t used as part of Chloe’s initial treatment, it remains a highly effective option in the event of a recurrence. In fact, radiation is likely to be even more effective now because she didn’t receive it before. She’s older now, so her brain development is more advanced at 6 years old, making her better able to tolerate the potential side effects of radiation if needed in the future.

In hindsight, the most difficult aspect wasn’t just the treatment itself, but living with the uncertainty and wondering if I had made the right choice. Even with my background in nuclear engineering, with all the data and statistics I had relied on to guide me, there was always that small, nagging doubt. What if the cancer returned because I chose not to irradiate? What if the chemotherapy alone wasn’t enough? It’s something I carried with me through every cycle, every scan and every doctor’s appointment. However, with every clean MRI, that doubt began to fade, and my confidence in the decision grew stronger.

Through this experience, I learned that making these decisions as a parent, especially when your child’s life is on the line, is never easy — even with all the available knowledge in the world. My technical background was invaluable in understanding the risks and benefits, but it was ultimately my role as Chloe’s father that drove me to make the choice that I believed would preserve not just her life but her future. The relief of watching her thrive today — seeing her play, laugh and learn — is the greatest validation I could ask for.

I have no regrets about choosing the path not to irradiate. While every parent’s situation is different, I believe the best decisions are made when we take the time to gather all the information, trust in our understanding and follow our instincts. For me, the data was clear, but so was my desire to give Chloe the best chance at a full life, unburdened by the harsh consequences of radiation.

This poem was written and submitted by Mark Younce. The article reflects the views of Younce and not of CURE®. This is also not supposed to be intended as medical advice.

References

“Embryonal tumor with multilayered rosettes: Overview of diagnosis and therapy” by Chadda KR, et al., Oxford Academic.

“Radiation in medical practice & health effects of radiation” by Jain S, et al., Journal of Family Medicine and Primary Care.

“Treatment of embryonal tumors with multilayered rosettes with carboplatin/etoposide induction and high-dose chemotherapy within the prospective P-hit trial” by Juhnke B, et al., Oxford Academic.

“High-dose chemotherapy in children with newly diagnosed medulloblastoma” by Lafay-Cousin L, et al. Cancers.

“Clinical management of embryonal tumor with multilayered rosettes: The CCMC experience” by Li Z, et al. Children.

“HeadStart4: Newly Diagnosed Children (10 y/​o) With Medulloblastoma and Other CNS Embryonal Tumors” by Patel P, Clinicaltrials.gov.

“Proton therapy for the treatment of children with CNS malignancies” by Sreeraman R, et al. CNS Oncology.

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