A Patient’s Perspective: Talking To Your Kids About Your Diagnosis

“And my style of telling them that is not to just tell them, but show them in different ways that I’m still the same and funny, quirky dad that they’ve always known.”

Whenever Gendron wanted to exude strength, he recounted often going down on the floor and doing ten push-ups, thinking, “Yep, your dad’s still tough. He’s got to get through this.”

Despite facing numerous challenges, he remained determined to persevere while battling an oligodendroglioma—a rare brain tumor that develops in oligodendrocytes, the cells responsible for supporting nerve cell function.

The term oligodendroglioma can be broken down to understand its meaning: “oligo” means “few,” and “dendroglioma” refers to a tumor arising from oligodendrocytes.

Gendron, a dad determined to confront every challenge without letting anything weaken his resolve, then offered powerful advice, telling us, “Positivity is a huge tool in your toolbox. Always keep that at the forefront—not just for you, but for your family members, and for the young children, nephews, and nieces.”

He also credits his cancer journey with teaching him the value of how to embrace acceptance.

“It’s my job as a patient to be a patient… I’m in this spot because I’m in this spot. There’s really no explanation. I can ask, God, why me? But then I think that also is a question for me,” Gendron says.

“What can I do as a dad, a neighbor, a coworker, and a member of my community to show people that I can take this full on and I can do it. It’s kind of like any task that you’re given, you could complain, you can moan. And that’s allowed.”

Acknowledging that it’s completely acceptable to vent to the right people, he admits he choose to emphasize optimism and show others that he’s confronting his illness with courage.

“I’m not giving up. I’m not giving down,” he adds.

Recalling the uplifting Gym Class Heroes song “The Fighter,” Gendron said, “It talks about how you’re going to get scars, give me scars, give me pain, but people are going to see you walking around and they’re going to say, ‘there goes the fighter.’

“And I feel like that encapsulates the whole process for me. I have to keep up this non facade. I have to just keep up this attitude that I’m a fighter, I’m going to keep fighting and pushing forward every day when they knock me down. I’m going to get back up. I’m going to punch me in the face. I’m going to turn my face back and look forward to the next thing that I have to do.”

Gendron—who considered himself healthy at the time of his diagnosis, as he had never had any health issues and he was his son’s soccer coach— ultimately battled an IDH-mutant oligodendroglioma, with surgery, chemotherapy and proton radiation therapy.

Molecular Testing for IDH Inhibitors in Glioma Patients

Following his diagnosis in December 2022, and the completion of his treatment plan in 2023, his tumor had both shrunk and stabilized. He’s now getting routine checkups to monitor whether the oligodendroglioma regrows.

Gendron, who overcame the disease with the support of his care teams at the Mass General Brigham Cancer Institute, has since returned to coaching soccer and enjoying his favorite activities—rock climbing and snowboarding—all while being a rock-star dad.

For anyone coping with an illness as a parent, like Gendron did, licensed clinical psychologist Dr. Marianna Strongin encourages how important it is “to talk about your feelings with your immediate family.”

“Talking about difficult things does not cause more anxiety,” Dr. Strongin previously said in an advice column for SurvivorNet.

“It is NOT talking about the very thing that we are all afraid or worried about that causes our body to feel dysregulated (unable to manage emotional responses or keep them within an acceptable range of typical emotional reactions) and anxious.”

RELATED: ‘Strong in Cancer’: Navigating New Relationships and Motherhood While Fighting Cancer Is Challenging. We Offer Solutions.

Specifically, with patients who may be scared to talk to their children about a diagnosis, Strongin said children can pick up on their emotions, so it may help to check in with yourself beforehand.

“Having these conversations may bring up deep emotions you may have stowed away. There is nothing wrong with showing our emotions to children as long as we can remain calm and give them a sense of safety,” Dr. Strongin said.

Understanding Gliomas

A glioma is a type of tumor that originates in the central nervous system, specifically in the brain or spinal cord. They originate in glial cells. Glial cells are supportive cells in the brain which serve to protect and maintain the neurons. They perform these tasks by maintaining the right chemical environment for electrical signaling, creating protective coverings for neurons, and removing debris and acting as scavengers. Neurons are the key cells in the brain and spinal cord which are responsible for transmitting messages in the brain. While the signals and messages that allow you to think, move, and speak are created by neurons, the glial cells are critical in maintaining brain function.

So essentially, a glioma is a tumor that comes from the brain’s own support cells.

“Glioma is a broad term that refers to a whole range of different types of primary brain tumors,” Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, tells SurvivorNet. “So, they’re tumors that originate in the brain and very rarely spread outside the brain to other parts of the body.”

Those glial cells, like many other cells in the body, have the potential to grow abnormally and form a mass, and that is when a glioma is formed. Gliomas, as they arise from the brain or spinal cord, are considered a primary brain tumor. They do not spread from elsewhere in the body.

Relative to other cancers such as breast, prostate, and lung, primary brain tumors are relatively uncommon with 80,000 diagnosed per year in the United States. Of the primary brain tumors diagnosed each year, gliomas comprise approximately 25%.

Gliomas: Benign vs. Malignant

To answer this question it is important to understand what it means for a tumor to be cancerous versus benign. A benign tumor often grows slowly and has clear borders, meaning it does not invade into surrounding tissue or other parts of the body. Meanwhile when something is described as cancerous or malignant it often grows more quickly and has a propensity to invade into surrounding tissue and spread to other sites of the body.

That being said, gliomas can vary widely in their behavior, meaning some are benign while others are considered malignant or cancers. Whether a glioma is benign or malignant depends on several factors including its type and grade.

Glioma is a general term that describes several different types of tumors. The different types of glioma depends on which specific glial cell is involved. Examples include:

• Astrocytomas – Gliomas originating from astrocytes, a type of glial cell that maintains the chemical environment around neurons and provides nourishment
• Oligodendrogliomas – Gliomas from oligodendrocytes, which are glial cells that create the myelin sheath that insulates nerve fibers and make neurons transfer signals more quickly and efficiently
• Ependymomas – Gliomas that from ependymal cells, which are cells that line the cavities of the brain and spinal cord and produce cerebrospinal fluid

Each of these types of gliomas behaves differently and can be considered more or less malignant or aggressive. Each type of glioma is typically classified further by their grade, which is a measure of how aggressive the tumor is.

Diagnosing Gliomas — Resections and the Grading System

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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