Confronting a rare brain tumor at 21: ‘Well, I got it. Let’s get rid of it’

July 5, 2022
Family dog Toto with Jack O'Donnell, who is living with oligodendroglioma.
The family dog, Toto, has been a comfort to Jack O’Donnell as he recovered from surgery and radiation just after he turned 21. Jack has learned to live with oligodendroglioma, a rare form of brain cancer. Photos by Sonya Doctorian, UCHealth.

Jack O’Donnell allowed himself a sliver of cake and the luxury of opening a few gifts on his birthday in February. But he forfeited the typical rites of passage that many of his peers enjoy upon turning 21.

The next morning, Jack would head to the hospital for brain surgery, where doctors would operate to remove a fist-sized tumor that had been discovered just weeks before.

For the Centennial resident and 2019 Eaglecrest High School graduate, the journey from thriving, healthy college junior to thriving, healthy brain cancer survivor has taken him down a path few his age could imagine.

“I never really had any medical problems. I haven’t even had my wisdom teeth out,” Jack said. “Then I went to having to tell my parents: ‘I’ve got an issue – they found a mass in my brain.’”

That mass was oligodendroglioma: a rare, incurable but operable brain cancer that makes up only 4% of all brain tumors and typically strikes men ages 40 to 60.

“This is a type of brain cancer, but this is a treatable type of brain cancer. We can’t give him a cure, but we can put him into remission,” said Colin Catel, a UCHealth physician assistant, who has been treating Jack along with Dr. Kevin Lillehei, the neurosurgeon who performed Jack’s surgery at UCHealth University of Colorado Hospital.

Living with oligodendroglioma

But just as he had the bad luck to be staring down a daunting trial as a college junior, Jack also had the good fortune to have a loving family — his parents and three older sisters who have been at his side — along with highly skilled and caring doctors and staff to treat him.

Jack O'Donnell, who is living with oligodendroglioma, in front of his car.
Jack O’Donnell was driving to his college internship in Oklahoma City when pressure from a brain tumor affected the vision in his right eye. An MRI revealed oligodendroglioma. He has surgery to remove the tumor the day after his 21st birthday. “I wasn’t going to let it get to me. When I first learned I had the tumor, I was a little like, ‘Why me,’ then I thought, “Well, I got it. Let’s get rid of it.”

“We were very fortunate that his tumor was diagnosed quickly and that he received such great medical care,” said Jack’s mother, Maria O’Donnell, a recently retired teacher.

It’s also helped that Jack has looked at cancer as more of a test than a tragedy, a disruption instead of a disaster, a complication not a catastrophe.

“I wasn’t going to let it get to me. When I first learned I had the tumor I was a little like, ‘Why me,’ but then I thought, ‘Well, I got it, let’s get rid of it,” he said.

A competitor’s treatment plan

A huge sports fan, especially his beloved Oklahoma State University Cowboys where he attends school, Jack understands the components of a good game plan: patience, perseverance and purpose, all of which he possesses in spades.

“I’m just really proud and impressed that he hasn’t cursed his fate or defined himself as a victim,” said his father Casey O’Donnell, an industrial engineer. “He faced it and felt the fear, but then said, ‘OK, what do we need to do about it?’ He’s really grown up in a short amount of time and has handled the whole situation with a lot of courage and maturity.”

Jack is not one to be easily disappointed or dissuaded, more annoyed at the inconvenience and disruption the tumor has brought to his life.

“Everything was totally normal before this happened. I was happy and ready to start out on my own.”

Strange symptoms of oligodendrogliomas

Jack is used to upheaval these past few years. In the fall of 2019, he packed up his 2008 red Mustang and headed east on I-70 toward Oklahoma State, where he would pursue a three-year degree in engineering graphics and design drafting. His favorite class in high school had been architecture, and he was always good with his hands – whether it was throwing out a runner when he played third base or working on his computer Photoshop program.

He flourished at OSU, but by spring, the COVID-19 pandemic cut short his time on campus, and like his peers throughout the county, he came home to finish freshman year online.

Jack O'Donnell, who is living with oligodendroglioma, cruises through his Centennial neighborhood in his 2008 Mustang.
Jack O’Donnell cruises through his Centennial neighborhood in his 2008 Mustang. At only 21, Jack is learning how to live with oligodendroglioma, a form of brain cancer that can be managed but not cured.

A summer job at FedEx lasted through the fall as he stayed home and continued school online. He was able to get back to campus to complete his sophomore year, and after another summer stint at FedEx, he was eager to start his third and last year in August 2021.

When Jack came home for Christmas, all was well. His Cowboys were on a football winning streak, “tearing it up” as he remembers. “It was awesome.”

“It was probably the best semester I’d had. School was good. Everything was good.”

Not perfect though. He was experiencing strange symptoms: An occasional numbness in his left foot was easy for him to downplay since it came and went; but a strange sensation in his right ear that sounded like the “whooshing” when he was a child and put his ear to a seashell was harder for him to dismiss.

“I could hear the ocean all day, every day.”

A trip to the doctor, a diagnosis of plugged sinuses and a prescription for nasal allergy spray put that worry on the back burner.

But a blind spot in his right eye caused concern for him and his parents. The family thought it might be a sign of migraines, which his mom suffers from, or just eye strain and the need for glasses. When it went away the next day, so did their unease.

Plus, there was a lot to be grateful for: a New Year’s Day trip to the Fiesta Bowl in Phoenix, where Oklahoma State beat Notre Dame; an upcoming internship at an engineering firm in Oklahoma City; a spring graduation and his diploma.

In mid-January he again packed up his Mustang and headed east on I-70, this time with an air mattress and a lawn chair that comprised the bulk of his apartment furniture. He was excited to head to Oklahoma City for his internship.

“I’m pulling out of my driveway and saying goodbye, which is hard, and it’s just when everything started to go haywire.”

On his own when he gets some troubling news

By the time he got to Kansas to stay with a cousin for the night, his right eye “went crazy” and he was seeing multiple images out of it, finally making it safely by driving slowly and covering it with his hand and using just his left eye. What Jack was experiencing was a visual seizure.

“It was most frightening drive of my life. It was terrifying.”

Still, when he woke the next day to clear vision, he continued his journey to Oklahoma City, settled into his apartment and began his internship. His first day went well, but on the drive home, he experienced the same strange phenomenon in his right eye.

Then began a series of visits to a local optometrist, an ophthalmologist, a diagnosis of acute optic neuropathy and a referral for an MRI, when he was told he had a large and aggressive mass on the premotor cortex on the front-left side of his brain.

Together with his family, Jack decided to head back to Colorado and the Anschutz Medical Campus, where the reputation of UCHealth and Dr. Lillehei led them for treatment options. Jack had a “functional MRI,” during which a letter was flashed on a screen and Jack would think of as many words as possible that began with that letter. The screen would also flash phrases and he was told to think of the answer. These tests helped neurosurgery providers determine how far they could take the surgery into the tumor without affecting the portion of his brain that controls language.

Each hemisphere of the brain controls functions on the opposite side of the body, which is why the pressure from a tumor on Jack’s left side was affecting his vision in his right eye and his hearing in his right ear. Strangely, Jack never had the usual indicators of a brain tumor: headaches and seizures.

His team was hopeful, as his tumor was not touching parts of the brain that regulate core functions, skirting within a hair’s breadth of the portion controlling language.

“Of all types of primary brain tumors, Jack’s is one of the most favorable type that is amenable to treatment with a good prognosis,” Catel said.

Waiting was tough on the family. Maria relied on faith, family and friends and was grateful for Caring Bridge which provided updates on Jack to others. Casey said getting support, educating himself and connecting with other parents through Oligo Nation were comforting.

For Jack, the countdown was rough: “I was almost numb that whole week. I was just waiting for it to happen. My 21st birthday was brain surgery. Not the most fun birthday I’ve ever had.”

Operation and recovery for his rare form of cancer

During the surgery, Lillehei used images from an MRI done beforehand, along with 3-D images and software that precisely mapped Jack on the operating table, similar to the way a GPS system helps with directions. Using cameras pointed at Jack’s face and skull while he was locked into place, this image-guided surgery allowed Lillehei to track Jack’s brain on monitors in the operating room in real time.

The surgical team also used sodium fluorescein, a dye that causes cancer cells to glow much more than in normal tissue under a blue light projected from a microscope, which was injected into Jack’s brain, Catel said. This procedure makes the tumor tissue visible and distinguishes it from the healthy portion of the brain, so Lillehei could better target cancer cells during surgery.

After a four-hour procedure, Jack woke up and said, “We did it mom, we did it.”

Ever the sports fanatic, Jack’s goal was to be out of the hospital and in his family’s living room to watch the Super Bowl. And two days later, that’s where he was.

After recuperating through late March, he began daily 5-minute radiation treatments through early May, wearing a custom-made “Darth Vader” mask to protect his face, while joking with the nurses that the machines they used were similar to the CAD ones he uses for his coursework. Simultaneously, he completed a daily oral chemotherapy.

While he has a large, curved scar from his left ear to his forehead and lost his hair temporarily from the radiation, neither is noticeable when he wears his sports cap – along with his huge grin.

Back to the future

During the next year, Jack will get four MRIs and complete a week of oral chemotherapy each month. In the coming years, he will continue with routine MRIs and similar treatment if needed as his providers monitor his progress. Catel said that could include more surgery, radiation and chemotherapy.

“He’s an amazing young man and he’s overcome quite a few challenges,” he said.

As Jack has recovered and gained strength back, he was able to hike nine miles at the Aurora Reservoir with his mom on Mother’s Day and play pickleball with his dad. His parents are proud of their son for the strength he’s shown during the entire ordeal. As for Jack, he’s ready to get on with a life that was disrupted — but only temporarily.

And after a trip to Yellowstone National Park to kick off the summer, he again packed up his Mustang and headed to Oklahoma City to begin his internship, along with a postponed graduation and a job once he has his diploma in hand.

Jack said he would love to design an athletic stadium that would stand as his legacy, something future generations of sports fans like himself would enjoy.

“You’ve just got to have confidence in yourself and put trust in your doctor and have the belief that you will come out just as good as ever on the other side.”

About the author

Mary Gay Broderick is a Denver-based freelance writer with more than 25 years experience in journalism, marketing, public relations and communications. She enjoys telling compelling stories about healthcare, especially the dedicated UCHealth professionals and the people whose lives they transform. She enjoys skiing, hiking, biking and traveling, along with baking (mostly) successful desserts for her husband and three daughters.