Diagnosis & Treatment

Glioblastoma & Leiomyosarcoma
Medical Center
University of Kansas Health System - KS, Hoag Memorial Hospital - CA, MD Anderson - TX
Dr. Roukoz Chamoun - Kansas City, KS
Dr. Amandeep Kalra - Kansas City, MO
Clinical Trials
Medical Treatment
Gamma knife
Details of Treatment
Chemo and Optune for 2 years, 35 radiation sessions, and the Gamma Knife procedure.
Medication During Treatment
Depakote, Keppra, TMZ (Temozolomide, Temodar)
Alternative Therapies During Treatment
Positive Thinking
Cancer made me a better husband, friend, and family member. It gave me the opportunity to dedicate my life to something truly meaningful.
WHAt helped me during treatment
Favorite Quote
If I’m rare enough to get it I’m rare enough to beat it. F*CK CANCER.
Advice for Others
Don’t use Google and don’t subscribe to what they say. This is your fight. I'm living a life that they told me I never would.

My Story

While skateboarding a few years ago, D.J. noticed a nagging pain in his left knee. What doctors thought was a cyst turned out to be leiomyosarcoma, or smooth tissue cancer.

They caught it early, and two surgeries later, D.J. thought he had cancer beat. In the coming months, he founded Journey Pro, proposed to his girlfriend, and bought a house.

Then the auras began. D.J. would walk into a room and be overwhelmed by déjà vu and a deep sense of dread. None of the symptoms or treatment side effects he’s experienced since have disturbed him as much as these mini seizures.

He suffered a major seizure at work one day and awoke in the hospital to learn he had GBM. Doctors removed what they could of a golf ball-sized tumor in the right frontal lobe of his brain. But they told his wife and mother he’d be lucky to live another 18 months.

D.J. didn’t ask for specifics but knew the prognosis was grim. He chose to concentrate on something his grandmother had once told him about the grandfather he barely remembered: The day he was diagnosed with cancer was the day he started to die.

“I decided I was going to do the opposite,” he said. “If I continued to be stoked about living life, what exactly was the downside?”

If he was rare enough to get GBM, he figured, maybe he was rare enough to beat it.

Still recovering in the hospital after his craniotomy, D.J. heard a local radio station announce a free wedding contest. For the first time, he took a selfie video. He showed the 35 staples on the side of his swollen head and explained with blunt, matter-of-fact humor what was going on. He told them all about Erin, a skater friend’s sister who he’d worked up the nerve to ask out five years earlier.

They were married nine days later at a venue in the West Bottoms, an industrial area and popular hangout for Kansas City skaters. They were supposed to limit attendance to 100 guests; after D.J. took to Instagram to announce what had happened, he says, about 300 showed.

In the following weeks, they also won a honeymoon to Hawaii, and an online campaign raised more than $40,000 to help cover D.J.’s medical bills. He also met Matt Anthony, founder and president of Head for the Cure, who calls D.J. “one of the most genuine and authentic people I’ve ever met.”

“From our first meeting, it was clear that facing a GBM diagnosis hadn’t turned him into a positive person — he was a positive person who had accepted this diagnosis as part of his reality,” Matt said. “It’s just accentuated his positivity, and I think that’s what’s so inspiring about him: He’s himself. He’s a guy you want to be around because of how he lifts you up.”

Even as “the worst sh*t ever” was occurring, D.J. says, “the best sh*t ever was happening, too.” The sense of forward progress was invigorating, and D.J. felt compelled to maintain the momentum. Though grateful for the volume of inquiries about his health, he got antsy repeatedly texting the same responses. He decided to post routine video updates on Instagram.

As he learned more about GBM and his treatment options and then charted his path forward, D.J. laid it all out for his followers. He didn’t downplay the gravity of his situation or hide his contempt for the disease. But he also struck a hopeful tone. He urged his followers not to get caught up in GBM’s prognosis (“I’m not the average”) and to take care of their own health so they could “share in this long life I’m going to live.”

“I’ve always been a talker, and I realized, ‘All right, well, I’ve got something to say about all this,’ he said. “The waves of love that followed, just when I needed it most — it was incredible.”

Among the feedback from friends were some comments from strangers. They all expressed support, but a surprising number also thanked him. His raw positivity gave them the perspective to deal with their own trials.

“So I just started making more and more, and then more people started watching them, and now it’s my entire Instagram,” he said.

“Having somebody be like, ‘Hey, man, I’m fighting something similar, thanks for smiling, f*ck cancer’ — nothing could ever be cooler than that,” D.J. says in the documentary “Rare Enough.

In addition to chemotherapy, D.J. underwent radiation therapy and stereotactic radiosurgery, followed by Novocure’s Tumor Treating Fields (TTFields) therapy for about two years. He required a second craniotomy about a year following his diagnosis, but MRIs every 90 days since then have shown no signs of tumor progression. He’s no longer using TTFields therapy.

D.J. is quick to point out that it takes more than a positive, defiant mindset to survive one of the most aggressive forms of cancer. He tells the story of how, while on a trampoline in elementary school, another kid insisted D.J. couldn’t land a back flip on his first try. We’ll see, D.J. recalls saying. He sprained his neck and wound up in the hospital.

But he does believe the right attitude is essential. Just as important, he says, is not hiding your vulnerability from friends and family, and asking for help during rough times.

Cancer has been clarifying, D.J. adds. He recognizes all the love in his life, and isn’t shy about embracing it. He focuses his considerable energy on what really matters to him and flicks off the distractions.

“Cancer sucks, but it’s given me all these incredible things,” he said. “I’m a better husband, a better friend, all of that. I wouldn’t change a thing.” (story originally posted on novocure.com)

DJ Stewart is featured in Ryan Lovell’s short award-winning documentary, “Rare Enough.”  Watch how DJ’s unwavering attitude, close friendships and support from his local skate community helped him defy the odds and keep on pushing.

DJ was also featured on the popular podcast Hawk vs. Wolf. Watch his interview with Tony Hawk and Jason Ellis as he shares his uncensored story of consecutive cancer diagnoses and his fight for survival through treatments, skating, family and support.

Follow DJ on Instagram @djaystewart

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