Boy faces cancer journey with courage and resilience
Spencer the Brave has been battling his archnemesis: the terrifying brain tumor! It looks like the villain is down for the count, when it suddenly regains strength.
“Time for revenge!” it proclaims with an evil smile, as it doubles in size. The intrepid hero rushes to his support team for help. “Try a port!” his doctors suggest.
Alarmed, the tumor shouts “No!” But it’s too late. The power of chemotherapy squashes the villain. “AHH!” it exclaims, before shrinking and vanishing completely.
“Let’s party!” proclaims our hero, who gathers his family for a celebration at Buffalo Wild Wings.
It’s a scene from a comic book, one that Spencer drew himself. But the story isn’t far from reality. In real life, the tumor hasn't disappeared yet, and Spencer is still fighting his mortal enemy—but he’s already victorious in more ways than one.
A shocking diagnosis
Spencer began complaining of headaches and nausea a month before his 12th birthday. Then, he became so exhausted that he wasn't acting like himself at all.
Doctors sent him for an MRI, which revealed a large mass in his brain.
“It was a shock,” said Spencer’s mom, Heather. “It’s not something you ever think is going to happen.”
Spencer was scheduled for an operation with neurosurgeon Howard Silberstein, MD, who hoped he would be able to remove the entire tumor. But its location in Spencer’s brain made that too dangerous, so instead, Silberstein took out a small portion of the mass and sent it to the lab for testing.
Those results gave the Gernons their first piece of good news in months. Spencer’s tumor was classified as grade 1, meaning that on a 1 to 4 scale, it was relatively curable and slow-growing. And because of the tumor’s genetic makeup, his team believed it would respond to a new treatment that he could take at home—sparing him from the side effects of traditional drugs like chemotherapy.
For a while, the treatment worked. Spencer’s first follow-up MRI showed that the tumor had shrunk by an astounding 50 percent. Three months later, the tumor had stopped shrinking, but it wasn't getting bigger, either.
“But by his third MRI, his symptoms had returned, and we were worried,” said Heather. “I just had a bad feeling about it.”
Her instinct was right. The tumor was growing, and surgery was still off the table. Spencer’s team, led by David Korones, MD, and Carol Fries, MD, recommended he start chemotherapy and prepare for radiation.
When Spencer heard the news, he was hesitant. He didn’t want to have another surgery, and an operation would be required for doctors to place the port in his chest and allow for chemotherapy treatments.
But, like always, he found a way to get through it—this time, by going home and drawing a comic.
“It’s just the perfect example of how insightful of a kid he is,” said his dad, Chris. “It was a way for him to cope with what was happening to him.”
Once the comic was complete, Spencer returned for his next appointment, and with a smile, agreed to the new treatment plan.
‘We just wanted him to wake up’
Spencer’s parents were in the midst of researching radiation options when their lives came to a screeching halt on July 4.
“We had a great day, and we were getting ready to go watch fireworks when Spencer began screaming that his head hurt,” said Heather. “Then, he said, ‘Why am I seeing these illusions?’ That’s when we decided to go to the ER.”
On the way to the car, Spencer lost control of the right side of his body, and during the ride to the hospital, he became unresponsive. The Gernons called Fries, who prepped the ER team and stayed on the phone with them until they arrived.
“His tumor was bleeding into his brain, causing stroke-like symptoms,” said Fries, a second-year pediatric hematology/oncology fellow.
Spencer went into emergency surgery the next day. Doctors weren't sure if he would make it through the operation, and his parents were prepared for the worst.
Thankfully, the surgery went well. Silberstein was able to repair the clot, as well as remove a large portion of the tumor.
But no one could be sure how the event had affected Spencer’s brain.
“We knew that when he woke up, we didn't know what we were going to find,” said Heather. “But we just wanted him to wake up.”
When Spencer regained consciousness, he couldn't talk, and because the bleeding had damaged the part of the brain responsible for language, he couldn't’ write his thoughts down on paper, either.
Without the use of the right side of his body, everyday tasks like getting out of bed or going to the bathroom also posed a challenge, and were impossible for Spencer to do independently.
“Those weeks and months were difficult,” said Chris. “But even with his disabilities and the challenges he was facing, we knew that every day was a day we might not have had with him.”
Somehow, Spencer found the courage to push through. Almost instantly, he learned how to use his left hand for everything. Determined to connect with his family, he came up with a new way to communicate—by drawing pictures on whiteboards.
“Spencer refused to let his impairments be a barrier to expressing himself,” said Korones. “He wasn't going to let anything stand in his way.”
The path forward
After Spencer’s emergency surgery, doctors determined that his tumor had transformed into a much more aggressive, fast-spreading form of cancer: a grade 4 glioblastoma.
Spencer immediately started a six-week course of radiation, followed by oral chemotherapy and a series of other treatments. Now, he receives therapy through a wearable Optune device, which delivers treatment through electrodes and disrupts the growth of cancer cells.
With all he’s been through, it would be understandable if Spencer chose to focus on the unlucky hand he’s been dealt.
But Spencer, now 12 years old, has faced every bump in the road with courage—earning himself the nickname “Spencer the Brave.”
“He is just the most amazing, inspiring kid,” said Fries. “He’s charmed his entire care team with his positive energy, resilience, and heartfelt bravery. We all have learned so much from him.”
Over the past 10 months, Spencer has worked diligently to regain some of the skills he lost. He’s now standing up with help from a walker, and he’s able to do many of the tasks that he once needed help with on his own.
Every day, his speech and language improve. He’s working his way up to complete sentences, and the whiteboards he used to rely on have been all but put away.
And he’s learned to enjoy his favorite hobbies in new, different ways. With the help of his brother, Bryce, he now plays video games with a special, one-handed controller.
The archnemesis tumor is still there, but for now, it appears to be stable, and his parents and his care team are constantly researching new, potential treatments. They hope that the therapies he’s on now will shrink the tumor, or at least keep it at bay—and that someday, Spencer will have that party at Buffalo Wild Wings.
“He has a certain magical spirit about him, and he’s never lost that,” said Korones. “If anyone can get through this, it’s him.”