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READ MOREPublished on September 26, 2022 in Survivor, Event Participant, Pediatric Brain Tumor, Stories
“Thomas the Tank Engine” — the TV show about a blue train with red piping — captured the heart of a young boy named Cole at an early age. When the life-sized Thomas the Tank Engine pulled up on the track at the Durango & Silverton Narrow Gauge Railroad in Colorado, 2-year-old Cole stood in amazement at the sight in front of him.
“We probably have watched all the episodes at least a thousand times,” Cole’s mom, Shauna, explained. “To see his face light up when Thomas came around the corner on the tracks was priceless. He couldn’t believe it was real, and we rode on Thomas. That was probably one of my favorite memories of Cole when he was little.”
It was a happy memory that Shauna would fondly recall during difficult moments throughout her son’s brain tumor experience.
Cole’s interests shifted from “Thomas the Tank Engine” to “Cars” the movie as he graduated from preschool, but his zest for life and tendency to always be at the center of attention remained steadfast.
As an 8-year-old boy, Cole loved to make people laugh. “I’m pretty sure he thought that his full-time job at school was to be the class clown,” Shauna joked.
Cole, now a third grader, started exhibiting behavior in class that disrupted his classmates’ learning, and he struggled to sit still and focus throughout the day. For a time, his new ADHD medication helped settle him in class.
When this ordinarily energetic boy, who was always so full of life, consistently complained of headaches and feeling unwell, his pediatrician weaned him off the medication. Even after stopping the medication, Cole grew sicker and sicker. More often than not, he had a headache to the point where his parents, Jarrad and Shauna, kept a log of the frequency and intensity of his headaches. Cole also began vomiting multiple times a day.
The family went hiking with friends in Telluride for Memorial Day weekend when he kept veering to the right. They eventually put him on their backs and carried him back down. “I remember thinking, ‘Oh my gosh, something is really wrong,’” Shauna said.
His parents advocated for further testing due to the headaches, vomiting, balance issues, an episode of gibberish talking, and blurred vision. His pediatrician suggested Cole see a neurologist. The neurologist’s office required a visit to a children’s concussion clinic to rule out a concussion since Cole had blacked out for a second after getting hit back in November during a flag football game.
The clinic suspected cluster migraines but wanted to do one more quick test. The medical professional asked Cole to walk straight up and down the hallway, and then she had him perform a heel-to-toe walking test. Her observations led her to send Cole downstairs right then for an MRI.
“I thought somebody’s finally listening, and I’m going to get some answers,” Shauna said. “Never in a million years thinking the answer would be a brain tumor.”
Jarrad and Shauna learned it was a brain tumor in June 2016, shortly after Cole turned nine.
Shauna shares, “Our amazing oncologist said, ‘I’ve got really bad news. We found a mass.’ Even though I was trying so hard to smile and be brave, Cole could see on my face that something was wrong. And he said, ‘I’m really sick, huh, Mom?’ And I said, ‘Yeah, buddy, but we’re going to be okay.’ So they took us to the ER and ran a million tests.”
Looking back, the symptoms of his tumor seem straightforward, but they weren’t in the moment. For example, we could explain away symptoms due to medication side effects or anxiety.
“I am hopeful that if someone reads this story because their kids are experiencing these things, they’re not dismissed by doctors,” Shauna said. “There are so many reasons why the things happening to Cole could be happening. They get headaches because they’re dehydrated, watching too much TV, or playing video games. I wish I would have pushed harder to find the answers and to insist something was wrong. You’re not usually too far off base when it comes to your kids.”
Now 15 and six years cancer-free, Cole enjoys spending time with friends, playing video games, watching movies, and playing football.
During one of his routine checkups, his medical team found a cyst in the space where his tumor once was. It hasn’t grown in the last few years, but they carefully look for signs that the cyst has increased in size.
“As he grows, I wish for him that this could be something of the past, but that is not our reality,” Shauna said. “That’s why the National Brain Tumor Society is so important to our family. To find this brain tumor walk was such a blessing.”
The annual Colorado Brain Tumor Walk & Run brings the brain tumor community together to honor, learn, develop meaningful relationships, and make tangible progress in the fight to conquer and cure brain tumors.
“I remember the first walk we did right at the one-year mark,” Shauna said. “I remember him looking around at all these people who have experienced something similar. He felt like he belonged to something greater than himself. These people knew what it was like to go through what he’d been through — similar scars and similar surgeries. It meant the world for him to be able to experience that. So that’s why we walk. We walk for him. We walk for others who can’t, and we walk for those still fighting. It means everything to us.”
Hundreds of participants gathered at Sloan Lake last Saturday to take action to propel research and treatments forward. Cole took the stage as the keynote speaker in his fifth year attending the event.
“We have watched the speakers get up there and tell their stories in the past,” Shauna shared. “For Cole to be able to stand up and tell his story — really for the first time — to a crowd of people who can understand what he’s gone through is remarkable. He often wonders why he had his tumor. I think now his purpose is to share his story, so other kids can know they’re not alone. Parents can see symptoms and hopefully get answers sooner, so their kids don’t have to suffer as long as mine did. I’m grateful that somebody gave him the opportunity to share his story.”
“When someone asks me why they should donate to NBTS, my answer is usually very simple,” Shauna said. “It’s an organization that stands for everything our family has gone through and survived. We hope that through this fundraising, NBTS will give back to research, find cures, and find ways for treatments that are not chemo or radiation.”
This Childhood Cancer Awareness Month, support Cole’s family’s efforts and help ensure the urgent, unmet needs of the pediatric brain tumor community continue to be heard and addressed. When you make a gift to NBTS, you have an immediate impact on the important work underway to find a cure and ensure a better quality of life for children living with brain tumors.