Travis Cook, diagnosed in 2010 with a non-operable brain tumor, is putting a local face on the fight against pediatric cancer. He is pictured with his mom, Beth, and dog, Snoop, in their Pennsburg home.
Travis Cook isn’t exactly who comes to mind when someone mentions pediatric brain cancer, or for that matter, cancer research.
He just celebrated his 12th birthday, has a close group of friends, is artistic and likes listening to music and playing video games. And let’s not forget his smile – a genuine, easy grin that is often described as a “million-dollar” expression by family and friends.
Cook, who is in his third year of battling a diffuse infiltrating glioma, a type of brain tumor, doesn’t let the semantics of his situation get him down. Instead, he is gunning to become one of the leading advocates for pediatric cancer research all while working his way through countless visits to Children’s Hospital of Philadelphia (CHOP), chemotherapy and sixth grade.
Cook’s medical journey, as his mom, Beth, will tell you, began on a normal summer day in 2010. Then a seemingly healthy 8-year-old, Travis decided not to strap on his helmet before flying down a set of stairs on his bike. He hit his head on the concrete sidewalk. And his mom, believing he had a concussion, rushed him to the emergency room of a local hospital.
It was there, and through a follow-up visit to a pediatric neurologist, that a routine CAT scan turned up not a concussion, but a brain tumor. Travis Cook was not a healthy boy, but someone who needed emergency surgery to drain excess fluid from his brain.
It was a series of events Beth Cook will never forget.
“My first thoughts were ‘What, no! My kid is healthy and fine, what do you mean he has a brain tumor? Is he going to die?’ It was terrifying,” she said.
The Cooks later found out that while Travis’ tumor was initially classified as non-malignant, because of its growth rate, his oncologist said it was still cancer in the sense that cells with errors were invading healthy tissue. It would be very unpredictable.
Likening it to a bowl of salt with pepper dumped into it, a pediatric neurosurgeon at CHOP, whom Beth said is the world’s best in his field, said operating on the tumor would be impossible: It would be like someone asking you to take the pepper out without disturbing the salt. It had no solid mass or defined shape.
So doctors recommended routine scans and bloodwork as the tumor remained stable – until, that is, last year when Travis started having troubling symptoms. Suffering from blurred and double vision, headaches and extreme fatigue, the family found out the difficult news that his tumor had started to grow.
“I met with his oncologist several times to discuss treatment,” Beth Cook said. “During one of our talks, I finally forced the hardest words I’ve ever had to say out of my mouth, ‘Can this kill him?’ She answered, ‘Yes, it can.’ My heart shattered in a million pieces that will never be put back right.”
Travis began chemo a day before his 11th birthday and continues to get treatment once a week at CHOP. It has been a tough row to hoe. He has endured countless blood and platelet transfusions, needle sticks, feeding tubes, viral infections and port placements. He is nauseated and fatigued often.
“Yes, it was hard at first and it’s still hard now,” Travis said. “Between battling symptoms and going to CHOP every week, it gets hard.
“But I feel like my life has changed very drastically. I feel like I’ve become stronger and more knowledgeable. As much pain as it has brought me, it has also brought me a lot of good times and a lot of good friends. I wouldn’t give that up.”
The Pennsburg boy has a lot of close relationships in the oncology department, including staff, and is a favorite in the ward where he likes to make artwork for the younger patients and shows them his chemotherapy port when it’s accessed, helping calm their fears.
Aside from his treatments, his work as a cancer crusader helps keep him busy. While taking part in three research studies for pediatric brain tumors, Travis has been named to the Youth Advisory Council at CHOP where he helps advise doctors and administrators on issues affecting both inpatient and outpatient cancer patients. He spoke earlier this month at a Lehigh University dance-a-thon fundraiser on his experience at CHOP and lobbied for more cancer research funding.
He has also modeled in a fashion show, completed an oil painting for an auction and is getting started with the Hero Ambassador project with Alex’s Lemonade Stand Foundation – all to raise awareness of pediatric cancer and to raise monies for its research.
“Kids with cancer need more help then they’re getting,” he said. “Forty-six kids are diagnosed every day and seven kids die every day. Childhood cancer research doesn’t get the funding it needs and I’m doing my best to change that.”
He is also becoming an inspiration at Upper Perkiomen Middle School where he attends half days for his core subjects and works hard, alongside his teachers, to meet academic goals for his age.
“Travis is courageous and inspiring. He is living proof that people can overcome anything that stands in their way. He is taking a difficult situation and focusing on the positives,” said Tara Muthard, Travis’ sixth grade teacher.
Travis, himself an aspiring pediatric neuro-oncologist, said there is still much to do.
“If I had the choice to never have the tumor, I wouldn’t because now I know kids need help and I can do something,” he said. “Kids going through this are some of the strongest people I know. ”
“I couldn’t be more proud of him. He’s become a very outspoken advocate for kids battling cancer. With all he’s been through, he says he’s lucky,” his mom said. “His journey has not been easy, but he has handled it with an amazing attitude. This year has been rough. Instead of letting it get him down he got stronger and even more kind and loving. I’m honored to be part of his journey and so incredibly grateful to be his mom. He is my inspiration and my hero.”
This Thanksgiving, Travis and his mom are putting everything into perspective. He is thankful for the people who take care of him, like his doctors, nurses and oncologist, Dr. Jean Belasco, and most of all for his mom, who he says always goes the extra mile for him.
She is just thankful for the little things like having him around to nag about putting his dishes in the dishwasher or picking up after himself.
“I’m most thankful that Travis is here and doing well,” she said. “Despite the brain tumor and treatment, I can still hug him and hear him say he loves me.”