Life After a Brain Tumor: Myers’ Journey Beyond Surviving Cancer
June 12, 2019
For many patients, surviving cancer is just the beginning of the journey. Myers knows this well. A year of intensive chemotherapy and radiation destroyed the aggressive brain tumor, but Myers still faces lingering side effects from treatment.
Myers is an 11-year-old boy with a gap-toothed smile and freckles, but he has the presence of an older soul, with a survivor’s spirit twinkling in his eyes.
“Everyone who meets him says there’s just something about this kid that’s so special,” says his mom, Heather, looking at him with pride.
“Special” doesn’t begin to describe what Myers has overcome in his short life.
When Myers was 2 ½ years old, he started vomiting and acting unusually tired. His family took him to several doctors near their home in Lafayette, Colo. No one could pinpoint the cause, but at the time, his symptoms didn’t seem too concerning. Then Myers’ eyes became crossed, an alarming sign that called for a CT scan.
Nothing could prepare the family for the results. There, in the middle of their son’s brain, was a tumor the size of a golf ball.
Heather had already lost one family member to cancer. Her younger sister, Paige, died of leukemia at age 11.
“I remember thinking, ‘How could this be happening again?’” she says.
An Unthinkable Diagnosis
Myers was immediately referred to the Center for Cancer and Blood Disorders at Children’s Hospital Colorado where he underwent a six-hour operation with neurosurgeon Dr. Todd Hankinson. Dr. Hankinson biopsied the tumor and performed a groundbreaking procedure to redirect fluid, relieving pressure in the brain.
The surgery provided short-term relief, but the biopsy results were like a gut punch: Myers had a rare and aggressive brain tumor known as Atypical Teratoid Rhabdoid Tumor, or ATRT. It typically occurs in kids under 3 and has very poor survival rates. For kids like Myers, the average survival is just one to two years.
It was a dismal prognosis, but Myers’ family was determined to fight. The family was introduced to Dr. Meg Macy, director of Clinical Research and leader of the Experimental Therapeutics and MIBG Programs. She specializes in cutting-edge therapies for hard-to-treat tumors like ATRT. Because ATRT is so rare and few survive, there isn’t a lot of data on the best course of therapy.
In collaboration with fellow pediatric experts at the Dana Farber Cancer Institute in Boston and across the country, Dr. Macy developed a treatment plan for Myers. It involved a strict regime of chemotherapy and radiation. She vowed to be there for every single one of Myers’ appointments to help the entire family get through it.
Myers would travel an hour to get to his chemotherapy appointments that started at Children’s Colorado at 6:30 a.m. and last all morning. He would then undergo radiation treatment all afternoon. The family would return home, exhausted, only to start the process all over again the next morning.
Myers did this every day, one week on and one week off, for an entire year. It was grueling, but Myers says that Dr. Macy made every appointment easier.
“The doctors always made me feel comfortable at the hospital,” he says. “They try to make it a fun experience, even though they knew I didn’t want to be there. I loved racing Meg down the hallways.”
By the time Myers turned 4, his tumor had been destroyed and his cancer was in remission – an incredible milestone that very few children with his type of brain tumor ever reach.
Improving Quality of Life
Children’s Colorado is committed to not only helping kids like Myers survive, but also to have a good quality of life after their treatments.
“Many people think that a family’s journey is done when they finish chemotherapy, but oftentimes the journey continues,” Dr. Macy says. “Chemotherapy and radiation are very intense and can have long-term side effects, especially for kids who go through treatment at a young age.”
In her 11 years in oncology, Dr. Macy has seen significant advancements in treatment of pediatric cancer. Individual donors and organizations, such as The Morgan Adams Foundation, have supported pediatric cancer research breakthroughs at Children’s Colorado that are improving survival rates. Today, with the help of donors, Dr. Macy is determined to improve cancer rates while lessening the long-term side effects for her patients.
For Myers, cancer treatment impacted his balance, learning and memory. Eight years later, he is still working hard to regain his strength. With the help of Dr. Macy, his family and teachers, Myers is proud to be learning at grade level and to have completed his first ski season this past winter.
Nearly a decade after first meeting Myers, Dr. Macy is as committed as ever to helping him reach his goals. She still has never missed one of Myers’ appointments and promises she never will.
“We’ve forged a lifelong friendship,” Heather says.
A journey that began as hopeless and bleak has changed into something beautiful.
Today, Heather says, they have more hope than ever.