12-and-a-half-year-old Trevor Pribyl (at his age, the “half” is important) is everything you’d expect a kid his age to be. He wrestles, runs cross-country and plays baseball. He likes hanging out with his siblings, Zachary, Porter and Jacqueline.
But dig a little deeper and you might be surprised to learn that Trevor is also the founder of a nonprofit, called “Trevor’s Fill the Suburban.” Every year on his birthday, Trevor loads the aforementioned Suburban with a collection of toys and rides with his family to University of Minnesota Masonic Children’s Hospital, where he donates the toys. In 2017 alone, he delivered more than 900 gifts to patients at the hospital.
So what inspired a 12-year-old to do kick-start a charity? The short answer: Trevor’s own medical experience.
Trevor has neurofibromatosis, a relatively rare genetic condition that causes mostly benign (non-cancerous) tumors to form in a person’s brain, along the spinal cord and other nerves. He has already received 14 surgeries over the course of his young life, including three separate surgeries on his birthday, which is the same day that Trevor came up with the idea for his charity project.
Trevor’s healthcare journey began when he was four. “I noticed his eye start to cross, so we took him to an eye doctor,” said his mother, Rachel Pribyl. Trevor and his family tried different therapies, including eye patches and glasses, but none of them helped.
In mid-2010, Trevor was referred to former University of Minnesota Health Ophthalmologist Erick Bothun, MD, for eye surgery. Bothun ordered a routine MRI.“Dr. Bothun went in for the MRI and came out with his jacket and briefcase,” said Rachel, who remembers the confusion that she and her husband Mark felt that day. “He told us he couldn’t do the surgery because Trevor had a brain tumor.”
In spite of the expert treatment, the tumor returned. This is typical for patients with neurofibromatosis, who frequently experience recurring or new tumor development.
“Trevor went through 18 months of chemotherapy to shrink that tumor and it has stayed stable ever since,” Rachel said. “But it left him with hearing issues. The sight in his right eye is slowly getting worse, and he has paralysis on the right side of his face.”
Soon after, another small tumor began growing in the left side of Trevor’s corpus callosum, the broad band of nerve fibers that joins the two hemispheres of the brain. He needed another surgery to remove it. Pediatric Neurosurgeon Daniel Guillaume, MD, MS, took over Trevor’s care. Guillaume performed a minimally invasive endoscopic procedure on that tumor.
“He was super-awesome about explaining the procedure and reassured us that it would be the right move, which resulted in less trauma for Trevor,” said Rachel.
That tumor returned as well, prompting another surgery. Each procedure took a toll on Trevor. At one point, Trevor came home after in a wheelchair and was required to use a walker because of balance issues, Rachel noted.
“We were becoming very skeptical about additional surgery,” she said.
Guillaume spoke with Trevor and his family about an innovative and minimally invasive technique called laser ablation. “The laser ablation tool has a long catheter,” Guillaume explained. “At the tip of the catheter is a lead that delivers thermal energy. When placed inside the brain, this device precisely destroys tumor tissue without injuring normal tissue.”
Guillaume and his surgical team used a robotic assistant known as ROSA to accurately position the laser tip inside Trevor’s brain. The team performed the procedure in an MRI machine, using MRI images to assess their progress and monitor the temperature of the brain tissue surrounding the tumor for safety.
“We could literally watch the tumor be destroyed in real time,” said Guillaume. The team didn’t need to remove the dead tumor tissue--the body’s inflammatory response would eventually clear it out, Guillaume said.
“Trevor got through the surgery with flying colors,” Rachel said. “He woke up and wanted to eat and wanted to go home. We weren’t used to that at all.
Trevor’s team was concerned that his second tumor might be cancerous, Rachel said. The standard of care is radiation, but Guillaume and Moertel chose not to pursue that treatment course.
“When the tissue analysis came back, it ended up being benign. Because they treated him as an individual, he didn’t have to go through radiation,” Rachel said.
One of the biggest lessons that Rachel and Mark learned from having a sick child has to do with Trevor’s siblings. “You’re trying to be everywhere at once but you must be with the sick child and sometimes the siblings can be pushed aside,” said Rachel. “Don’t forget about your other children. They’re strong and supportive, but they take the brunt of it all.
“It’s a rough road but our faith has been a huge comfort for us,” Rachel said. “You also learn to trust your doctors and not be afraid to ask questions. The support through University of Minnesota Health is amazing—no matter what we needed, they were there for us.”