By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
The bump on her head was just annoying at first.
Brylee Boettjer figured it was the result of a collision on the basketball court. It was 2020, she was 15, and she loved the game.
But a visit to her doctor for a physical raised suspicions and led to a consultation with a dermatologist, then an ultrasound, and next an MRI, which showed multiple tumors in her brain, spine and eye.
The diagnosis was neurofibromatosis type 2 (NF2), a rare, genetic condition that causes tumors to grow on nerves, particularly those in the skull and spine.
If there is good news in that diagnosis, it is that the tumors are noncancerous, but they can do damage in the body, leading to deafness and other disabilities.
Brylee’s dad, Shaun Boettjer, remembers trying to sort out the news, unsure how to explain it to his daughter. But she handled it like a champ, he said.
“She’s been pretty strong the whole time,” he said last month in the Riley Children’s Health outpatient center, as he waited for Brylee to get hooked up for the regular infusion she gets to shrink and/or control the tumors.
“It hit hard when they told us about the tumors,” he said. “But once we got down here to Riley, we felt better after meeting her team.”
Two years ago, Riley formed an NF multidisciplinary clinic that pulls together multiple subspecialties in one space so patients can see several providers in a single visit, VonBergen said.
“The clinic is built around viewing the patient in a holistic manner,” she said.
That includes addressing not just medical issues, but psychosocial needs of patients and families. That’s why the team also includes psychologists, social workers, neurologists and neuro-oncologists.
For the past several months, Brylee and her dad have been making the 90-minute drive to Riley from their home in Peru, Indiana, every few weeks for infusion treatment with an angiogenesis inhibitor called Avastin, which has shown good results in Brylee.
There is no cure for NF2, but it can be managed with proper treatment.
“Like many patients, Brylee was on a couple of clinical trials, but her tumors grew through those therapies,” VonBergen said. “With the current therapy, which is an infusion, we’re happy to say that her tumors have shown good response and have actually gotten smaller. At this point we’ve gotten to the point where we feel like we have stabilized her disease.”
Brylee underwent brain surgery in 2021 to remove one of the larger tumors that was affecting her balance and hearing. She had to relearn how to walk at the age of 16, and she is deaf in her left ear.
But she not only learned to walk again, she returned to play basketball and participate in track and field for her high school team a few months later.
Now 18, Brylee learned she couldn’t compete on the court her senior year when she started the new infusion treatment, but she stayed involved, handling the team’s social media and mentoring younger players.
She was elected prom queen in the spring and graduated from high school in June. In the fall, she will commute to Indiana University Kokomo to pursue a degree in elementary education.
“She is proving that there really isn’t anything she can’t do,” VonBergen said.
The teen keeps her attitude in check, despite the ups and downs of the past nearly three years.
“As much as it’s been a rough journey,” she said, “it could have been way worse. I have a huge support system. The whole town of Peru is on my side.”
Her humor and positive outlook endear her to the Riley outpatient hematology/oncology team, including nurse Ben Hawkins, who calls Brylee “the coolest kid.”
“She makes us all happier and gives us a hard time, which we appreciate,” he said.
While Brylee will continue to live with NF2, her team is hopeful that continued treatment will eventually get her tumors to a dormant state. And they are looking ahead to the time when Brylee and others like her transition to the adult healthcare world.
“We recognize that our children will age out of Riley at some point but will still have NF,” VonBergen said. “We have partnered with our adult colleagues within IU Health so we can smoothly transition them. We are so excited to have this clinic and for the research that’s being done.”
As Brylee began another infusion, she shared another dose of positivity, mostly for young people out there who are facing hard times.
“I’m doing this story to help other kids. I want them to be able to see that even if it might not be OK now, it will be OK.”
Things might be tough for a while, she said, “But you have to climb mountains to get the view.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, email@example.com