Golden railings: Riley Kane’s rhabdomyosarcoma story
By Mayo Clinic staff
Riley Kane loves hockey, Marvel movies, Legos, reading and playing outside. He loves dinosaurs and wants to be a paleontologist. He told his mom that he could tell Mayo Clinic is the best place in the world because it has golden railings. He was referring to brass fixtures in the Charlton Building on the Rochester campus.
In 2021, Riley and his family became more familiar with Mayo Clinic than they'd ever imagined after he was diagnosed with pediatric rhabdomyosarcoma at age 8. His primary care provider noticed a lump above the youngster’s testicle, and a specialist referred the family to Children’s Hospitals and Clinics of Minnesota in Minneapolis. In the blink of an eye, Riley was in surgery to remove a tumor. A biopsy revealed that the tumor was cancerous. Not only cancerous but a rare cancer.
Tera and Jeff Kane, Riley’s parents, were in a state of shock but relieved when physicians at Children’s Minnesota referred them to Mayo Clinic Children’s Center. “They’d already scheduled an appointment for us,” says Tera Kane. “We didn’t have any experience with Mayo Clinic but regarded it as a place to go for serious things. We’d seen the PBS documentary about Mayo Clinic and couldn’t believe our child was now going there. We were glad this resource wasn’t too far away and that it has some of the best experts for this pediatric cancer.”
Like the paleontologist Riley aspires to be, Mayo Clinic pediatric cancer physicians and researchers locate, excavate, use specific tools, gather information and evaluate discoveries to better understand their subject matter. Whether it’s fossils or cancer, the basic principles are the same.
One of those pediatric cancer experts is Candace Granberg, M.D., a Mayo Clinic pediatric urologist. The family met with Dr. Granberg to discuss a care plan for Riley. Additional imaging showed that his cancer was more advanced than they’d known. It had spread to lymph nodes in his abdomen.
In March 2021, the Mayo team led by Dr. Granberg and Stephen Boorjian, M.D., a Mayo Clinic urologic oncologist, removed multiple lymph nodes in an eight-hour procedure that included placement of a port for chemotherapy and removing a small portion of Riley’s other testicle to freeze for fertility preservation.
While at Mayo Clinic, Riley commenced more than 10 months of chemotherapy under the direction of Wendy Allen-Rhoades, M.D., Ph.D., a pediatric oncologist, and in close collaboration with his physicians at Children’s Minnesota. He completed his chemotherapy course close to home. Two months later, Riley began daily proton beam therapy.
The family traveled from home in Rogers, Minnesota, to Rochester — 110 miles each way — Monday through Friday for six weeks for proton beam therapy. He finished treatment at the end of 2021. At a checkup in January, his scans were clear, showing no evidence of cancer. He’ll continue to be checked every few months for now and throughout his life for secondary effects of radiation therapy.
The Kanes say they were struck by how well Riley’s care was coordinated. “Mayo Clinic makes it easy to be a patient,” says Tera Kane. “Everyone knew what other appointments we had, who was on the team and what the plan was. They were approachable and welcomed our questions. We never felt like we were bothering people because the response was always, ‘I’m glad you reached out.’ The doctors made a point to connect with Riley on a personal level, making sure he knew he was the patient and that his best interests were their greatest concern. Mayo focuses on the whole patient, not just the disease, and makes you feel comfortable and confident in your decision to get care there. Dr. Granberg asked us how we were doing — if we were OK. She cared about us as people, as a family.”
The medical team treated Riley to a trip to the 3D Anatomic Modeling Lab led by Jonathan Morris, M.D., a radiologist, to see how the model of his anatomy had been made to guide his surgical team. Tera Kane says the family loved seeing the behind-the-scenes people and technology involved in Riley’s care and how the pieces fit together. “It was heartwarming to see so many people cared about our son and his outcomes. And Riley loves science, so it was extra special.”
Tera Kane shares an anecdote about an experience she had when leaving the parking garage after one of many trips to Rochester for Riley’s proton beam therapy. “Having two kids (including Riley’s younger brother, Owen) in the car on long trips and medical appointments can be trying, and the parking attendant must have noticed. As we approached the pay window, he said, ‘It looks like you’re having a hard day,’ and he let us through without paying. It’s a small thing, but those kinds of gestures happen all the time at Mayo and make such a difference.
“Riley was an average kid before his cancer diagnosis and treatment, but he latched on to all the positive things around him and approached his illness with optimism. He kept pushing forward and knew what he needed to do. He had an amazing opportunity to work with the best people who could heal him, and he found comfort in that. He never questioned that he’d be OK. When you read statistics about Riley’s type of cancer, it’s grim. But when you know you’re at the best place with a team that makes you feel confident and cares for all of you, it feels good.”
To learn more about Riley's story and rhabdomyosarcoma treatment at Mayo Clinic, read, "Treating pediatric patients with primary and recurrent rhabdomyosarcoma."
A version of this article was originally published in Mayo Clinic Alumni magazine, Issue 2, 2022.