Two young patients connect at Fred Hutch – proton therapy using SPARI

Six-year-old Connor and eight-year-old Brayden are two unlikely friends with some striking similarities in their lives. The two young boys live in different states, but are connected by their experience with cancer, something no child should go through. Both were diagnosed with one of the most common cancerous brain tumors in children, medulloblastoma, and both were being treated at Fred Hutchinson Cancer Center – Proton Therapy. Their mothers were members of the same Facebook support group for families with medulloblastoma, had interacted virtually, but never met in person. It wasn’t until a shared dinner at Ronald McDonald House in Seattle that the young boys met, became fast friends, and their mothers had the opportunity to compare treatment notes. 

Connor and Brayden were on similar treatment schedules but had one big difference: Brayden was using tools from the Seattle Proton Anesthesia Reduction Initiative (SPARI) to avoid using anesthesia for his treatment, and Connor was receiving anesthesia.

At their first dinner with Connor and his mom, Elizabeth, at the Ronald McDonald House, the two families shared their experiences with one another. Connor’s family and care team had started initial discussions about using SPARI techniques to reduce anesthesia use, but Connor hadn’t tried it yet.

“It was neat for Connor to meet a kid who was going through the same thing he was going through,” says Elizabeth. “It also helped him to hear about radiation from another kid’s perspective. Even though he had done his first few sessions with anesthesia, we were inspired by Brayden’s story to work with staff to move away from anesthesia for the rest of his treatment.”

Through SPARI, the care team at Fred Hutch - Proton Therapy provides tools such as a kid-friendly coloring book, as well as coaching and counseling with child life specialist, Erin Behen, MS, CCLS, and other clinical staff, including nurses, radiation therapists, attending radiation oncologists and anesthesiologists. However, the proton therapy team will work closely with families to choose whatever the best option is for individuals. The collaborative effort continues to grow and more resources for pediatric patients are in development.

Proton radiation therapy is an excellent treatment option for children, adolescents and young adults with cancerous and non-cancerous tumors that can be treated with radiation. Proton therapy can limit the radiation exposure to healthy, growing tissue in childhood cancer patients. Young children often have a hard time lying still during proton therapy or might be more frightened by the process than adult patients. Anesthesia is frequently used with small children to help them lie entirely still during this precise treatment method.

Pediatric anesthesia is considered safe. At the proton facility, all anesthesia is delivered by Seattle Children’s anesthesiologists. Even so, it is not entirely without drawbacks: treatment courses can be six weeks long, during which patients receive anesthesia five days a week; children are not allowed to eat or drink before anesthesia; and it can be stressful for the patients and their families.

“Our goal isn’t to shame the patients that need anesthesia,” Behen says. “Rather, we work with each individual patient to determine if SPARI is right for them and give them the tools to reduce anesthesia use, if possible.”

Going into his treatment at Fred Hutch - Proton Therapy, Brayden’s parents fully expected him to need anesthesia during his treatment.

“He was using anesthesia for other treatments before he started radiation, so we assumed that would be the case with proton therapy as well,” explains Amy, Brayden’s mom. “But after speaking with his care team at Fred Hutch, we decided we wanted to give it a try at his first appointment.”

It didn’t go without a hitch. Brayden was still nervous, reluctant to go through his first session without the help of anesthesia. But with some words of encouragement from his parents, Brayden successfully completed his first scan.

“He felt good. He felt like he accomplished something, and I think that boosted his confidence,” recalls Marty, Brayden’s dad. “From then on, my son would literally run to get his appointments done with no fuss.”

Fred Hutch - Proton Therapy estimates the use of anesthesia for children over the age of five has reduced by a third since the start of SPARI in early 2021.