The night before 8-year-old Evie McLeish’s brain surgery, her Mayo Clinic neurosurgeon David Daniels, M.D., Ph.D., told her parents, "I don’t want you to think of this as the end. This is just the beginning of a marathon."
The procedure was the start of Evie’s long-term care plan for treatment of a brain tumor. Along with the brain surgery, that plan included chemotherapy and radiation therapy. Due to her age and the location of her tumor, though, her doctors recommended Evie receive proton beam therapy instead of conventional radiation therapy.
The timing was right. Mayo Clinic had just begun a new Proton Beam Therapy Program at its Rochester, Minnesota, campus. And not only was this unique treatment readily available to Evie, it was relatively close to her family’s home in Ankeny, Iowa, just a three-hour drive away.
"We were dealt a big blow with Evie’s tumor," says her mother, Ali McLeish. "But there have been silver linings in this whole thing, including that we could get proton beam therapy without having to travel across the country."
Evie’s tumor was a medulloblastoma, the most common kind of cancerous brain tumor in children. It was growing out of the part of her brain near the back of her skull called the cerebellum. That location was part of the reason for Evie’s need for extended treatment.
First, removing the tumor from where it was growing increased the likelihood of side effects after surgery. And following the procedure, Evie experienced problems with her right eye. She was also unable to walk or swallow properly. Although temporary, these difficulties required physical, occupational and speech therapy.
Second, to effectively treat the tumor after surgery, Evie needed 55 weeks of chemotherapy and six weeks of radiation therapy. Giving children conventional radiation therapy can be risky, because their organs are still developing. Delayed effects of conventional radiation therapy in children can include growth problems, hearing and vision loss, radiation-induced cancers and heart disease.
While conventional radiation therapy attacks tumors, it also can damage healthy surrounding tissue. The risk intensifies when radiation is directed to the brain, potentially causing negative effects on cognitive function, growth and fertility.
Because of these risks, Evie’s Mayo Clinic team believed proton beam therapy would be a better choice for her than conventional radiation therapy. Proton beam therapy can be more finely controlled and targeted to destroy tumor tissue while avoiding healthy tissue.
Evie’s first several weeks of proton beam treatments involved treating her entire head and spine, a technique called craniospinal therapy. She received anesthesia to be asleep during those treatments.
Although the treatment might sound intimidating, her mom says Evie loved going to proton beam therapy.
"The nurse who cared for her before and after sedation, Mike, did a good job of making her feel comfortable and was an amazing support for me, too," Ali says. "The child-life specialist and patient experience coordinator were lifesavers. They helped to keep my other children entertained and happy in the pediatric playroom."
Ali says Evie’s entire Mayo Clinic team made her feel safe and confident. "It’s a community of love and support. When you feel low and somebody tells you it will be okay, it’s nice," she says.
After completing proton beam therapy, Evie returned home in time to start third grade. Her Mayo Clinic physicians communicate with her hometown doctors to make sure she continues to get the therapy and chemotherapy she needs. She returns to Mayo Clinic every few months for follow-up care.
Ali says Evie just wants to be able to walk again, ride her bike, grow her hair back and do what other kids do. "I tell her she will get there; it will just take time," Ali says. "It’s a marathon, and we’re not done yet.
"All we want is for Evie to reach 100 percent of her potential and live as long a life as possible without the negative effects of radiation," Ali says. "Proton beam therapy will help make that possible."