It seemed like an inopportune time for Avery Berg to get sick: just a few weeks before her 11th birthday and with more than a month left of summer vacation before she would be starting sixth grade. But when her headaches and nausea turned to double vision, what seemed like a minor inconvenience turned into a serious concern. After an August 2016 emergency room visit, an MRI and a flurry of exploratory procedures, her family would learn that her symptoms pointed to something far more sinister than the common flu.
Avery’s symptoms were caused by a malignant tumor in her brain, and biopsy results showed it was an extremely rare cancer called atypical teratoid rhabdoid tumor, or AT/RT, and most often seen in children age 3 or younger.
Surgery was mandatory, but the tumor would first have to be reduced in size through a combination of radiation and chemotherapy. Avery’s parents, Kristie and Joe, explored a number of treatment options, eventually deciding on a protocol that included proton beam radiation therapy at Seattle Cancer Care Alliance.
Conventional radiation vs. proton beam therapy
Around half of cancer patients receive some kind of radiation therapy, in which a machine delivers high-energy radiation to shrink tumors and kill cancer cells. While standard X-ray radiation therapy is generally viewed as an effective cancer treatment, normal, non-cancerous cells can also be damaged in the process. Early on in treatment, radiation patients experience side effects such as fatigue, hair loss and skin irritation. Months or years after radiation treatment is finished patients can still suffer from internal scarring, memory loss or damage to nearby organs.
Proton beam radiation therapy is different. A newer, more targeted approach to killing cancer, proton therapy is a next-generation radiation treatment that deposits the greatest amount of radiation right into the tumor and then stops, allowing patients to receive high doses with less risk of damage to nearby healthy tissue. Research shows proton therapy can minimize short- and long-term side effects, and help maintain patients’ quality of life.
“We expect proton radiation to be as effective as standard X-ray radiation, but with fewer side effects,” says Dr. Ralph Ermoian, a pediatric radiation oncologist at SCCA Proton Therapy Center and Avery’s radiation oncologist, “particularly long-term side effects.”
SCCA’s Proton Therapy Center in Seattle is one of about 20 proton centers in the United States, and the only proton center in the Northwest.
Avery’s treatment protocol
Avery’s treatment plan called for four weeks of standard proton radiation treatment to her head, spine and pockets of fluid that had built up around the tumor, followed by two weeks of proton beam therapy targeted at the tumor itself.
“We choose proton radiation therapy for treating children with brain tumors because it works equally well against tumors, but with less radiation to healthy brain, pituitary gland, thyroid gland and other tissues,” says Dr. Ermoian. “This is expected to make a difference in the long term, which is what all of us plan for when we treat patients with curable brain tumors, whether they are children or adults.”
Avery’s protocol also included six months of chemotherapy, with surgery to remove the growth occurring two months into the chemotherapy regimen.
While Avery’s surgeries and chemotherapy were done at Seattle Children’s Hospital, she received radiation — including the proton therapy — at SCCA Proton Therapy Center. She and her mom made the trip five days a week for the 45-minute sessions, during which Avery would don a specially fitted mask and lie still on a platform while radiation was directed at the tumor.
During her treatment, Avery worked hard to stay on track in school. While she was able to continue to attend classes during her radiation treatment, she missed a considerable amount of school during chemotherapy. Still, she kept up with homework and has since advanced to seventh grade with the rest of her peers.
Avery and her family were buoyed by the support of friends, family and their community throughout Avery’s treatment process. Several of Avery’s friends shaved their heads in solidarity when the radiation treatment caused her hair to start falling out. Classmates folded paper cranes and joined the Run of Hope charity race for pediatric brain tumor research. Friends brought meals and church members sent prayers.
“You have done more than I can ever articulate or thank you for,” Kristie wrote in an open letter on her blog to everyone who supported the family throughout Avery’s treatment. “Without you, I wouldn’t still be standing.”
The success of treatment
Midway through radiation treatment, Avery’s family was encouraged to learn that the tumor had shrunk significantly. Avery continued with the remaining radiation sessions and was scanned again. While this MRI showed little change in the tumor’s size beyond the initial reduction, doctors were nevertheless encouraged.
“They said it looked different,” said Kristie. “It was similar in size, but it looked deadened.”
Only after radiation and chemo were finished and doctors were able to surgically remove the tumor did Avery and her parents receive the news they had been waiting for: not only was the surgeon able to remove the entire tumor, but he told Avery’s parents that the tumor was nearly completely killed by the treatment.
Today, a little more than a year after she was diagnosed, Avery is back at Explorer Middle School in West Seattle, enjoying classes (especially science and drama), and partaking in her new favorite foods discovered during a post-treatment trip to Italy: gnocchi and truffles.
She’s through with active treatment, and now enters into an “after treatment” protocol, which involves MRIs every three months for the next two years, followed by scans every six months for five years and then yearly after that. Doctors will watch the small cyst that remains where the tumor once grew, but Avery is considered to be NED, or “no evidence of disease.”
“She’s doing better than anyone expected,” said Kristie. “We’re taking it one day at a time at this point, and not waking up and thinking about cancer nonstop.”
Avery and her family participated in their second Run of Hope event in September, with Team Awesome Avery raising $70,000 for Seattle Children’s Hospital. In December, the family heads to New York City to see the musical Hamilton on Broadway, thanks to the Make-A-Wish® Alaska and Washington..
Although Avery is busy immersing herself in life as a seventh grader, she’s grateful for the treatment she received at Seattle Children’s and SCCA Proton Therapy Center — and especially for proton beam radiation therapy.
“It makes me feel grateful that this is available for people in the same situation as me,” said Avery. “It really did save me.”
Avery Berg’s mother, Kristie Berg, documented Avery’s diagnosis and treatment of AT/RT – including proton beam radiation, chemotherapy and surgery — on her blog, Step by Step with Awesome Avery. You can read about the family’s journey here: http://nevergivingupheart.blogspot.com/