Treatment against rare form of cancer proves a “game changer” for young Vermont girl.
WEST NEWBURY- Isabella Fraser has battled cancer since age 6. The shy and reserved 12-year-old has endured appointment after appointment, harsh chemotherapy and an unimaginable diagnosis of one of the rarest forms of cancer in the world.
It is called alveolar soft part sarcoma, or ASPS. Only about 80 people in the United States are diagnosed each year, according to the American Association for Cancer Research 2023 Report. This type of cancer grows slowly and forms in soft tissue, such as muscles and nerves. ASPS does not respond well to chemotherapy, and once it spreads to the rest of the body, it can have dire consequences.
This year, though, Isabella and her family gained extra ammunition against this sinister disease. After taking part in a clinical trial at the Dana-Farber Cancer Institute in Boston, Bella’s cancer has stopped growing. Young patients with experiences like hers offer hope to others struggling with this form of cancer and help push forward research on immunotherapy to treat not only ASPS but for other forms of cancer.
Isabella, who goes by Bella, was first diagnosed with ASPS in 2016. At the time, doctors assumed it was a singular tumor that they could remove surgically. They did, and four years passed without any problems. But in 2020, after requesting additional tests to monitor Bella’s status, the family discovered that the cancer had spread to Bella’s lungs.
Bella started chemotherapy but the treatment did not work and created “horrendous” side effects, said Bella’s mother, Emily Graton. Bella felt sick and exhausted, had hardly any appetite and dragged herself to constant doctors appointments. The family desperately wanted to find another treatment.
Then, Dr. Julie Kim, Bella’s oncologist at Dartmouth Hitchcock Medical Center suggested they apply for a promising clinical trial to evaluate a new medicine called atezolizumab, which is produced by San Francisco-based pharmaceutical company Genentech under the brand name Tecentriq.
Atezolizumab is a “checkpoint inhibitor,” a new form of treatment that re-activates and uses the body’s own immune system to fight off cancer, explained Dr. Alejandro Sweet-Cordero, chief of pediatric oncology at the University of California San Francisco and a member of the steering committee that produced the Cancer Progress Report for the American Association for Cancer Research.
“It is a type of treatment that is working well for the type of tumor that Isabella has and has spurred a great deal of additional cancer research, to try to understand why this type of treatment works for some cancers but not for others,” said Sweet-Cordero, who provided answers to interview questions via email.
For Bella, the drug proved a “game changer,” he added. Her outcome led the association to feature the Vermont girl as a survivor in its 2023 progress report. Not only has the treatment had minimal side effects for Bella, but it also has allowed her to live as a normal preteen girl again, Graton said.
After doctors advised Bella to homeschool during the peak of the COVID-19 pandemic, Bella is back at Oxbow High School after two years at home. She enjoys taking band class, playing the drums and participating in physical education again. She also loves to spend time with her friends who have eagerly awaited her return, Graton said.
Bella mostly sat silent during an interview over Zoom, letting Graton answer questions for her. She spends a huge amount of time with her mom, who works for Orange East Supervisory Union as a computer support specialist. Between her job, school for Bella and day-long visits to Boston every three weeks for continued treatment, Graton tries to squeeze in bonding time with her daughter.
“It’s just mommy-and-daughter dates that usually involve no talk about doctors or medicines or anything like that,” Graton said. “We try to go to Starbucks or get a sweet thing, a nice treat.”
Bella favors the Strawberry Crème Frappuccino at Starbucks.
Mother and daughter share a love for video gaming and play “anything that makes us laugh,” Graton said. As a passion project, Graton is developing a role-playing fantasy game called Astral Odyssey. Bella hopes one day to build her own gaming channel on YouTube, her mom said.
“I, of course, want to see my daughter living happily into adulthood, doing all the things she wants, living free in the wild,” she said with a chuckle. “The sky’s the limit. I’d love to see her at her first concert doing a drum solo.”
Although Bella’s cancer cells have not shrunk, she is in stable condition.
Graton turned to her daughter, “If you could do any little thing in the world, what would you want to do now?”
Bella looked at her mother for a moment before whispering in her ear. Graton conveyed the girl’s wishes: “Be home. Be happy. Be healthy.”
For more information about ASPS and the atezolizumab treatment, visit https://cancerprogressreport.aacr.org
Jordan Barbour reported this story on assignment from The Bradford Journal Opinion. The Community News Service is a program in which University of Vermont students work with professional editors to provide content for local news outlets at no cost.