Due to COVID-19, Ava Girolimetti doesn’t know if she will be starting middle school this September in a classroom, on a computer screen, or a combination of both. But thanks to CAR T-cell therapy for acute lymphoblastic leukemia (ALL), she plans to be there cancer-free.
The rising sixth grader can make this claim as one of the first patients at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center to undergo CAR T-cell therapy for pediatric ALL. CAR T-cell therapy has emerged as a strong treatment option for pediatric patients like Ava, 11, whose ALL has relapsed after conventional chemotherapy. In her case, it worked wonders; six months after undergoing the procedure in August 2019, she was declared cancer-free in February 2020.
“These past four years have been incredibly challenging, requiring a tremendous amount of emotional energy and ingenuity to successfully navigate through so much uncertainty,” says Marc Girolimetti, Ava’s father. “Though we knew it was absolutely the right choice, CAR-T cell therapy is a rapid assault on cancer and required us to find an untapped reserve of strength and perseverance to champion Ava towards eliminating her cancer.”
From chemotherapy to CAR T-cell therapy
Ava was a few weeks away from her seventh birthday in May 2016 when she developed a mild temperature. When it spiked to 103 in just a few hours one Saturday morning, the family rushed to the local emergency room and then Boston Children’s Hospital. By 3 p.m. that day, lab work confirmed Ava had ALL.
She wound up celebrating her birthday in the hospital, where she stayed for a month at the start of her treatment. Ava then underwent two years of outpatient chemotherapy at Dana-Farber/Boston Children’s, which initially knocked out Ava’s cancer. It relapsed in January 2019, however, and this time chemotherapy failed to have any effect.
Ava’s care team and her family then decided on a new approach to the most challenging cases in pediatric leukemia: CAR T-cell therapy. In this innovative treatment, a patient’s T-cells are collected, frozen, and shipped to a processing lab. Then they are genetically altered to recognize and kill cancer cells and reinserted back into the patient intravenously.
In August, after chemotherapy to prepare for the procedure, Ava received her CAR T-cells.
“When Ava’s leukemia relapsed, it didn’t respond to conventional chemotherapy,” says Maya Ilowite, MD, Ava’s primary oncologist. “So we elected to pursue CAR T-cell therapy, which kills leukemia cells by a different, and more targeted, mechanism than conventional chemotherapy. Thankfully, Ava had an excellent response to CAR T-cells.”
Immediately after the CAR T-cell procedure, Ava had more chemotherapy and radiation — and then a stem cell transplant. This required another 38 days in the hospital.
“We know that stem cell transplant for ALL is most effective when we have excellent control of the leukemia prior to the transplant,” explains Ilowite. “We used CAR T-cells to get Ava into remission. Once in remission, she underwent a stem cell transplant to help ensure that her leukemia does not come back.”
Finally came five long months of isolation at home while Ava’s immune system recovered. During this period, she Facetimed into school each day and had visits from a tutor.
“Before COVID-19, I already knew how to work remotely and was wearing a mask,” says Ava. “I was really looking forward to going back to school in May, and it’s been hard staying out longer [because of COVID]. But I can still see my friends outside and take tennis lessons, as long as I’m careful.”
Now, while waiting to see what form her school year will take, Ava is channeling a good portion of her energy into something that helped her through nearly four years of treatment: ice hockey.
Ava is a huge fan of the Boston Bruins hockey team. During more than 100 cumulative nights spent in the hospital at various stages of her cancer odyssey, she found that watching Bruins games with her father, Marc, was an excellent way to forget about ALL. When she needed to wear a special face mask for her radiation treatment, her father and mother, Allison, had it painted to look like the mask worn by her favorite Bruins player, goalie Tuukka Rask.
Since word of her devotion reached the team, Ava has been showered with gifts from Bruins players past and present. Among them is the legendary John “Chief” Bucyk, who has become a grandfather figure who calls and visits her regularly. The pair are hoping Boston can win the National Hockey League’s 2020 Stanley Cup championship after finishing a game short last year.
“Ava and I share a strong bond, which has spread to the entire family,” Bucyk says. “My wife, Terri, and I are so happy to be part of Ava’s journey.”
Right around the time she was declared cancer-free in February, Ava was given the honor of fist-pumping Rask and his teammates as they emerged from their dressing room at TD Garden in Boston between periods of a win over the Arizona Coyotes.
COVID-19 has since restricted Ava’s game-watching to TV, but however many more wins the Bruins rack up during the 2020 playoffs, she will be there for them — as they were for her.
“She has boldly predicted a Stanley Cup victory, and says that even if she has to skip school, she’s going to the parade,” says her father.