Balloons of various colors are taped in a row across the wall. Twenty yards away, 8-year-old Dylan Berio announces “yellow,” pulls back the string of his bow, then releases — smiling as he hears the pop. His arrow successfully pierced the yellow balloon.
Archery requires focus and precision — something Dylan has in ample quantities. That would be impressive in its own right, but it’s even more remarkable given that he’s been on and off chemotherapy since age 3 ½ to treat pilocytic astrocytomas (brain tumors). As a result of the tumors, he lost most of the vision in one eye, and he needs glasses for both eyes. Nevertheless, when Dylan stands with instructor Chris Reedy at the archery range, he is engaged and on target.
Dylan was diagnosed with brain tumors in 2011. He had two surgeries and receives chemotherapy. To monitor potential changes, Dylan has an MRI every three months. Currently, Dylan’s tumors are stable, but an MRI last January had revealed progression in the tumors.
When Dylan’s mom, Dawn, shared that news on Dylan’s Facebook page, Chris Reedy, owner of Reedy’s Archery in Middleborough, Massachusetts, immediately reached out. He suggested Dylan stop by his archery range and learn to shoot arrows. He thought it might prove therapeutic.
Dylan took to archery right away. After a few sessions of borrowing equipment, Dylan received a gift from Reedy — a bow and arrows of his own. Dylan chose a black bow with a green string and arrows with orange and white flights (feathers).
On a day in late July, Reedy sits beside Dylan to coach him along. But when Dylan shoots the arrow, it’s his own muscle and focus that direct the arrow into the balloons. “He has his good days and his bad days,” says Reedy. “But I can tell when he’s focused.”
Sometimes, Dylan sees people stare at his bald (or near-bald) head or the scars on the back of his head, and he doesn’t like it. That’s because Dylan wants people to see him as he sees himself: He is active and playful. He can shoot an arrow with the precision needed to pop a balloon 20 yards away. He also loves Legos toys, Matchbox cars — and to ride a kid-sized, 4×4 off-road vehicle with a friend outside the archery shop.
September is Childhood Cancer Awareness Month — and this month, Dylan and other children at Dana-Farber/Boston Children’s are sharing this message: We are more than you see. Don’t focus on the side effects of our treatment — see who we really are. Learn more, see more stories, and join the campaign at DanaFarberBostonChildrens.org/MoreThanYouSee.
“When I woke up after my stroke, all I wanted was to be normal again,” recalls Kelsey Tainsh. Normal — as in a healthy teen athlete who could brush her teeth and shower on her own, who wasn’t wheelchair-bound, who wasn’t compelled to hide her paralyzed right hand in her pocket everywhere she went, one who hadn’t lost all of her high school friends except for her two triplet sisters.
Now, this world-champion athlete not only learned to walk and talk again but also to embrace her differences. “Our hardest obstacles can be our biggest opportunities,” she says.
Kelsey’s first taste of being different came at age 5. She was diagnosed with a brain tumor — an optic pathway pilocytic astrocytoma. Her parents brought her from their home in Winter Park, Florida, to Boston Children’s Hospital for treatment — surgery and radiation.
“It wasn’t a big deal. I wore a baseball cap to cover my scar and got back on with my life pretty quickly,” she says.
Allison seems an unlikely candidate to teach medicine to Mark Kieran. She’s an 8-year-old New Hampshire second grader who loves basketball, hip hop, acrobatic dancing and jewelry. He’s a pediatric neuro-oncologist with a PhD in molecular biology, not to mention decades of clinical and research experience. But teach Kieran, Allison does.
In December 2012, Allison was diagnosed with metastatic anaplastic astrocytoma brain tumors — two on her brain stem, two on her spine, and three at the top of her head. She had surgery and chemotherapy — and for two months her tumors responded to therapy. Then treatment stopped working.
Genomic testing revealed Allison’s tumors had a genetic mutation — a so-called BRAF mutation — seen in some cases of the skin cancer melanoma, which mainly affects adults.
Kieran, clinical director of the Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, suggested enrolling Allison on a clinical trial of dabrafenib, a drug targeting the BRAF mutation in melanoma patients.
She would be the first pediatric brain tumor patient in the world to join the trial.
A year ago, Aimee Fellows couldn’t imagine being back in this room, awaiting the start of another violin concert featuring her daughter. Sophie, now 10, is dressed in a frilly white blouse and black skirt. Her dressy black shoes — her first pair of heels — are just a tad higher than flats.
Last year, Sophie arrived at the Boston Children’s Hospital’s Patient Entertainment Center wearing pajamas, with a white bandage covering her IV hook-up. Her fellow students from Carolyn Bever’s violin school in Vermont had come to help her finish the holiday concert she had left a few days earlier because of a painful headache that turned out to be a sign of a brain tumor.
The day before her surgery, Sophie completed the concert, ending with Pachelbel’s Canon, the finale for which she had practiced for months.
“It was bittersweet,” Aimee Fellows recalls. “I was fearful that I was watching my 9-year-old daughter perform this talent perhaps for the last time.”
It took two operations to completely remove the tumor, which, while large, was non-malignant.
Bever’s students returned in 2015 to perform a concert to bring holiday hope to this year’s patients. “Last year I was pretty scared for the next day,” Sophie says. “This year is kind of like a celebration.”
A surgeon and a pianist
In 2014, Dr. Liliana Goumnerova, Sophie’s surgeon and director of neurosurgery for Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, sat in the audience. This year, Goumnerova, who started playing piano at about the same age Sophie started playing violin, accompanied the violinists for Pachelbel’s Canon. “I don’t think you can really repeat this experience,” Goumnerova says. “This is a once-in-a-lifetime deal.”
Sophie’s father, introducing the piece, remembered the 7½-hour surgery the day after last year’s concert. While Sophie was in the recovery room, he and the family went to grab some food — and heard Pachelbel’s Canon playing in the background.
Three days later, after a second surgery to remove the last bit of Sophie’s tumor, the Fellows went back to the cafeteria, and once again Pachelbel’s Canon was playing.
As they watched their daughter play violin beside her neurosurgeon on the keyboard, Chad and Aimee held hands. “I was thinking about Dr. Goumnerova’s delicate hands, watching her fingers playing the piano,” Aimee Fellows says. “Those are the fingers that were working on Sophie’s brain.”
Learn more about the Dana-Farber/Boston Children’s Brain Tumor Center.