Asked how he has dealt with three bouts of bone cancer and a partial right leg amputation in less than four years, 14-year-old Jack Berry says that he takes things “one step at a time.” That is, when he’s not surfing, riding his mountain bike, sprinting across tennis courts, or winning ski races.
An osteosarcoma survivor, Jack credits the rotationplasty procedure he received in 2018 as the key to his many athletic endeavors. The operation included removing the bottom half of his upper leg and knee, and then reattaching his lower leg, ankle, and foot — rotated 180 degrees — onto his upper leg. When fitted into a specially-made prosthetic, his backwards ankle and foot now provide Jack with the flexibility of a knee joint.
“It’s so comfortable, it feels like I’m wearing a shoe,” says Jack. “I feel like there’s nothing I can’t do.”
Jack lives in Montana, but the high school freshman and his parents have traveled to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for treatment ever since his July 2018 diagnosis. They have family and friends in Massachusetts, and have long known of Dana-Farber/Boston Children’s status as a leader in pediatric cancer care. Learning that its Childhood Bone and Soft Tissue Tumors Program was at the forefront of osteosarcoma surgical options, including rotationplasty, also factored in the decision.
Through his initial treatment, and two subsequent periods when the cancer returned — this time in his lungs — the Berrys have made New England their second home.
Making a choice
Living in the close-knit Montana community of Missoula, with a river and mountain in walking distance from their home, Jack and his two younger brothers are almost always outside. Bumps and bruises are par for the course, but the pain that then-10-year-old Jack felt on July 11, 2018 while preparing for an overnight backpacking trip at summer camp was something different.
“I was bending down to pick up my backpack, and my leg just broke,” Jack recalls. “We went to the doctor right away, and as soon as they saw the X-ray, it was clear what was going on.”
When the cause was confirmed as bone cancer, Jack’s father Cooper — a firefighter — was shocked.
“I’m used to saying, ‘this is not my emergency’ to stay calm and focused on the job,” says Cooper Berry. “But this was my emergency, so all that was all out the window. Nothing in my career prepared me for this.”
Cooper credits his wife, Kate, for taking immediate action. Kate is a neonatal nurse practitioner, and when the family had to decide in a matter of hours where to take Jack for treatment, her medical background helped make the choice an easy one. There were cancer centers much closer to home, but none better equipped to deal with Jack’s diagnosis than Dana-Farber/Boston Children’s.
“I knew we needed to get Jack to where the experts were, and that was Boston,” says Kate Berry. “Even though it was a huge leap for us, moving across the country with three young kids, it was the best choice because of the experience they have treating pediatric osteosarcoma patients.”
The next day the Berrys flew to Massachusetts, where Jack was put under the care of a Dana-Farber/Boston Children’s care team led by orthopedic tumor surgeon Megan Anderson, MD, and pediatric oncologist Katie Janeway, MD, MMSc. After Jack underwent several rounds of chemotherapy, the next step was choosing from three surgical options: limb-salvage surgery, a full amputation, or rotationplasty.
His parents left the final decision up to Jack, who wanted whatever operation would allow him the best chance to resume his active lifestyle. The family met in person and on Zoom with several other osteosarcoma survivors — including a member of the United States Paralympic Sled Hockey Team — who had undergone rotationplasty and returned to sports. That cinched things for Jack; he’d get a rotationplasty as well.
“Rotationplasty can be outside the comfort zone for patients, parents, and surgeons, but is great for kids like Jack who have a lot of growing left and love being active,” says Anderson. “In some ways, young people and their families who choose rotationplasty are a selective group: it is not for everyone, but can be the perfect option for some. The surgeons who perform this procedure regularly also make a selective group. As one of the few pediatric cancer centers with expertise from surgery to rehabilitation to prosthetic fitting, we made a great team with Jack and his family.”
Jack had his rotationplasty on Sept. 28, 2018. Then came seven more rounds of chemotherapy, along with physical therapy to learn to use his prosthetic leg. The team at Dana-Farber/Boston Children’s worked with A Step Ahead Prosthetics in Burlington to make sure the new leg was comfortable and durable, and Jack returned home to Montana — and sports — in April 2019.
There have been a few bumps in the road since then. Cancer was found in Jack’s lungs in 2020, which required several more months in Boston for surgeries. When it returned to his lungs in 2021, he had surgery on his lungs again to remove the tumor — and then six more months of chemotherapy. During each new hurdle, the town of Missoula rallied around the Berry family; “Jack’s Army” signs went up on lawns, Cooper’s firefighter colleagues took his shifts for months on end so he could continue being paid while in Boston, and several fundraising efforts helped cover various expenses.
Now Jack is cancer-free, with check-ups in Boston each three months. Anderson and Janeway are confident about his future, as is he.
“It is so great to see Jack thriving,” says Janeway. “I especially appreciate Jack’s parents and his care team in the musculoskeletal tumor program at Dana-Farber/Boston Children’s who have supported and cared for him during difficult surgeries, multiple tests, hospitalizations, and several rounds of chemotherapy. ”
With all his first-hand experience, Jack is contemplating a future career in medicine. But not before the young athlete tackles yet another challenge.
“My goal is to be on Team USA’s Nordic ski team in the 2026 Paralympics,” says Jack.