For much of his 17 years, Spencer Riley has lived to play basketball. This winter, his favorite sport helped the teenager get back to life.
Riley was diagnosed with non-Hodgkin lymphoma in 2016 and treated at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center that summer. He underwent an intensive three-month treatment cycle: one week of inpatient chemotherapy at Boston Children’s Hospital, two weeks of recuperation at home, and then back to Boston Children’s.
While occasionally well enough to go on family outings, he was still too weak to shoot or even dribble a basketball. …
The ball leaps off the metal bat with an unmistakable “ping” that denotes good contact. Miles Goldberg runs to first base, from which the 13-year-old will soon contemplate – and safely execute – a steal of second.
Miles is used to transitioning naturally with the seasons from football to hockey to baseball. This year, however, has been different. Every hit, catch, and glide across the ice has had far more meaning to the eighth-grader, who recently completed osteosarcoma treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
His treatment included a wide resection of his right proximal tibia in June 2015 that resulted in the loss of most of his right leg bones and part of his thigh bone. Miles is able to move more freely on a prosthetic thanks to an innovative surgery called rotationplasty, which is an option for some Dana-Farber/Boston Children’s patients with osteosarcoma whose cancers require very wide surgical resections.
In the procedure, Miles’ lower right leg and foot were rotated and attached to his thigh bone, so his ankle now functions as a new knee joint. The prosthetic leg is modified to slip over his reattached foot, and makes up for the difference in height with his left leg.
“There were several amputation options, but after I watched some videos about how much mobility you have with rotationplasty, and met some people who had it done, I knew it was for me,” says Miles. “I even met a kid who played varsity high school football and baseball after the same surgery.” …
Jessica Madsen wasn’t sure if her daughter, Addy, was ready for karate, until the 4-year-old got the chance to take free lessons in the most surprising place:
Her hospital room.
Addy and other stem cell transplant recipients at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center are offered free martial arts coaching during their inpatient recovery through an innovative program called Kids Kicking Cancer. Married black belt instructors Joe and Cathy Esposito visit the pediatric transplant unit at Boston Children’s Hospital every other Saturday, letting patients observe and try various kicks, punches and blocks. In addition to safe workouts tailored to their age and health restrictions — body-to-body contact is prohibited and moves can be performed from bed — the students learn breathing techniques to better manage the fear and pain of treatment.
More than 30 patients and their visiting siblings have taken lessons since the program was first piloted at Dana-Farber/Boston Children’s last September. Instruction is currently limited to transplant recipients, who caregivers feel can especially benefit from the sessions.
“Due to their weakened immune systems, transplant patients need to be isolated from other kids and can’t go to the many group programs we run,” says Mary Malley, a child life specialist in Hematology/Oncology who is overseeing the program with her Dana-Farber/Boston Children’s colleague, Community Resource Coordinator Abby Brown. “This offers them fun, healthy, social interaction and a chance to become more empowered against their disease.”
Kids Kicking Cancer was founded in 1999 just outside Detroit, Michigan, by Elimelech Goldberg, an orthodox rabbi and first-degree black belt in Choi Kwang Do. After he and his wife, Ruthie, lost their 2-year-old daughter, Sara, to leukemia, “Rabbi G” discovered that the same techniques used to withstand pain in martial arts could help children with cancer. The program is now offered to more than 2,600 pediatric patients annually throughout the U.S. as well as in Canada, Israel and Italy.
Caregivers can already see the benefit at Dana-Farber/Boston Children’s. Each Thursday before the Espositos visit, child life specialists gauge interest. There are plenty of repeat participants. …
Amy Kindstedt hates cancer, but the 9-year-old is very thankful for one thing: Because genetic testing on her baby brother Hunter revealed he had the same genetic mutation she did, his cancer was caught much earlier than hers — possibly sparing him the same level of intense treatment she endured.
The mapping of the human genome has ushered in the age of precision cancer medicine, in which an individual’s treatment can be tailored to the specific genetic abnormalities of her disease. In recent years, much attention has been brought to genetic testing for cancer risk, particularly around Angelina Jolie and her decision to undergo preventative surgeries.
Sometimes, a gene that contributes to disease contains a mutation, similar to misspelling a word, which can lead to a higher risk of cancer. In Jolie’s case, this was a mutation in the BRCA1 gene. Knowing which mutated genes are at fault for a particular cancer can also help physician-scientists determine, through genetic testing, which members of a patient’s family may have the same mutations and be at higher risk.
Less than a month after Amy’s lung surgery, Hunter had a tumor removed from his lung, too. ~ Susan Kindstedt
But genetic mutations don’t just affect adults. The Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, where the Kindstedts were treated, offers multidisciplinary care to families in this situation. During twice-monthly clinics, patients at increased risk for hereditary cancers and their relatives meet with pediatric oncologists, genetic counselors, psychologists and other specialists from Dana-Farber Cancer Institute and Boston Children’s Hospital for cancer risk assessments, recommendations for managing cancer risk and psychosocial support.
“Parents often ask what caused their child’s cancer, whether it could be genetic, and whether other children in the family might also be at risk,” says Dr. Junne Kamihara, co-director of the Pediatric Cancer Genetic Risk Program. “We provide a team that can address these issues, with an excellent referral network of experts in the field all dedicated to working with our families to help find answers.” …