Author: Saul Wisnia

Manny: Hoping new research helps others with sickle cell disease

Manny, who is in a clinical trial for sickle cell disease, is examined by his doctor.
Manny at a visit with Dr. Esrick [PHOTO: SAM OGDEN/DANA FARBER]
Emmanuel “Manny” Johnson, Jr., shares many loves with his little brother, Aiden — from basketball to video games. One thing he wishes they did not share is sickle cell disease (SCD), so Manny is playing a role in a new effort to improve treatment for patients like 7-year-old Aiden, himself and others living with the inherited blood disorder.

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Spencer gets back on the court after cancer

Spencer is back on the court after cancer.

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.

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Post cancer, post rotationplasty, teen athlete continues to excel

rotationplasty- Miles playing baseballThe 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.”

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Pediatric stem cell transplant patients fight cancer as karate kids

cancer-karate
Ben Carsen, center, says karate with Cathy and Joe Esposito “gave me a great reason to get up and get my whole body moving, which in turn made me feel better.”

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.

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