Stories about: Cancer

How to manage family life when your child has cancer

Valerie Graf and family
Valerie, with husband Doron, son Evan and daughter Ruby

When our daughter, Ruby, was diagnosed with acute lymphoblastic leukemia (ALL) at one and a half years old, my husband and I were immediately transformed from working parents with two young children, to parental caregivers for a child with cancer. Between hospital stays, medications and appointments, there was so much to keep track of. It can be overwhelming at times, but there are ways to manage life after your child is diagnosed with cancer.

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Dylan discovers a new sport during cancer treatment

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).

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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.

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Pediatric stem cell transplant patients fight cancer as karate kids

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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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Five years after stem cell transplant complications, he’s an active teenager

Drew at 2014 Be the Match Walk in NYC. His stem cell donor lives in Germany.

“It’s eye-opening to realize how fragile life really is when you’re young.”

Drew D’Auteuil certainly knows whereof he speaks. He is a 16-year-old animal-loving, skiing, rowing, volleyball-playing, honor roll student and licensed driver with braces and a shock of red hair. In April 2010, five months after receiving a stem cell transplant to treat the blood disorder severe aplastic anemia, Drew suffered rare, life-threatening complications.

One day Drew was biking with a friend near his New Hampshire home, suffering little more than a mild cough. The next day he was in the intensive care unit at Boston Children’s Hospital, intubated because of respiratory failure. Soon other organs were failing, too. Quick action by ICU and transplant clinicians saved the boy’s life.

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