She’s resilient: 11-year-old faces Ewing sarcoma

Auburn Retreat Family Pic

Part of Maddie’s resilience may come from the way her family deals with her disease. “We don’t make life about the cancer,” her mother, Amy Shaw, explains. Her sister, Alexis (left), and Maddie are shown enjoying a respite with their mom and dad and Chesapeake Bay retriever, Mocha, in Auburn in late spring. (PROVIDED PHOTOS)

BY AMBER SMITH

Maddie Shaw is covered with a plush purple blanket. She grasps an iPad Mini, on which she quietly battles digital zombies, while the last of her chemotherapy flows into her arm.

It’s a Friday at the end of May, and the sixth-grader from Binghamton is completing her cancer treatment.

Nurse Tara Ingersoll has marked the occasion with colored streamers and fringed pom-poms hanging from curtains in the Upstate Cancer Center. Maddie’s parents, Amy and Kevin Shaw, brought cupcakes and a fruit bouquet. Maddie, age 11, is reserved, engrossed in her game.

A woman leaps into her room. She’s got jazz hands, zebra sunglasses and a fervor that captures Maddie’s attention. The girl’s eyes abandon the electronic screen; her face melts into a smile. It’s Jody Sima, MD, her pediatric oncologist.

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On Maddie’s last day of chemotherapy, her father, Kevin Shaw, spent almost five hours riding his bicycle to the Upstate Cancer Center form Binghamton, as part of his training for the Ironman race taking place in July in Lake Placid. He is part of a team of athletes who participate to support Maddie. They wear shirts that say, “It’s not when you finish but why.”

“I push her when she needs to be pushed and love her when she needed to be loved,” Sima explains. Today the doctor leans over Maddie’s shoulder. The two confer privately about the best strategies for defeating the horde of zombies.

Maddie’s diagnosis came in December 2013 after she felt a pain in her hip. Doctors discovered a tumor the size of a softball in her lung. It was Ewing sarcoma, a rare bone cancer. After months of chemotherapy, Maddie underwent surgery in Philadelphia on her left hip. She was in remission until August when the cancer returned.

She renewed her cancer battle, which this time included surgery on both lungs. A month later, fire broke out in the basement of her home, killing Maddie’s hamster and destroying nearly everything her family owned.

While their house is being rebuilt, Maddie, her parents and sister, Alexis, 16, live in a nearby rental home. Her mom and dad took turns driving her to Syracuse for chemotherapy every day for a week, every three weeks, while she was in treatment. This allowed her to attend school in the morning and sleep in her own bed each night.

Sima says Maddie is doing well. “She is a pretty amazing kiddo, and she bounces back quicker than any adult ever would” the doctor told the Binghamton Press & Sun-Bulletin.

Despite missing lots of school this year, Maddie made the high honor roll.

cancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine.

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