• Defining Moment

    Caped Crusader

    Adventures in therapy with a patient who is super inspiring.

    • By Kelly Nickelson, PT, CEAS
    • June 2014
    Defining Moment
    The author stretches Sam's legs at the end of a physical therapy session
    Courtesy of The Fulton Sun

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    I practice at a private outpatient clinic in a community of approximately 12,000 people. We primarily treat orthopedic patients, but because this is a small community we also sometimes treat pediatric patients and people with neurologic issues. The variety, as well as the occasional rare case, helps keep my job interesting.

    Last December I got one of those rare cases. Sam is an energetic 5-year-old boy who was diagnosed in August 2013 with rhabdomyosarcoma. RMS accounts for only about 3% of all childhood cancers. Roughly 350 new cases are diagnosed each year in this country.

    Sam's cancer was located in his nose. He underwent extensive surgery to remove as much of the cancer as was possible, and then began weekly chemotherapy at St. Louis Children's Hospital. Because Sam and his family are members of my church—they draw great strength from their faith and from the church community's support—I had followed Sam's case since his diagnosis.

    Part of his treatment involved neurotoxic chemotherapy drugs. After several weeks of having them administered, Sam started to have symptoms of peripheral neuropathy. He was losing grip and pinch strength in his hands, which made his schoolwork more difficult. Sam also started to experience drop foot, which caused increased stumbling and put him at a higher risk of fall-related injuries. He was placed on medication to counteract these symptoms, but his parents reported that the new drug was causing behavioral changes and other undesirable side effects. His care team at the hospital gave Sam's parents a list of activities of daily living modifications to try at home. They also suggested that he receive physical therapy.

    I spoke with Sam's mom, Cassie, about how he was doing, and offered to help with Sam's therapy. I added, however, that I don't usually work with children, and that I'd never treated a child with Sam's diagnosis. She looked for a local clinic that had experience with such cases and that would accept the family's insurance, but she couldn't find a fit.

    So, I put myself to work. I intensively researched chemotherapy-induced peripheral neuropathy, read case studies, and brainstormed with a colleague to come up with activities that would engage Sam as he and I worked together to help him reclaim an active life. His first visit with me came 2 weeks before Christmas.

    Five-year-old boys typically are into action and love superheroes. Sam is no different. By the time he arrived at our clinic he already was known in the community as "Super Sam" thanks to the cape he wore to each of his chemotherapy sessions. A story had run in our local paper chronicling Super Sam's journey and stating that he was "kicking cancer's butt."

    Clearly, we needed to make physical therapy fun for our little superhero. He searched for "buried treasure" in a bucket of rice. He broke out of Theraputty "handcuffs." We set up obstacle courses for him to conquer. Super Sam shot a Nerf gun while standing on a balance pad. To encourage him to complete tasks such as stretching, I sometimes had to bribe him with a video game. We worked on his balance while he was playing.

    Sam's family incorporated home activities to further improve Sam's balance and strength ahead of his scheduled trip to Jacksonville, Florida, for proton radiation treatment. He was showing some progress in his gait by the time he boarded the plane.

    Shortly after the family's return from Jacksonville, Sam resumed physical therapy. Cassie noted that he had been tripping often and seemed unbalanced. He was experiencing burning pain in his feet and hands. Sam's chemotherapy schedule in St. Louis resumed. I had to be flexible with the timing of our treatment sessions, because some days Sam still was fatigued from the previous Friday's chemotherapy. On other days, though, he'd be back in superhero mode and we'd push, together, to improve his balance, increase his strength, and decrease his pain.

    Sam completed his last chemotherapy treatment on March 6, and we celebrated that milestone as a community. But he still has a long road ahead of him that includes an additional surgery for his nose and one to remove an osteochondroma from his right knee.

    I feel so blessed to have had the opportunity to work with Sam. I admire his bravery and determination in the face of treatments that many adults cannot bear with similar resolve. Sam has challenged me to help him achieve super results. I won't sugarcoat it—at this writing he still faces long odds. When I see how he battles, though, I must remain hopeful that he will kick cancer's butt—as thoroughly as Superman, Batman, and the other superheroes defeat their archnemeses.

    Although we PTs are mere mortals, we have our own special powers. Helping super patients like Sam achieve their goals is why I cherish my role as their trusted health care
    sidekick.

    Author - Defining Moment

    Kelly Nickelson, PT, CEAS, is a staff member at Atlas Physical Therapy & Sport Medicine in Fulton, Missouri.

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    Defining Moment (formerly This Is Why) spotlights a particular moment or incident that either led the writer to a career in physical therapy or confirmed why he or she became a PT or PTA. To submit your story or find out more, contact Eric Ries, associate editor, manuscripts, at ericries@apta.org.

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