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To see 11-year-old Jenny skate it's hard to imagine her parents were once told she might never walk normally again. Jenny, who plays left wing for on an all-girls' youth hockey team, has spent most of her young life inside a hockey rink, pursuing a family passion passed down by her two older brothers.
In 1998 after discovering a lump above her right ankle, Jenny's parents, Karen and Steve, learned their 3-year old daughter had Ewing's sarcoma, an aggressive, malignant solid tumor of the bone. Ewing's is rare, especially in a young child. On average, 200 children are diagnosed each year in North America, most of them teenage boys.
Hoping to give Jenny the best shot at beating this rare cancer, Karen reached out to her cousin who worked at St. Jude's Hospital in Memphis, Tennessee. "He told me to go to Dana-Farber Cancer Institute and find Holcombe Grier, MD, a well-known authority on Ewing's," remembers Karen. "We had already met Dr. Grier after the initial biopsy, so we knew we were in the right place."
Jenny was treated at Dana-Farber's Jimmy Fund Clinic and partnering Children's Hospital Boston. Over the course of 18 months, she received 17 rounds of chemotherapy and had seven surgeries. The scar that extends from her right knee to her ankle is a permanent reminder of her ordeal.
Karen, a founding member of the Pediatric Patient and Family Advisory Council (PPFAC), doesn't need to see her daughter's scar to recall the emotional roller coaster her family rode. It took a toll on Jenny's brothers, now teenagers. "We went from being happily immersed in the organized chaos of our young family, marking milestones such as the first day of school, to being a cancer family," says Karen. "In an instant we were faced with the prospect of Jenny losing her leg and had to make other decisions that threatened the quality of her life."
Yet what Jenny remembers is the fun she had in the Jimmy Fund Clinic play room, painting her hospital roommate's fingernails, and of course, hockey. "I am a rink rat," she states proudly. "My dad is a coach and my big brothers play hockey. At first I thought I would be a figure skater, but that changed after I skated with a hockey stick for the first time." Karen chuckles at the statement, remembering that Jenny visited her first skating rink when she was just weeks old.
Skating, however, would not come as easily for Jenny as it did for her brothers. In addition to four surgeries on her right leg, the muscle that controls the lateral motion of her foot was removed. She spent nine months in a full leg cast followed by several months of physical therapy. Karen vividly remembers her daughter learning to walk a second time, not to mention learning to skate. "It was very hard in the beginning," recalls Jenny. "I couldn't control my right leg. I skated with my ankle bent almost sideways, and I would get blisters and sometimes bleed, but I didn't give up."
She glided her way onto the boy's hockey team and later onto an all girls' team. In 2004, she received an award given to a hockey player in her town, in memory of a devoted hockey dad who died of cancer. It recognizes a player who "exemplifies this father's legacy of courage, dedication, and refusal to surrender when quitting would be easy." In 2006, her all-girls team advanced to the state hockey tournament.
In her spare time, Jenny plays the flute and softball. She is a green belt in karate and a straight-A student. She also just happens to be one of the fastest runners in her elementary school, where she just finished fifth grade. "Having cancer taught me a lot," says Jenny. "It taught me to think of other people, not only myself." True to her word, the youngster donated 11 inches of her hair to Locks of Love, an organization providing hairpieces to patients who have lost their hair from medical conditions.
"Jenny recently had her annual appointment with Dr. Grier at the Jimmy Fund Clinic, and he still makes her laugh," says Karen. "She has the same wonderful attitude that carried her throughout treatment - she never complained. Jenny also happens to be a very caring and kind child. Except, of course, to her brothers."
— Cyndi MacKinlay