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Wednesday, April 16, 2014

7-year-old cancer patient finds ways to cope

By Amy Geiszler-Jones
Eagle correspondent

Within two months, Hannah Clark went from being an excited and energetic first-grader at Hyde Elementary School to a girl who complained of lower back pain, was lethargic and fell asleep in class.

“She had the energy of 20 people and was always spunky,” said Crystal Shafer, Hannah’s mother, about Hannah’s life up until October. She used to love reading books or playing Wii video games with her older brother. By November, 7-year-old Hannah was seeing a doctor almost once a week as Shafer sought answers to what was causing so much pain in her only daughter’s body.

When a pediatrician recommended running more tests and seeing a specialist, Shafer said she knew the diagnosis probably would be bad.

“I had worked in the medical field, so I knew when he said oncologist, it meant cancer,” said Shafer, who had worked previously as a medical assistant and at Preferred Health Systems.

Still, she wasn’t prepared when the pediatrician called her while she and Hannah were still in the waiting room at Wesley Medical Center’s CT department, confirmed that her daughter had cancer and recommended immediate hospitalization and surgery.

“I dropped to the floor and started crying,” Shafer said. Hannah came to her side and tried to comfort her.

What doctors and Shafer once had thought might be a bowel or dietary problem actually was a soft tissue mass that was curling around Hannah’s lower spine and making its way into the nerve canal of her spinal cord.

Hannah was diagnosed with rhabdomyosarcoma, a rare cancerous tumor of the muscles that are attached to the bones. Only several hundred new cases are diagnosed each year in the U.S., according to the National Institutes of Health. It typically occurs in children or young adults and is the most common soft tissue tumor in children, according to medical experts.

The doctors hadn’t realized how intertwined Hannah’s tumor was until she underwent surgery in mid-December. They couldn’t remove the tumor. More tests showed the cancer had moved into the bones and another mass had developed next to her right lung.

“So right off the bat, it was Stage IV,” Shafer said.

At first, Shafer didn’t reveal to Hannah that her diagnosis was cancer. She didn’t want her little girl — who earlier that year lost a great-grandmother to the disease — to be scared she’d die, too.

As she underwent frequent rounds of chemotherapy and had to quit going to school because of her compromised immune system and treatment schedule, Hannah came to understand she has a bad disease. Still, Shafer wants Hannah to realize that cancer is a disease that can be beat.

That’s why the two of them will participate in part of the American Cancer Society’s annual Relay for Life event Friday. They plan to do the survivor walk, during which survivors and current cancer patients take a lap around the field.

“I just want to show Hannah that there are survivors and that it won’t get her,” Shafer said. “It’s inspiration for me and for her, and I want her to have positive thoughts. I don’t want her to think that cancer kills everyone who has it.”

Doctors haven’t given Shafer a prognosis for Hannah, but they say she’s responding well to treatments. Recently, Hannah started her 11th round of chemotherapy and her first round of radiation treatments. Shafer hopes Hannah will be cleared to start the first grade again next month.

A few hours after a recent treatment, Hannah was back home, playing with Barbie dolls with her cousins. They were creating makeshift clothes for their dolls, holding the fabric together with hair pins. Hannah talked about how she had loved doing math when she was in school.

When asked what she’d like to do when she grows up, she responded: “You mean like a job? I want to be a cupcake-maker.” Chocolate cupcakes with icing and sprinkles are her favorite, she said. Her mom laughed and said her career choice changes daily.

Because of cancer, Hannah has been able to do “the most favorite thing in my life so far” — ride the pink fire truck used by the Wichita chapter of the Guardians of the Ribbon, comprising former Wichita and Sedgwick County firefighters, to help women fighting cancer. In January, the truck picked up Hannah and her mother in Wichita to take them to a fundraising benefit in Hannah’s honor in Mulvane.

The benefit was one of two such events friends and family organized to help with Hannah’s medical costs, which run about $11,000 a month, Shafer said. Friends and family sold “Hope for Hannah” T-shirts and bracelets, as well.

Shafer said she had to quit her job to focus on Hannah and her treatments and to continue raising her 11-year-old son, Breckin Morgan. When they couldn’t afford a place to live, a friend, and later, a family member, took in the family.

“I’ve had to be stronger through this than I’ve ever thought I could be,” said Shafer, 33. She’s proud of how her daughter endures her treatments — “she’s a trouper,” Shafer said, and she understands how difficult it’s been for Breckin to see his sister and playmate fight this disease.

Doctors have told Shafer that Hannah runs a risk of getting another form of cancer later because of the radiation treatments she’s undergoing.

“So I cherish every moment I have with her,” Shafer said.

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