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Excerpt: Closer By The Mile

Here is a sample from Closer By The Mile, the story of the Pan-Mass Challenge bike-a-thon for cancer research, published in 2013:

One day Sandy Fitzgerald was out walking with her amber-eyed granddaughter. She asked Hannah: “Do you think we’ll ever take life for granted again?”

“Grandma, never,” she said. “Never, ever.”

When she was seven, right around Thanksgiving Hannah Hughes just wasn’t herself. She was stuffed up and felt tired. A pain in her legs brought complaints, which was unusual. That Friday, when Sandy and her husband had Hannah and younger sister, Fiona, overnight, which is their tradition after the holiday, Hannah barely wanted to hang popcorn strings on the fresh Christmas tree. She’d recently asked Sandy to carry her bags in school. Her parents thought it might be a nagging sinus infection. Dark circles seemed to brood under her eyes, and her eyelids were a strange red. Hannah had black and blue marks all over. Tears rolled down her eyes as Hannah slept beside her grandmother.

Hannah Hughes, right, with her sister Fiona, who donated bone marrow 16 months before to her sister, in their driveway in 2012.

Hannah Hughes, right, with her sister Fiona, who donated bone marrow 16 months earlier to  Hannah, in their driveway in 2012.

When Jeff Hughes took his oldest child to the doctor the next Monday, they found an enlarged spleen and a white blood cell count that was through the roof. Her mom Rana was teaching a third grade class when the principal walked in. Your husband, he said, needs you to call.

Hannah was diagnosed with acute lymphoblastic leukemia. In just a few hours she was admitted to Albany Medical Center and began chemotherapy.

She has a rare genetic abnormality called the Philadelphia Chromosome-positive ALL. Having the chromosome makes one more susceptible to uncontrolled division of white blood cells that cause the disease. While not everyone with the Philadelphia Chromosome has positive ALL, children with positive ALL face an even higher risk of dying than those with some other forms of leukemia. She endured three rounds of treatments through that first winter. Then she underwent a successful bone marrow transplant with a donation from Fiona, who was five at the time. As Hannah’s health inched forward there were months of near isolation, starting with 40 days in her room at Boston Children’s Hospital, to avert any virus that might attack her depleted immune system. Then came a long rotation of checkups with her oncologist close to home in upstate New York, and sometimes driving to the clinic at Dana-Farber.

Hannah endured other trials similar to what many children with cancer face: a grueling rotation of immunizations and intravenous antibiotics, cut off from friends and school life, all while facing the unknown. A knot still tightens within Jeff and Rana as they await a blood cell count, though not quite so taut as in those early months. At one time they dreaded any infection that might compromise her transfusion line. And putting in the double-lumen catheter line during that first week was harrowing. Their brown-haired daughter was emaciated at less than 50 pounds. The surgeon doubted he could do it, as Hannah’s blood vessels were so tiny. He took off his mask, his face exhausted and creased. For an instant Rana thought the worst, the oncologist demanding, “You have to get it in.” Twenty minutes took four hours. Yet the line held. “We owe him a huge debt of gratitude,” her mom now declares.

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