Monday, November 25, 2013

Mother defies doctors that wanted to amputate her daughter Summer Wilson's arm...



Summer Wilson couldn't believe her eyes when her mother, Deanna, handed her a journal written more than 15 years ago -- a diary that she never even knew existed. As Summer leafed through its pages, reading line after heartfelt line, it quickly became apparent that the journal was all about her and how she almost died.
"I don't remember any of it, of course -- I was just a baby," says Summer, who was born with an illness so grave that she almost didn't make it. "But I could see how stressful it was for my mom. It's heavy on your heart when you read about what your parents were going through, and the stress it was putting on the family."
"But the more I read, the more I wanted to thank them for taking care of me, and tell them how grateful I was to be alive."
***

Summer's story began in February 1997. She had arrived five-and-a-half weeks premature, an exceptionally pretty baby, with large eyes and a sweetly shaped faced.
But something was terribly wrong.
"She had this thing growing out of her forearm that was as big as her head," her mom told me last week. Her hometown doctors identified it as a tumor, and within three weeks it had doubled to almost one-quarter of Summer's five-pound birth weight. It was also aggressive, having already broken through the skin.
Then came the shocking news. Although Summer's doctors were not able to diagnose the precise nature of the mass, they knew it was deadly -- and their recommendation to Summer's parents was terrifying.
"They said that, in the best-case scenario, they'd probably need to amputate her arm, and that we'd be lucky if she survived six months," Deanna remembers. "Everybody had pretty much given up on her. They told us that we should take her home and love her."
Though devastated, Deanna refused to give up on her baby girl and became a one-woman research team -- scouring the internet, poring through medical journals and calling children's hospitals across the country, desperate to find someone who could help.
Physicians finally identified Summer's mass as stage-three hemangiopericytoma, a malignant tumor so rare that only nine cases of it had been documented in the country. Even worse, all of the doctors and oncologists with whom Deanna consulted said the same thing -- that the disease was largely a mystery, with no known cure.
"Nobody was willing to take a premature newborn with this disease they knew nothing about," Deanna says. "Nobody even wanted to try."
But then someone recommended to Summer's parents that they contact St. Jude Children's Research Hospital, which not only specializes in treating catastrophic childhood diseases, but whose scientists vigorously pursue those cases that continue to mystify doctors around the world. The St. Jude team told Deanna that Summer's tumor was very rare, but they would try to treat her.
"Those were the most hopeful words I had ever heard," Deanna says -- "that they would try."