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Marlo Thomas


Strong-Arming Death: The Summer Wilson Story

Posted: 08/30/2012 8:49 am

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."summerwilson.jpg


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."

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  • A Threatening Tumor

    Summer Wilson was born five-and-a-half weeks premature, and while she was a beautiful baby, it was clear that something was terribly wrong. Summer had been born with a tumor on her forearm that was already the size of her head. Three weeks after she was born, the turmor had doubled to almost one-quarter of Summers five-pound birth weight. It was also so aggressive it had already broken through the skin.

  • The Diagnosis

    At first, Summer's doctors could not diagnose the exact nature of the mass, though they knew it was deadly. Their only advice to Summer's parents, was to take her home and love her, because she would be lucky if she survived six months.

  • Undergoing Treatment

    Summer started chemotherapy treatments at St. Jude's when she was just five weeks old and endured a harsh regimen of cancer-fighting drugs. Within three months the mass on her arm had "melted" to half its size. Doctors then proceeded to surgically remove the rest of the tumor, a lengthy procedure that required the utmost care in order to preserve the functionality of Summer's arm. The visible scar on her arm shows where the tumor was removed.

  • Physical Therapy

    After the surgery, Summer had no movement in her fingers and her doctors weren't sure if her hand and arm would ever be normal. But with continued physical therapy and monitoring at St. Jude's, Summer's arm continued to get stronger. Here, at age seven, Summer works with a therapist at the hospital.

  • Unlimited Determination

    Summer's doctors weren't sure if she would ever have full use of her hand and arm, but she was determined not to be held back. As Summer grew up she set herself small goals to overcome any limitations. Here, at age seven, she takes on the monkey bars with both hands, which was one of her main goals at the time.

  • Cured By Age Five

    All told, Summer's treatment lasted less than a year and by the end of that year she was in remission. And because of the tireless efforts of her doctors at St. Jude, by the time Summer was five, she was essentially cured.

  • Eight Years Old

    At eight years old Summer was always on the go. Here, on a family trip to Canada, the pilot gave Summer a front row seat in the cockpit of the airplane.

  • In Paris

    Summer has always been an energetic and enthusiastic girl. Here, lucky Summer is on a family trip to Paris, striking a pose in front of the Eiffel Tower.

  • All Dressed Up

    Celebrating in style, Summer is dressed for the occasion while attending a birthday party for a family friend in 2006.

  • Exploring New Waters

    As she's grown up, Summer has continued to take on new adventures. Here she takes a quick break from exploring the waters of Hawaii while snorkeling there on vacation with her family.

  • On The Beach

    Here, Summer works hard to build a sand empire on the beach in San Juan, Puerto Rico in 2007.

  • Summer's Family

    Throughout her illness, Summer's family refused to give up on her. When no doctor was willing to take in the premature infant, Summer's mother, Deanna, didn't give up the search for someone that could help her daughter. Here, the family poses while on vacation in Hawaii.

  • Stronger Every Day

    Because of the tireless work of the doctors at St. Jude, and their attempts, not only to save Summer's life, but also her arm, today, she lives her life like every other child. Here, Summer shows off her strength as she gears up to zip line in Mexico, in 2011.

  • Zip Lining

    With both hands clasped tight around the hand grips, Summer takes off on a zip line while on a vacation in Mexico.

  • Mother & Daughter

    Although she was devastated when doctors first told her Summer would not survive, her mother Deanna didn't stop until she found someone willing to try to save her baby girl. "The lesson I took away from Summer's recovery," reflects Deanna, "is that if you've got a child with some catastrophic illness, trust your instincts. If you're not comfortable with the answers you're getting, keep looking, because someone out there has the answer you need." Here, the mother-daughter duo stand together at an event.

  • 10-Years Cancer Free

    Today, Summer is more than 10 years cancer free and has a sports resume that includes vigorous, and arm-essential activities, such as horseback riding and gymnastics. Here she is in the stable with her beloved horse, Cooper.

  • Connected To Something Bigger

    Today, at age 15, Summer is an outgoing and energetic high school student who celebrates life every day. She takes a very philosophical approach to her brush with death in her infancy. Although she may not remember her own struggle, she's spent time every year at St. Jude, where she's witnessed other children fighting for their lives as she did. And that has connected her to something larger than herself.

The doctors' first priority was to save Summer's life by removing the tumor. But they were also determined to try to save her arm.

Summer began chemotherapy treatments when she was just five weeks old -- on what would have been her due date -- and endured the brutal regimen of cancer-fighting drugs. Within three months, the tumor had "melted" to half its size. That progress allowed doctors to remove the rest surgically, a three-hour procedure that required the utmost care in order to preserve the vital nerves and tendons and arteries that would hopefully permit Summer the normal use of her arm.

Deanna was initially worried when her fragile child awoke from surgery. Her arm was intact, but Summer had no movement in her fingers, and no one could say for sure if her hand or arm would be normal, or if she might have been better off with a prosthetic arm.

So the waiting game began. "We let her heal, and let her grow a bit," remembers Deanna, "then waited to see what would happen."

What happened is that Summer got better. As a result of the tireless work of St. Jude doctors and scientists, the perseverance of Summer's parents, and the remarkable resilience of the little girl herself, today Summer is more than 10 years cancer-free. At age 15, she is an energetic and outgoing high school student; and though her arm has some limitations, she takes it all in stride.

"My left arm is stronger because it makes up for what my other arm can't do," she enthusiastically told me. "My body has learned to do things differently." As a child, Summer had given herself simple, incremental goals to help her triumph over any setbacks from her life-threatening condition, like swinging on the monkey bars with both arms -- and today, she is no less fearless. Her sports resume has included such vigorous activities as horseback riding, gymnastics and tennis. She's even ridden on a zip-line.

"And if there's anything I can't do, like carrying something," Summer says, "my closest friends are very catering to me. They say they're all so happy I'm still here, that they never think twice about lending a hand."

Summer's personal victory has had a huge impact on children everywhere: St. Jude doctors and scientists now apply what they learned from her case to other children who are afflicted with the same disease. According to Summer, this learning process never ends. "That's one of the great things about St. Jude," she says, laughing. "Whenever I go in for my annual checkups, they ask me a ton of questions. They're always doing research."

But beyond the science, beyond the medicine, beyond the indelible memories -- both wrenching and joyous -- this chapter in the life of an ordinary family has yielded powerful lessons.

"What I took away from Summer's recovery," reflects Deanna, "is that if you've got a child with some catastrophic illness, trust your instincts. If you're not comfortable with the answers you're getting, keep looking, because someone out there has the answer you need."

As for Summer, who dreams of one day becoming a psychologist or oncologist, she looks back at her near-brush with death philosophically.

"Learning about what I went through has made me more humble," she says. "It's taught me that life can be taken away from you at any moment. I think about that a lot -- about how lucky I am to be here. There are so many kids who die every day from cancer that I feel really blessed to be here, and I don't take that for granted. Life's too short, and you can't really fuss over the little things. It's so important to stay positive."

As Deanna proudly told me, "Summer is a very compassionate child with a heart of gold, and I think that's because every year since she was a baby, we have made those trips to St. Jude. Imagine that -- she's been there every year of her life. That had an important impact on her. She has seen other children there fighting for their lives, as she did. And that has connected her to something larger than herself."


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