Health Care

September 1, 2014

Chapel Hill girl's dream may lead to better treatments for young cancer patients

Sophie Steiner, a Chapel Hill teenager, left a growing legacy after her death at 15 - an effort to improve the lot of young oncology patients like herself.

Sophie Steiner had battled an aggressive germ cell cancer for almost a year – with charming pluck and a wizened emotional depth – when she looked searchingly at her mother and posed a tender, but probing question.

At just 15 years old, the high school freshman knew her body had been so ravaged by disease and tumors that dreams of high school graduation, college, career, wedding and other milestones would likely be just that. Dreams.

Sophie’s life was coming to an end. She was searching for meaning, a clarity of purpose. She wanted to know what her place in the world should be, “her thing.”

Sophie, who could amaze, delight and occasionally frustrate her family with her bracing authenticity and candor, was determined not to let the cancer draining life from her teenage body define her. But she was not sure, at such a young age, how she might be remembered.

Sophie had spent most of her freshman year of high school in the hospital, where she built a network of friends, fans and admirers as she walked enough laps around the halls to log 26.2 miles – her own marathon.

Sophie had gotten to know the life stories of her many nurses and doctors, relishing that she knew more about engagements, pregnancies and their activities outside work than some of the adults.

Sophie also became keenly aware in her extended stay at the UNC Children’s Hospital of what the National Cancer Institute calls a “no-man’s land” between pediatric and adult oncology.

One of her dying wishes was to do something that might help bridge that gap.

As Lucy Steiner pondered her middle daughter’s question about where she fit into the world, she thought about Sophie’s love of dance and the long lines she created with her slender limbs.

She considered the photographs Sophie took on the family’s travels around the world and the blog she had created, long before she became sick, to unleash her innermost thoughts.

Those all were a part of Sophie, but there was more.

Lucy Steiner told her frail, ill daughter that “her thing” was to use her amazingly mature insight to connect with people in an adult way inside a hospital where a team of health care providers marveled at her spirit and determination not to dwell on despair.

Be Loud! Sophie

Though cancer is much more common in adults than children, the American Cancer Institute estimates that one in 285 children in the United States will be diagnosed with the disease before the age of 20.

This year, about 10,450 new cases will be diagnosed in children under 14, and 5,330 in 15- to 19-year-olds.

Some of the patients in that adolescent-young adult age group are treated in children’s cancer units and others in adult units.

Sophie Steiner was able to work with her legion of admirers to make her stay in the UNC Children’s Hospital as comfortable and as meaningful as she could: The UNC field hockey team visited her on her birthday; a dance instructor came onsite for her; and she tried massages, restorative yoga and acupuncture to ease the body aches. But Sophie realized others were not as fortunate.

Sophie’s life ended on Aug. 30, 2013, and her family has spent much of the past year channeling their grief into efforts to keep her dreams alive.

“Sophie led a full life in her 15 years,” her father, Niklaus Steiner, director of the Center for Global Initiatives at the University of North Carolina, recalled recently. “She got to travel and meet such interesting people. While it was heartbreaking that it was far too short, it was quality and not quantity.”

The Steiners have created the Be Loud! Sophie Foundation to help raise money to aid teen cancer patients and their families at UNC Hospitals.

Through local music fund-raisers and other grassroots events, they have pulled in more than $150,000 with visions of building a $2 million endowment.

They have turned Sophie’s old bedroom into a foundation home office, of sorts, though many of her personal touches and effects are on the shelves and walls.

As the anniversary of Sophie’s death approached, Niklaus and Lucy Steiner and Sophie’s older sister, Elsa, gathered in the upstairs bedroom to talk about their efforts to heighten awareness about teen cancer issues gaining attention in U.S hospitals.

Across the country, hospitals have begun to add dedicated teen and young adult cancer units based on a model developed by the Teenage Cancer Trust in Great Britain.

Through such programs, medical oncologists are teamed with pediatric specialists, therapists and social workers to offer integrative treatment.

In many cases, teens with cancer face social isolation at a period of life when much focus is on friends, budding independence and plotting a path toward young adulthood.

Treatments often rob them of time and energy, making it difficult to keep up with the schoolwork and activities typical of teenage life.

In addition to building care teams, there also are efforts to dedicate hospital wings or halls where teens can be with other teens rather than scattered among adults or children.

‘Turn on the light’

Sophie Steiner was just weeks into her freshman year at East Chapel Hill High School when her mother took her to a doctor after she couldn’t shake severe abdominal cramps.

Sophie had made the field hockey team and was excited about the coming school year, but her pain had become overwhelming in September 2012.

That trip led to a diagnosis no one expected and an ensuing nine months that, despite the looming face of sorrow, brought much laughter, joy and poignancy.

Sophie cooked though she did not have much of an appetite. She exercised despite the aches of her illness.

She turned to her Harry Potter books for comfort and wisdom, painting a quote from Professor Dumbledore on a poster that hangs in her room today: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

And as she realized her days were limited, she told her older sister to do something “big” with her life for the both of them.

Sophie left a glimpse of herself and her hopes for the world in her online blog. In one of her free-flow musings from Dec. 1, 2011, Sophie wrote:

“I realized that I want to do something with my life. I want my name on a board in a conference room saying ‘Sophie Steiner did this with World Peace. We should invite her to come and talk. We should be more like her!’ But isn’t that what every person wants? To be famous?”

Though her name might not be on a conference room board heralding world peace, Sophie Steiner’s family intends to make sure her name is attached to efforts to reshape teen cancer treatment.

Two foundation board members will join 10 other runners on Sept. 5 and 6 at the Blue Ridge 200-mile relay to raise money for the cause.

The second Raise a Racquet fundraiser is set for Oct. 10 at the Farm in Chapel Hill to support programs for adolescent cancer patients.

In St. Louis, where Sophie spent one of her last Christmas holidays, two “self-taught bakers on a mission” will pull a cupcake truck they built through the neighborhood, sending profits to Be Loud! Sophie.

There have been many other fundraisers, small and large, and many more to come.

“This ultimately is a really positive way to channel our grief,” Niklaus Steiner said.

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