UNC Health Talk

The Gift of Sophie

Sophie Steiner, 15, lying in bed on the fifth floor of UNC Children’s Hospital, asked her parents for one last thing. None of them had any idea this one last thing would transform cancer support services for teens and young adults at the UNC Medical Center. But her request has done just that.

Sophie had been battling cancer for almost a year and treatment options had run their course. Yet, she was thankful her family was so plugged into the Chapel Hill and university communities that she never wanted for anything and was never alone unless she wanted to be. She was thankful that hundreds of people rallied to support her when she was stuck in the hospital for weeks at a time, thankful for all her friends being close by and ever helpful.

When Sophie saw other teens in the hospital, she noticed most of them had no such support. They were alone for long stretches. Their parents didn’t work a stone’s throw from the hospital, like Sophie’s did. Their friends couldn’t just swing by after class. Their dance teachers couldn’t come by for an impromptu lesson in an empty corridor. Their favorite sports team – say, the UNC field hockey team – wouldn’t drop by to give them jerseys with their names stitched to the backs, like the team did for Sophie.

The teens and young adults Sophie saw received great medical care but it wasn’t the medical staff’s job to relate to teenage patients or to help them deal with a cancer diagnosis while also trying to figure out who they were as people during an incredibly transformative time in their lives.

Sophie fought through the worst prognosis imaginable – a rare cancer with a treatment that didn’t work for her – to stay true to who she was. And who she was was a no-nonsense, tell-it-like-it-is, authentic, opinionated, talented, passionate teenager desperate not to let cancer define her. About a year before she got sick, she wrote a poem that included the lines: “Be Loud, and move with grace, explode with light, have no fear.” In the hospital, as she put that poem to the test, her family and community rallied to help her. And Sophie couldn’t help but think of other teenage patients on the fifth floor.

And so, one day Sophie pulled her parents aside and asked them, quite simply, to help these kids. When she’s gone, she told her parents, please help them.

Through their grief, Sophie’s parents Niklaus and Lucy Steiner heard their daughter loud and clear but didn’t know what such help might look like. So, when Sophie passed away in September of 2013 and her family wrote her obituary, they put a line at the end that read: “In lieu of flowers, please consider making a donation to the Sophie Fund.”

“We really didn’t know what that meant,” said Niklaus, who is the director of UNC’s Center for Global Initiatives. “Maybe we would buy gas cards for parents and friends of kids at the hospital to make it easier for them to travel here from other parts of the state. Maybe we would be able to buy stuff to help these kids. We honestly didn’t know.”

Within a few months of Sophie’s memorial service, people had sent so much money to the Sophie Fund that the Steiner’s youngest daughter Annabel told her parents, “You know, this is enough money to start a foundation.”

And the Be Loud! Sophie Foundation was born. Named after Sophie’s poem, the foundation dedicates itself to supporting teens and young adults, to ensure they receive age-appropriate medical care and psychosocial support at the UNC Medical Center.

Once the foundation was established in January 2014, the Steiner family realized that hardly any hospital around the country had dedicated staff to support adolescent and young adult (AYA) patients in the ways they and the UNC-Chapel Hill community had supported Sophie.

The singular goal of the Be Loud! Sophie Foundation became to fund a position at the UNC Lineberger Comprehensive Cancer Center to oversee such psychosocial support for young people with cancer. Not only did the Be Loud! Sophie Foundation continue raising money – thanks in large part to incredible support from the Chapel Hill and UNC communities – but they started meeting with leadership at Lineberger to pitch their idea and received invaluable guidance in this effort from Stuart Gold, MD, one of the doctors who treated Sophie and the head of pediatric oncology at the UNC Medical Center.

Don Rosenstein, director of the Lineberger’s Comprehensive Cancer Support Program, immediately saw the need for such a position. And when Lucy Steiner dropped off a check for $100,000 earmarked for the creation of this position in fall 2014, Lineberger began the process to make Sophie’s vision a reality.

Two years after Sophie’s passing, a clinical social worker from the Midwest named Lauren Lux began working as the first director of UNC Lineberger’s AYA cancer support program. And in the year since, this program has grown into a model of AYA cancer care for hospitals around the country.

It’s difficult to sum up the art and science of Lux’s job because in a lot of ways her job is specific to each patient. But as part of her work, Lux spends time with patients during long hospital stays and in the outpatient clinic, developing relationships with them, talking with them about anything that’s on their minds, joining them in activities they enjoy – such as walking, visiting the Teen Center, watching movies, playing pool – all in an effort to help them maintain their sense of independence, dignity, and identity, which in turn helps them feel better and live life, to stay true to who they are.

Lux arranges for AYAs to have access to complementary medical approaches that interest them – activities such as massage, yoga, acupuncture, and meditation. She finds resources specific to this age group, such as websites to connect with other AYAs, directions for creating a blog, and information about a wide variety of age-appropriate community resources. In collaboration with her pediatric and adult colleagues, Lux organizes regular events and programming that promote peer support and healthy adolescent and young adult development. She designs these things specifically for this age group and tailors her program to meet individual needs and interests. For instance: for a dancer, this might mean a modified dance class in the hospital. For a musician, it can be regularly connecting with a college student who plays the same instrument. For an athlete, it could mean visits and personalized training opportunities with UNC student athletes.

On the research front, Lux works with clinicians and researchers to make sure patients understand their options for clinical trials, and she collaborates across UNC and with national and international organizations to conduct research. The program’s goal for growth includes adding staff to ensure that AYAs are enrolled in appropriate trials.

In the summer of 2017, the AYA Cancer Support Program added a medical director, Andrew Smitherman, MD, tasked with improving medical care for AYA patients.

Lux works with UNC leadership to modify policies, such as those surrounding fertility preservation. She works to give adolescents and young adults more freedom to move around the hospital, as well as information about places they might enjoy, such as the Teen Center, the Starbucks patio, the labyrinth, the chapels. She works to minimize disruptions during the day, allowing AYAs to opt out of support services that don’t meet their needs. She helps block out time during the day when only nurses and doctors can enter their rooms.

Lux helps increase interactions between adolescents and young adults, who consistently report that two things make huge differences in their hospital experiences: one, having unstructured interactions with peers going through what they are going through and, two, not feeling isolated and lonely amid the populations of much younger or older patients.

Lux, who also trains social work interns and manages medical residents who rotate through the program monthly, is involved in a national effort to bring together and educate other AYA providers through Teen Cancer America – an organization focused on working with hospitals to address the various needs of this age group.

Lux, it could be said, helps facilitate all the things the Steiner family, their friends, the Chapel Hill community, and the university community did when rallying to support Sophie during her long, difficult stays in the hospital. Only Lux leads this effort to help dozens of people at a time.

It might be true that – even without Sophie Steiner’s story – all this work would eventually have found its way into the sort of empathetic and expert care UNC Medical Center aims to exemplify. It might be true. What we know for sure is that AYA cancer support at UNC and Sophie’s story are linked forever.

“I think of Sophie as a matchstick that lit this fire,” Lux said. “And it’s a very cool thing to be able to fuel those flames.”

To support Lineberger’s AYA Support Program please consider making a gift here.