“Be loud and explode with light, move with grace, have no fear.”
The UNC Adolescent and Young Adult Cancer Program, inspired by the dying wish of 15-year-old Sophie Steiner of Chapel Hill, is revolutionizing the supportive care of adolescents and young adults with cancer.
Opened in October by the UNC Lineberger Comprehensive Cancer Center, the Be Loud! Center for Young Adult Cancer Care is a new outpatient clinic for adults aged 18-39 on the third floor of the N.C. Basnight Cancer Hospital. The Be Loud! Sophie Foundation honors Steiner and a meaningful line she wrote before being stricken with a rare, aggressive and incurable form of cancer: “Be loud and explode with light, move with grace, have no fear.”
The inspiration
When Steiner was in the N.C. Children’s Hospital in 2013, she refused to let her cancer diagnosis define her. She still danced. She still laughed and made wisecracks. And she still cared about and loved people.
One day, when Steiner knew the final treatments were failing, she asked her parents Niklaus and Lucy Steiner for one last request in her obituary: to donate money to support adolescents and young adults facing cancer at UNC Hospitals.
Unexpectedly, tens of thousands of dollars poured in, and the Steiners – including Sophie’s siblings Elsa and Annabel – started the Be Loud! Sophie Foundation. The foundation, driven only by volunteers and with no paid staff, started raising money to bring about systemic change with the goal of funding a position at UNC Lineberger dedicated to addressing the unique needs of 13- to 39-year-old cancer patients.
With funding from the Be Loud! Sophie Foundation, Lineberger launched the UNC Adolescent and Young Adult Cancer Program and hired social worker Lauren Lux as program director in 2015. Since then, Be Loud! Lineberger, UNC Hospitals and other sources have raised enough money to increase the staff of one to a staff of 10 – and soon to be 11 – including medical director Dr. Andrew “Smitty” Smitherman, hired by Lineberger in 2017.
For the people, by the people
Jesse Sorrell, a former patient at UNC Hospitals, was 22 when he was diagnosed with melanoma in 2010. Sorrell’s treatment was successful, but in 2017 he was diagnosed with a progressive recurrence of stage-3 melanoma.
“My world flashed and crumbled before me,” Sorrell said at the dedication event for the clinic.
Sorrell co-created the UNC Adolescent and Young Adult Patient Advisory Board, an integral part of the design of the Be Loud! Center.
The center features a lounge and seven suites, each with a large chair for the patient and two seats for visitors. There are no televisions. Lights and dividers are adjustable. Windows are large to let light pour in, and blinds feature a tree design, as does the floor.
The space will feature rotating artwork by patients and caregivers. A framed guitar hangs on the wall, signed and donated by The Who’s Roger Daltrey and Pete Townsend, driving forces in the creation of Teen Cancer America.
“The crux of the issue and why we built this space is that teenagers and young adults can get lost in the healthcare system,” Lux said. “They’re not little kids and they’re not older adults. So it can feel like they are the only one their age going through what they are going through. This isolation is not a good feeling, and it isn’t necessary.” [source]