The Be Loud! Center for Young Adult Cancer Care, opening this fall, was designed by former UNC cancer patients and is led by Lauren Lux and Andrew “Smitty” Smitherman, MD, at the UNC Adolescent and Young Adult Cancer Program in the UNC Lineberger Comprehensive Cancer Center.
The UNC Adolescent and Young Adult Cancer Program, inspired by the dying wish of 15-year-old Sophie Steiner of Chapel Hill, has led the nation in revolutionizing the supportive care of adolescents and young adults, through various programs and staff dedicated solely to serving this unique population of cancer patients.
This fall, the UNC Lineberger Comprehensive Cancer will open the Be Loud! Center for Young Adult Cancer Care, a new outpatient clinic for adults ages 18 to 39 on the third floor of the N.C. Basnight Cancer Hospital in Chapel Hill. Its name honors the Be Loud! Sophie Foundation, a Chapel Hill-based organization working to transform the care and support for adolescents and young adults (AYA) with cancer. The creation of the space would not have been possible without support from Teen Cancer America, First Citizen’s Bank, and many committed donors from the Be Loud! community
Former young adult cancer patients designed this clinic space, the latest effort in a long and inspiring line of programs and services at UNC Hospitals dedicated to this population of cancer patients.
The Mission, the Center
The UNC AYA Cancer Program offers one-on-one support and counseling; AYA-specific resources around finances, work, school and emotional support; recommendations for clinical trials and treatment protocols; AYA survivorship care; help with issues like fertility preservation, sexual health and function and contraception; care coordination and connection to other UNC cancer support services; programs and events for patients; and connections with other AYA individuals with cancer. Thanks to the leadership of AYA Cancer Program director Lauren Lux and medical director Andrew “Smitty” Smitherman, the UNC AYA Cancer Program is one of the most comprehensive programs of its kind in the country.
One of the many things AYA cancer patients told staff over the past 10 years is that receiving inpatient and outpatient cancer care with individuals their same age is more meaningful than any medical test could quantify. So, the AYA Cancer Program set out to create a new space where AYA patients could receive care in the same location, an environment built specifically for young adults. With generous support and buy-in from UNC Hospitals and Lineberger Cancer Center leadership, the AYA program was able to create such a space, which is scheduled to open in late October 2023.
“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 during a dedication event. “They’re not little kids and they’re not older adults. So, when they’re in treatment and sit next to pediatric patients that are 10 years younger than them or they’re on the adult side of the cancer hospital and they’re sitting next to patients who are 20, 30, 40 years older than them, 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.”
The ability to look around and see that there are other young people who have been diagnosed with a cancer and that ‘you’ are not the only one, is powerful in a way that is really hard for staff to explain, Lux said.
Smitherman said, “Our team is really excited to think about innovative ways we can deliver healthcare by having patients in that space together. How can we improve our models of care? How can we study and understand the impact a space like this and an AYA program like ours might have on outcomes for cancer patients? We look forward to learning more so we can support other programs and help them create great spaces and programs that will help support AYA cancer patients across the country.”
Lux, who has presented at conferences and hospitals around the country and is a founding member of a national AYA organization, said building AYA cancer care and support programs might be more difficult to establish elsewhere.
“We wouldn’t be here without the phenomenal leadership at UNC Lineberger and UNC Hospitals,” she said. “Smitty and I talk with AYA programs around the country that are just getting started or midway through their development, and they are very stuck and do not have the support of their institution. We know UNC believes in what we’re doing and supports the mission of the work. We have never had to make an argument to keep supporting us, not once. Everyone has been on the same page about how critical this mission is, and that is a huge gift to us.”
The Inspiration
When Sophie was sick in bed in the N.C. Children’s Hospital in 2013, she had many visitors – friends and family, Carolina field hockey players, dance instructors and others – to be sure Sophie was seen as the beautiful, unique, fiery teenager she was. 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 Sophie knew the final treatments were failing, she asked her parents Niklaus and Lucy Steiner for one last thing. While grieving, they made sure that her last request was placed at the end of Sophie’s obituary, which read in part, “Sophie wanted to raise money for the social worker on the fifth floor of UNC Children’s Hospital, who helps families cope with the enormous challenge of having a child with cancer. We were always so aware of how much support we had and our close proximity to the hospital, and Sophie worried about families who didn’t have these resources.” Therefore, the Steiners asked the community to not buy them flowers but 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 to help adolescent and young adults and their families being treated for cancer at UNC.
Not only named after Sophie, the foundation to honor a meaningful line in a poem Sophie wrote as a teenage 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 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 solely dedicated to addressing the unique needs of AYA cancer patients ranging in age from 13 to 39.
With funding from the Be Loud! Sophie Foundation, Lineberger launched the UNC Adolescent and Young Adult (AYA) 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 Andrew “Smitty” Smitherman, MD who was 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, not long after his dad died of cancer at age 40. Jesse’s treatment was successful, but in 2017 – as he worked at UNC as a resident chaplain – he was diagnosed with a progressive recurrence of stage-3 melanoma.
“My world flashed and crumbled before me,” Jesse said at the dedication event. “After surgery and before starting an immunotherapy clinical trial treatment, I met Lauren Lux, and in Lauren I saw someone I trusted with my life and my death, and she became an integral part of my care team from day one through this day.
“The one infusion I received in the standard infusion space is exactly what Lauren spoke to,” he added. “I felt lost at sea among people who appeared to have more age-appropriate diagnoses, and they were surrounded by people that I imagined were long-time family, neighbors, spouses and even adult children. Sitting there was one of the hardest moments of my in-hospital care. Since then, I have met many AYAs both professionally and personally who share these lost-at-sea moments, despite their healthcare providers’ best efforts and intentions.”
Jesse co-created the UNC AYA Patient Advisory Board, which has played an integral role in the design and creation of the Be Loud! Center for Young Adult Cancer Care.
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 décor features artwork, including photos of nature by Sophie Steiner and Richard Westin, a former patient who made his voice heard to help inform the AYA care at UNC Hospitals and the continued development of UNC’s AYA Cancer Program.
“Out of our patient experiences, we focused on trees because we know the earth is big enough to hold our grief and our beauty,” Jesse said. “We focused on choice in each suite because we know the value of autonomy. And we focused on relationships, because we know that life multiplies through interconnection.”
The space will feature rotating artwork by patients and caregivers, allowing them to contribute to the healing of their peers. A framed guitar hangs on the wall, signed and gifted by The Who’s Roger Daltrey and Pete Townsend, who were driving forces in the creation of Teen Cancer America. And there is a plaque recognizing the AYA Program’s many supporters, including Teen Cancer America and First Citizen’s Bank, as an encouragement for patients who will receive care in the space.
The Legacy
At an open house event in late summer, Lux, Smitherman, their team and Niklaus and Lucy Steiner welcomed dozens of supporters, former patients and AYA cancer care staff into the new center.
“The thing that struck us the most when we first walked into the center was how beautiful the trees are on the window shades,” Lucy said. “All the forest design elements – the trees, the leaves, the flowers and the moss – bring an immediate sense of calm and peace. The architects did an amazing job of bringing the beauty of nature into what can be a very sterile and impersonal environment.”
Niklaus said, “I think Sophie would have loved knowing that her idea to help other teenagers and young adults facing a cancer diagnosis has had this extraordinary impact. In many ways Sophie was typical of other teenagers in the way she questioned herself and her place in the world. But in other ways she absolutely knew her own mind and was very clear on what she thought was right. I know she would love the people on the AYA team and she would be so proud to be a part of the work they do every day. And she would love the new AYA space!”
In the ten years since Sophie was a patient at UNC, the Steiner family remain in awe of the support their foundation and the AYA program receive from UNC and the wider community.
The Be Loud! Sophie Foundation has raised $2.2 million in 10 years through various events that try to capture Sophie’s spirit, including an annual benefit concert at the Cat’s Cradle, the legendary music venue in Carrboro, NC. The foundation’s future goal is to raise at least another $1 million to fully fund the endowment to sustain the UNC AYA Cancer Program in perpetuity.
“This is important to us, our board and the AYA team for a number of reasons,” Niklaus said. “First, we want young adults who come to UNC for treatment to have this program available to them forever, and the endowment helps ensure that. Second, the funds from the endowment will allow the AYA team to continue to be creative in how they grow and deepen the work they do. Funds from the endowment will give them the flexibility to think big and do new things.”
For example, the AYA team wants to fund a small team of navigators to help patients being treated at UNC Health hospitals across the state, and the endowment would help them complete that project, thereby expanding its reach of patient care.
The opening of the Be Loud! Center for Young Adult Cancer Care marks the beginning of something unique in cancer care for a particular population of patients. It’s also a milestone along a 10-year journey the Steiner family never wanted to take but will continue. When Sophie got sick and made her last wish, the Steiner family remained true to her and her spirit. And they didn’t have to do it alone.
“So many people have contributed their time, their money and their talents to help make the UNC AYA Cancer Program such an amazing success, and we are constantly amazed at the ways people have stepped forward,” Lucy said. “We are so grateful to Shelley Earp, Don Rosenstein, Stuart Gold and Ian Davis at UNC Lineberger for their unwavering support for the program, and we are also so grateful to the countless musicians who have played at our annual Be Loud! benefit concerts, the high school students who biked across the country to raise money and awareness, and all of the thousands of donors who have given what they could to help young adults at UNC facing the uncertainty of a cancer diagnosis have the support they need to help them maintain their dignity, identity and independence.”
Written by Mark Derewicz, UNC Health director of research news.