By Bobby Hundley, UNC Health Foundation
The story of UNC Lineberger’s Adolescent and Young Adult (AYA) Cancer Program started with a single spark. A spark in the form of Sophie Steiner, a teen cancer patient who saw what others hadn’t – that cancer care for teens and young adults could be different, had to be different, had to be better.
Sophie passed away in 2013 following 18 months of treatment for germ-cell cancer, but the movement she sparked has continued to grow into a transformational force for AYA patients. Her parents, Lucy and Niklaus, established the Be Loud! Sophie Foundation to serve the unique needs of this community.
“We focused initially on Sophie’s experience at UNC and the extraordinary doctors and nurses and people who supported her,” said Lucy Steiner, while taking a break from sending postcards for the upcoming Be Loud! virtual fundraiser. “But the hospital system itself didn’t have as much to offer a teenager as it did to offer younger kids, so we were really focused then on how to make things better for teenagers who are diagnosed with cancer.”
The initial funds Be Loud! Sophie raised ultimately led to the hiring of clinical social worker Lauren Lux, MSW, and the creation of the AYA Program, which she oversees. Now just weeks away from its five-year anniversary, the program is celebrating its progress while keeping an eye on the future.
“I think it’s just magic, really”
“We’ve had a lot of big dreams since we started, and many have come true and continue to come true,” Lux said. “I’m surprised by how quickly things have grown. We’ve had a lot of success in a fairly short amount of time for a culture change.”
That growth included expanding to a four-person staff after Lux spent the first 18 months of the program as a one-woman band. In 2017, Lux was joined by Andrew Smitherman, MD MSc, known by colleagues and patients alike as Smitty. Smitherman, a former high school teacher, was completing a combined residency in adult and pediatric medicine at UNC and was looking for a way to apply his unique educational background.
“Finding a way to use that training was important to me,” Smitherman said. “I had always had an interest in this age group. I was doing my pediatric oncology fellowship at UNC thinking that it would provide a nice foundation for me to work with this population.”
In addition to Smitherman, Catherine Swift, LCWSA, and Melissa Matson, MSN, RN, have joined the program in recent years.
“We are so incredibly lucky and have so much gratitude for the people involved in this,” Lux said. “I think it’s just magic, really. Our core team is amazing. I would be on the floor, under a table without Smitty. Catherine is incredible, so good with patients and kind, thoughtful and dedicated. Melissa brings experience and perspective as a nurse practitioner. From skill sets to personalities, everybody provides something different but not so different that we don’t get along with each. We really enjoy working together.”
Lux is the driving force behind the day-to-day work that is so impactful to its patients and their families.
“She is such an extraordinary director,” Steiner said. “And the program’s growth is really a tribute to her leadership and her vision for what Sophie did for teenagers and young adults, and how to better care for this population not only at UNC but across the state and even the nation.”
Leadership support from the beginning
Talk to anyone associated with the AYA program, and they will tell you that it wouldn’t be where it is today without buy-in from the leadership team at UNC Lineberger. As dynamic as Lux and her staff are, the program would not have continued its growth trajectory without the support of leaders such as UNC Lineberger Director Shelley Earp, MD, Stuart Gold, MD, and Don Rosenstein, MD.
“So much credit goes to UNC Lineberger,” Steiner said. “When we first approached Dr. Gold and Dr. Rosenstein, they really embraced the idea from the beginning — that there was a lot that could be done to better support this population of patients. They were just excited to be able to figure this out with us and really open and committed to making things better.”
“Shelley, Don and Stuart have been huge advocates and great thought partners and planners with us,” Lux said. “We’re really lucky to have them in the leadership roles that they’re in.”
“That culture of support has been critical,” Smitherman said. “That got Lauren off to such a solid start that has continued to grow over the past five years.”
An eye toward the future, staying true to Sophie
As the AYA program approaches its five-year anniversary, Lux and Smitherman feel they are moving on from the start-up phase to becoming a larger organization. A process that has felt like “building the plane as we fly it” at times has now led to new services such as the development of an AYA advisory council, which allows patients to speak directly about their needs, as well as a survivorship clinic that provides support after treatments have ended.
“I think we’d really like to refine what we do and make it more efficient and effective,” Lux said. “Close to 500 new 13- to 39-year-olds are diagnosed and treated at UNC every year, so that’s a lot of people to try and meet. Trying to figure out how best to do that is something we’re really interested in.”
Expanding the program beyond Chapel Hill is also a priority and has become even more critical due to restrictions caused by the COVID-19 pandemic. That means offering support not only to patients across the state, but also helping educate providers who will be caring for them.
“It all goes back to what the patients are telling us they need through this process to maintain as much of their lives as possible,” Smitherman said.
Ultimately, the drive forward for the program persists as it always has from the spark provided by Sophie and the Steiner family.
“Niklaus and Lucy are one in a million, one in 10 million,” Lux said. “They are so smart and thoughtful, and the community that they’ve built is because of who they are, and who Sophie was, and who their daughters Elsa and Annabel are.
“They have taken what is arguably the hardest thing anyone could ever deal with and turned it into something incredible. They put so much trust and faith in us, and that’s a huge gift, and it’s really special. We try to honor that.”