Sophie Steiner was not just a cancer patient.
She was also a dancer. She loved music, too, and her favorite band was the Avett Brothers. She could be brutally honest, her dad recalled: “If you came home with a new shirt and you said, ‘Sophie, what do you think of my shirt?’, you have to be ready for her to say, ‘That’s really hideous. I can’t believe you bought it.’ ”
She loved the TV show “How I Met Your Mother,” and she hated running. But she was also a cancer patient, one who died in 2013. She was 15.
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One of the lessons Sophie’s dad took from his daughter’s life guides his work with the Be Loud! Sophie Foundation, the nonprofit that bears her name.
“Just be authentic,” Niklaus Steiner said. “Be real.”
And meet young cancer patients as people, not as widgets in a system.
Appropriately, Be Loud! addresses patients aged 13-26 as the individuals they are. The program is based in Chapel Hill, the town Sophie lived in and loved, and focused squarely on UNC Hospitals, where she was treated. Teens and twenty-somethings, Niklaus explained, don’t necessarily fit in the children’s hospital or the adult hospital: In the former, programs are more oriented toward little kids; in the latter, they’re surrounded by people much older than they are. Be Loud! offers support, programs and resources to a group that’s not quite kids, but not quite adults yet, either.
Improving outcomes can be as simple as getting to know them.
“It’s important to me to listen to them because they’re the ones who are experiencing this,” said Lauren Lux, Be Loud!’s adolescent and young adults (AYA) program director.
Like Niklaus, Lux has firsthand experience with a loved one having cancer. Her mother was first diagnosed at 21 and was sick multiple times. With this background, Lux has always been comfortable in hospital settings. And she’s seen the difference that can be made when health providers genuinely care.
This can be an added challenge with the AYA group. At this age, Niklaus explained, young people are just beginning to discover their identity. They’re just beginning to gain some independence, he explained, and all that is immediately stripped away by a cancer diagnosis. What health providers can do, though, is acknowledge their interests and identities.
“If you’ve got a 15-year-old dancer, do a rec therapy exercise that reflects that interest, which is going to be very different from an exercise you’re going to do with a 25-year-old wrestler,” he said.
When you’re 20, you’re supposed to be able to do anything. So Be Loud! gives patients cameras or opportunities to blog – one patient, for instance, blogs about her love of espresso. If a patient is a guitarist, say, they’ll bring in a volunteer who also plays. And sometimes these patients simply go on adventures, just like anyone that age would.
Appropriately, Lux meets AYA patients on their terms. She doesn’t set traditional appointments – teens and young adults, Niklaus said, won’t show up. Rather, she comes to them at times that fit their schedule. And she gives patients her cell phone number, inviting them to call or text her whenever they need to. They’re very respectful of this, Lux said, and don’t tend to reach out at night or over the weekend.
“Lauren is so authentic,” Niklaus said. “She gets this age group so well.”
There’s more to this than simply catering to teenagers and young adults’ developmental idiosyncrasies, though; this approach, Lux and Niklaus believe, can improve their chances. With adults and children, Niklaus explained, patient outcomes have improved over the past few years, but they have not for the age group Be Loud! serves. First, he said, teens and young adults tend to get tougher kinds of cancer. Adding to the challenge is there’s not a lot of research on this demographic. They are tough to get into or keep in clinical trials, and Lux sometimes encounters noncompliance issues one would be less likely to find in older adults or children.
“She had a patient not too long ago that confessed to her that he didn’t know how to swallow pills and was hiding them under his pillow,” Niklaus said. “This was something he would never tell the nurses or the doctors, because he was embarrassed, but he would tell her.”
A lot of this trust comes from simply letting teenagers and young adults be themselves. The last thing Sophie wanted to talk about with someone like Lux was her cancer, Niklaus recalled – she talked enough about that with doctors and nurses. So part of Lux’s mission is to keep patients connected to life outside the hospital. Little kids tend to have their parents nearby, while older adults have networks of family members, colleagues and friends who visit in the hospital.
So Be Loud! does its part to fill that gap for teens and young adults. When you’re 20, Lux explained, you’re supposed to be able to do anything. So Be Loud! gives AYA patient cameras or opportunities to blog – one patient, for instance, blogs about her love of espresso. If a patient is a guitarist, say, they’ll bring in a volunteer who also plays. And sometimes these patients simply go on adventures, just like anyone that age would.
“(Lux) had a fabulous weekend in Pilot Mountain teaching five young patients about rock climbing,” Niklaus said. “Not once did they talk about cancer.”
Be Loud! Sophie Foundation
406 Longleaf Drive
Chapel Hill, NC 27517
Contact: Lucy Steiner, 919-967-0943
Description: Supports adolescent and young adult cancer patients and their families at UNC Hospitals.
Donations needed: Direct funding for programs; gift cards to Starbucks, iTunes and local restaurants.
$10 would buy: Gift card to iTunes or Starbucks.
$20 would buy: Gas card for family and friends to visit hospital.
$50 would buy: Programming on topics such as healthy cooking, expressive arts and college scholarship opportunities.