When Niklaus and Lucy Steiner’s 14-year-old daughter, Sophie, underwent treatment for germ-cell cancer at UNC Hospitals, they discovered a system that, despite the best intentions, was woefully unprepared to meet the needs of a teenage patient. After Sophie’s death two years ago, they formed Be Loud! Sophie, a start-up fund that kept growing.

This weekend, a bunch of bands converge on Cat’s Cradle for a weekend of fun and music that will help support the organization that bears Sophie’s name. We spoke with the Steiners about the group’s work, why it’s going to stay locally focused and how Triangle music provides its soundtrack.

INDY: You were surprised to find that even an excellent children’s hospital is not set up to deal with young people with cancer.

Lucy Steiner: As you can imagine, children’s hospitals are really oriented toward children. At UNC, you’re greeted by a preschool playroom—that’s the first thing that you see. And it’s great for the siblings and little kids, but it immediately tells you: This is a place for little kids.

We were so panicked by Sophie’s health, I don’t know that we cared that much at that point. You’re in the hospital, and they want to entertain you to the extent that they can. And so the people who knock on the door, the creative arts people, the librarian—there’s a lot of things like that at Children’s Hospital. And all of those, without exception, did not feel to Sophie like they were for her.

It must have been beyond frustrating.

LS: It gave us a lot to do. It gave us a real mission and a real purpose. Every day, with a lot of Sophie’s decisions, it was like, “What are we gonna do today?” Is it going to be a visit from her friend?” The UNC field hockey team visited her on her birthday. We pulled together some extraordinary things that meant a lot to her, because they helped remind her that she wasn’t just a patient in a hospital, that she was a girl who played field hockey, she was a girl who wrote poetry and did photography.

We tried as much as we could to keep her sense of those things going in the hospital. There wasn’t anything in the hospital that was asking Sophie, “How can we help you with that?” So that’s essentially what we’re building, that program, so there will be somebody who says, “What are you interested in? What do you like to do, and how can I help you keep doing that thing?” And also, because it’s very boring to be in the hospital, introduce some experiences that they may not have thought they would love or be interested in, like a dance movement class with an Alvin Ailey dancer, which is something we did in the spring. It’s a combination of spontaneous, age-appropriate events and very tailored events that happen because of who you are and what you’re interested in.

So how do you get hospital staff to figure out what each kid wants?

LS: We started our work by talking to many different people in the hospital. We met a lot of people in the hospital while Sophie was there. We started with pediatric oncologists, the psychologist, the head of the children’s hospital, and the person who’s in charge of palliative care. In all those conversations, people would sort of light up and say, “You’re right, we really don’t do a lot for that age group.” But then we would leave these meetings and say, “What’s the next step? How big is this on their priority list?” We would feel sort of defeated by the fact that, despite their best intentions, what were they going to do?

We decided at some point a couple of months into that process that, if we weren’t able from the outside of the system to make enough change, we would hire a person for a position in the hospital and that would be their only job: to pull resources and build a program that fit the needs of this age group from inside the institution. Our funding would go to that person.

And that’s what you’re doing now?

LS: Yes. We’ve hired the person. We haven’t even announced it. We’re gonna announce it at the concert.

[jump]

Niklaus Steiner: I think it’s going to be transformative in that other hospitals will sooner or later pick up these kinds of positions. And I think in 10–20 years, it’ll be hard to believe that there was a time when this age group wasn’t dealt with differently. Sophie got the best possible care at UNC. They really did everything that was absolutely possible. So this is from a very good place that we all are acting. We just want to make it even better.

LS: One other thing to say is that this should happen for all teenagers in the hospitals for all different diseases, especially chronic things where they’re gonna have to be there a lot. What we’ve discovered is that oncology is a world in and of itself. The stakes are so high and the interventions are so extreme. It’s even more incumbent on us, then, in the realm of cancer and children and young people, to address the quality-of-life piece.

How soon did you sense that this advocacy work was something you wanted to pursue?

NS: Immediately after the memorial service when we asked people to donate money to a fund that Sophie had talked about, and we called it the Sophie Memorial Fund. We had the idea of just making some cash payments for families to visit [the hospital], be it gas or whatever. We thought we’d get a few thousand dollars.

Within a matter of weeks, we had $10,000. A few months later, we had $70,000. And we thought, wait, this could be more than just a fund. It was actually Annabel, our youngest daughter, who said this should really be a foundation with more long-term goals. We really latched onto that because, first of all, we’re not, unfortunately, solving rural poverty in eastern North Carolina. There’s just not enough gas cards that we can provide to do that. But like Lucy said, we thought about creating a systemic change that can occur here in Chapel Hill that then others could learn from.

People oftentimes ask us are we interested in scaling this up to other places, and I don’t think so. We really want to focus here at Chapel Hill because our story resonates so well here; this is our community. It has spread so well because we have such a strong community. Lucy and I have been here so long. This concert epitomizes why this has been so successful: it’s all grounded in music and community and connections. I know these guys from high school. Sophie loved the Pressure Boys. Sophie loved the fact that I’m still in touch with [Pressure Boys drummer] Rob Ladd and The Veldt and all these people. Somehow we’ve struck a chord here with the foundation.

The death of a child is often so devastating to a family and to a marriage. Has this endeavor helped you carry on?

LS: Our therapist would say yes. We talk about this all the time: At what point is this a healthy thing to do? A healthy way to manage grief? And at what point does it become too burdensome or difficult? We’ve tried to walk that line for our sake, but also for Elsa and Annabel’s sake. And if we thought that this was in any way too hard on any of the four of us, we wouldn’t do it. But it has been the contrary. Different families deal with grief differently. It helps us to talk about Sophie and to think about Sophie and to talk about Sophie out loud, and I think that may be a little unusual. But I also think it’s a way to keep her part of our life and keep her present. This has given us a way with parameters.

NS: And the parameter is: It’s got to be in the spirit of Sophie. So everything we do, we try to channel her quirkiness and personality. A lot of people have suggested we do a 5K race to raise money. Sophie hated to run. She would not at all have been into the “Sophie Steiner 5K” race down Franklin Street. She would have said, “Are you kidding me?” What’s perfect for us is a Cradle kind of show.

Girls Rock NC sounds like a perfect fit.

N&L [in unison]: She did it.

NS: And that was a turning point. She was maybe 10 or so when she did that. I had it in my mind that she was sort of quiet, reserved. She gets up there at The Pinhook in Durham, and when it’s her time, she was with two other girls, there were technical problems. And she just got up to the mic and said, “While we work out some technicalities, let me just do a ukulele solo.” I remember thinking, “This Girls Rock camp has brought something out in Sophie.” She was just always a surprise.