On a Tuesday evening inside the children’s wing of the sprawling University of Texas MD Anderson Cancer Center campus at the Texas Medical Center, a group of teenagers were cracking jokes with one another, taking selfies—being typical teens.
After chowing down on plates of barbecue, they gathered in a semi-circle around a multimedia display and began to field questions from Dr. Karen Moody, a member of the Energy Balance Group at the hospital looking into how diet and exercise affect cancer treatment recovery.
She was hoping to get opinions from the group on activities cancer patients might like to try. After running down a list that included walking tours, scavenger hunts, weight training, yoga, and dance, she asked the assembled group for their thoughts.
The room was quiet at first, with a vague sense of teenage restlessness as the kids fidgeted in their seats. It didn’t last long, however, and soon, Moody was inundated with suggestions.
“What about soccer?”
“I played football in school.”
“There’s already basketball goals here.”
They then transitioned from the general ideas to detailed discussions of logistics: how to keep kids with IV poles safe by providing spotters to protect against wayward basketballs, and the use of softer balls to avoid injury. They considered rewards for participation in skills challenges—candy was a popular option—and places to actually play.
“I’m hearing a lot of sports themes,” Moody said. It was clear that if she wanted opinions, she was talking to the right group of kids.
But, this group was more than a gathering of randomly assembled adolescents coming up with arbitrary suggestions. These teens were speaking from experience. The group, about a dozen kids ages 13 to 18 years old, is MD Anderson’s Impact Council, a collection of teenage cancer patients and survivors who meet monthly to advise the hospital on how it can better care for their peers, and perhaps adults as well.
“We wanted to give the teenage group an opportunity to share their voice and lend their ideas,” says Daniel Smith, the manager of pediatric education and creative arts at the Children’s Cancer Hospital and leader of the Impact Council. “Teens are great in that they are going to tell you exactly what they think.”
Founded in 2012, Impact began as essentially a teen cancer support group. Kids gathered to share their experiences and be there for one another. For those facing a recent diagnosis, they answered questions and eased fears. But, more importantly, they gave a voice to those who often aren’t listened to in the same way as adults.
Impact became a de facto children’s focus group for the hospital, offering opinions designed to improve the experience for kids like them. MD Anderson has solicited ideas from the group on everything from education to recreational activities, even what they should wear during treatment. “The kids were able to test out options, and now they have more appropriate [pediatric] gowns,” Smith explains. That idea, in fact, was initiated by the kids themselves.
Beyond hospital finery, other suggestions have included the use of 3-D printing and Google Expeditions within the curriculum of MD Anderson’s fully accredited K–12 school program.
“It’s an incredibly motivated group,” Smith says of Impact. “Their experience at the hospital is very different. They realize they have really valuable insight, and they want to share that.”
One of those motivated teens is Mario Quezada. He joined Impact in late 2013, when he was undergoing treatment for acute lymphoblast leukemia. Even though he finished his treatment not long after joining Impact and is in remission, he kept coming back to share his experiences. “We have the ability to make the hospital a better place,” he says.
That includes preparing children for what they are about to face. It is difficult enough for adults to stare down a cancer diagnosis, but the lack of life experience for kids can make the process overwhelming and terrifying. The hospital, realizing it needed a better way to address these concerns, suggested a series of comic books to prepare pediatric patients for what came next, and approached the members of Impact to set the idea in motion.
Quezada and the other council members were enthusiastic about the idea, but he says they had one important stipulation: “We said, ‘OK, but it has to be our experience.’”
The result was five comic books covering the entire cancer journey from diagnosis and treatment to remission, relapse, and survivorship based on the real-life situations of Impact members, Quezada included. They offer honest, practical, real-world advice on what happens when you are sick, from dealing with what the books call “a lot of ‘omas’” to how the outside world perceives you.
Quezada described one of the numerous items he contributed succinctly: “Your favorite food will become your least favorite if you eat it during chemo.” Other topics include frustration with doctors who aren’t direct in their diagnoses, how you easily lose your train of thought due to the chemicals coursing through your veins, and even dealing with the fear faced by patients’ parents.
In the comic entitled Diagnosis, a circus master plays the game of Who Said It Worst, preparing readers for some of the off-color reactions they may receive when others learn about their disease. Comments such as “That’s not a bad cancer,” or “My uncle died of that” run aplenty, while prolonged staring and rumors of cancer cooties also make it to the final round. The next installment, Treatment, addresses the looming elephant in the room, while in Remission, that elephant is portrayed as a superhero, giving tips on how hair will grow back and physical activities can resume. Ultimately, the elephant explains what it feels like for one’s cancer to be inactive, to no longer have to fight back: “It’s like you finally get to don the superhero’s true identity. You don’t have to be brave, or tough, or strong, or anything. You just get to be.”
Before their sports discussion with Dr. Moody, a group of eight of the Impact members got their first look at the printed versions of three installments of the comic books. Book four was heading to the printer, and the rough draft of the text and illustrations of the final comic would be read and reviewed by the group later that night. Coming from the world’s leading cancer care provider, these publications aren’t just any old comic books. With the help of professional writers and artists—including several who have worked with both Marvel and DC Comics on popular series like Black Panther, X-Men, and Green Lantern—they are as realistic looking as any collectible you’d find at a store or Comic-Con.
“I didn’t know they would look this good,” Quezada said as he leafed through the pages. “They look amazing.”
For Smith, he knows just how valuable wholly unique resources like these comic books can be. “This kind of content wasn’t out there, and [these kids] wished it had been when they walked in on day one with their diagnosis,” he says. “You wouldn’t get that from a leukemia handout with bullet points.”
The same can be said for Dr. Moody, who wouldn’t have been able to learn what activities pediatric cancer patients are eager to participate in from a textbook. Competitive sports didn’t seem to even be on her team’s list when she walked into the meeting—ironic, considering Impact often meets in a basketball-themed room dedicated to Craig Sager, the NBA sideline announcer who was treated for cancer at the hospital. Without these teens, popular sports like baseball, soccer, and basketball might never have been considered for MD Anderson programming.
Still, Smith says the remarkable relationships the kids have built with each other are what truly stand out about Impact. “They really value what each other has gone through,” he says. “It’s a unique connection they have. I’m not sure I can imagine the sense of community that would develop elsewhere without the challenges these kids have faced and overcome.”
Quezada, who Smith believes has spent more time in Impact than anyone, noticed from the very first time he met with others in the group the importance of hearing the stories of others. “It makes you feel comfortable knowing there are people going through the same thing,” he says.
In fact, he has seen the entire trajectory of his life altered by not just facing down and living through leukemia, but by sharing his experiences with other patients his age. It’s something he intends to continue even after he graduates from high school and moves on from Impact. He plans to study medicine with the aim of working in pediatric oncology one day. His reasoning is as simple as it was when he began contributing to the comic books: “Since I spent much of my childhood in that hospital, I thought I could help out.”