Teens with cancer find an unexpected source of strength: each other
Program at Lucile Packard Children’s Hospital encourages youths to turn to each other for support and advice
BY KATHARINE MILLER
Two boys shared a room, but they’d never talked. They were usually too sick. Until one night they ventured out of their room on the Lucile Packard Children’s Hospital cancer ward to join a group called “Connections.” There, the two found plenty to chat about. They compared the drugs they were taking and shared “tricks” for overcoming chemotherapy’s side effects. They became friends.
That’s exactly what the group’s founder hoped for. John Binkley has a master’s degree in education and many years of experience working with children in trauma. He’s also a hospital volunteer. “We’re trying to help teens with cancer connect with each other,” he said. “We want to create a space where these kids can take control of the conversation without adults imposing their own agenda.”
Binkley started Connections last January with the support of Gary Dahl, MD, professor of pediatrics and a physician in the hospital's Division of Hematology/Oncology and Bone Marrow Transplantation. “Cancer is hard for anybody, but in particular when you’re coming of age to have the rug pulled out from under your feet so that everything is controlled by your disease and your treatment, it’s a difficult situation,” Dahl said. The hospital has a network of social workers, play therapists and psychologists to help youths deal with their cancer, but that didn’t provide a social setting for teens with cancer to just meet and talk.
“It was John’s idea that cancer is similar to other traumas that he has seen,” Dahl said. “He wanted to see what would happen if he got the teenagers to communicate. He gets things going and then steps back like he’s not there, to just let things happen.”
Binkley recruited a group of Stanford undergraduates to help him out. Every Tuesday and Thursday evening for an hour, he and one student meet with the patients in a conference room on the hospital’s cancer ward. Nurse practitioner Pam Simon and the cancer ward nurses are essential to the program’s success. They recruit the patients, telling them that Connections is a place where teens meet to talk about whatever they want.
“No one is required to come,” Binkley said, “but a nurse will shove them in, often attached to two IV towers. If they come once, they almost always come back.”
Thus far, 25 different teenagers have participated in the 77 sessions. “It’s not group therapy or medical treatment,” Binkley said. “Success is when the kids come in and ignore us.”
Kathy Gordon, 19, spent four months on the cancer ward in 2004 before being discharged. She attended Connections every chance she could get.
“It made me feel less alone because I got to meet other kids who were going through the same thing,” Gordon said. “And it was an escape from the everyday doldrums of nurses coming in to check your IV, or people asking if they can get you something.”
Gordon also found that it was easy to talk with the other teens in the group. “I could release some pent-up energy about what I was feeling to people who understood it,” she said.
When talking to people who haven’t had cancer, Gordon has to explain things. “Even with my best friends, I have to explain that the nausea from chemotherapy is 10 times worse than the flu.”
But in Connections, that wasn’t necessary. “They understood about feeling out of the loop with your friends,” she said. “And when we’d joke about all the drugs we were on, we’d all laugh about it because we’d all been through the same thing.”
The group doesn’t always discuss their cancer or their treatment. Movies, school, friends, family, hobbies are all open topics. One time, Gordon said, the meeting became a gripe session about hospital food and uncomfortable beds. “It was a relief to get out and talk about everything that was bugging us,” she said.
But the conversation does become heavy. “It helped me to talk about things you don’t want to discuss with parents or family,” Gordon added. “The whole ‘what if’ factor—even if everything is going well, what if it doesn’t work this time.”
Stephanie Nguyen, a Stanford pre-med student and the program’s undergraduate coordinator, has been helping Binkley at Connections every other week since the program launched last January. She likes seeing the human side of medicine and seeing the patients improve.
“The patients grow more comfortable talking about themselves and their treatment,” Nguyen said. “I notice changes between their first session and the last. They start out quite reserved. Later on, they are the ones initiating the conversations.”
Gordon also thinks that Connections helps patients come out of their shells. “It made them realize it wasn’t the end of the world,” she said. “It’s just a different path than they expected.”
Parents really appreciate the group as well, Gordon noted.
“It’s helpful to parents who see their kids come back from the group with a little bit of weight lifted off their shoulders,” she explained. “I always left Connections with a smile.” mcr