Like a stone tossed into still waters, a simple suggestion has created ripples in the lives of five young men undergoing cancer treatment at St. Jude Children’s Research Hospital.
It all began with a conversation led by Amanda Brody, one of the hospital’s 18 child life specialists.
“I met Amanda after I had limb-sparing surgery on my leg,” recalls 22-year-old Seth Bombet. “She suggested that I talk with a new patient who was about to have a similar surgery.”
In January 2016, Seth, a long-distance runner and premed student, had learned his lingering leg pain was caused by osteosarcoma, a bone tumor diagnosed in about 400 U.S. children and teens annually. Deferring entry into medical school, Seth traveled to St. Jude for treatment, which would include surgery and chemotherapy.
In April, he underwent a limb-sparing operation. In this alternative to amputation, surgeons remove the tumor and diseased tissue and insert a prosthetic bone or graft.
Soon after Seth’s arrival at St. Jude, 17-year-old Reese Brown received the same diagnosis. The young baseball player also required a limb-sparing operation. Brody encouraged Reese to meet with Seth.
“I can tell you all I know; your doctors can tell you all they know,” Brody explained. “But learning about the surgery from someone who has had it is completely different.”
Coping with challenges
As a child life specialist, Brody helps St. Jude patients cope with health care challenges. She and her colleagues offer explanations and education about medical procedures. They provide distractions during inpatient stays. They also help patients create legacy projects and other avenues for self-expression.
In her work with teens, Brody offers a listening ear, emotional support and encouragement. And she facilitates valuable peer interactions among patients like Seth and Reese.
Brody and another child life specialist arranged the initial meeting with the patients and their parents.
“The families had never met before,” Brody recalls. “As Reese asked questions and Seth described what surgery would be like, I could see the wheels turning in Reese’s mind. It’s like he was thinking, ‘It’s OK for me to ask these questions, and this guy knows what I’m talking about.’”
Meanwhile, the parents were having their own discussion, with questions asked and answered.
“The main message from both Seth and his dad was, ‘You’re going to get through this. We were worried, too, but it was fine,’” Brody says.
“I think it gave Reese’s family hope in a time where they had no idea what to expect,” she continues. “That’s what I love about my role. While they’re here, I can help them through, but the other families can help, as well.”
Turning no into yes
At first, he said no.
“I’m not good at meeting new people and talking to people,” Reese responded, when Brody proposed that he, in turn, share his insights with new patients.
“You’ve been through this, and they need your help,” she replied.
Reese reluctantly agreed, and he says the experience has helped him mature.
“Amanda’s changed me. I was shy, but she has pushed me to be the best ‘me’ that I can be,” he says. “She pushes kids out of their comfort zones and roots them on and believes in them.
“It’s gotten easier and easier for me to help other kids,” he continues. “It’s an awesome feeling to be able to help somebody, based on what I’ve been through.”
The group grows
When 17-year-old boxer and rugby player Ellason Flagg III arrived at St. Jude, Brody ushered him into the impromptu group.
“We were new to this, and we didn’t know what to expect,” Ellason’s dad says. “By talking with Seth, Reese and their parents, we felt more comfortable. It was good to hear from somebody who had been through it already, because we were kind of scared.”
Ellason’s main concerns centered around pain and the possibility of losing his leg. The three guys discussed sports and school and other interests.
“I told Ellason that every surgery is different,” Reese says. “I said, ‘Yours is going to be different than mine, and mine is going to be different than Seth’s, but you’ve got the best doctors you could possibly have. The surgery is easy; it’s the physical therapy you’re going to have to get through.’”
Ellason was reassured by the interaction and the information.
“They told me it was going to be all right and that I had to stay strong both mentally and physically,” Ellason recalls.
In addition to introducing Ellason to other osteosarcoma patients, Brody encouraged him to express himself by producing a painting for the hospital’s Teen Art Show.
“Amanda makes me laugh, makes me feel better, makes me smile,” Ellason says.
A new chapter
Unlike most cancer patients, 15-year-old Jalen Nash relied on St. Jude for medical care long before his osteosarcoma diagnosis. He was an active patient in the hospital’s sickle cell clinic when his leg began to hurt. Initially, he and his caregivers assumed he was experiencing a pain crisis related to sickle cell disease. When tests revealed bone cancer, he began to prepare for a limb-sparing operation. Part of that preparation involved meeting with Brody and Reese.
“In the beginning you’re really scared,” Jalen admits. “Reese told me the surgery and the pain wouldn’t be as bad as I thought they would. He said I shouldn’t worry too much.”
Reese says he could empathize with Jalen.
“I could tell we’re alike,” Reese recalls, “anxious and stressing out. I told him, ‘It’s just a surgery. It’s going to change your life, but it’s not the hardest thing you’re going to go through.’”
After the operation, Jalen agreed.
“When I got out, I saw Reese, and I said, ‘It wasn’t that bad; it was better than I could have imagined.’”
Strength forged through friendship
High school junior Tyler Nelson assumed his knee pain originated during a soccer game—until a scan revealed bone cancer. Soon after his arrival at St. Jude, Tyler met Brody, who was to be his child life specialist.
“Amanda made the transition easier. She made sure I knew what was going to happen before scans or biopsy or surgery. She helped me ease into this situation,” he says.
Before Tyler’s surgery, Brody also introduced him to other teens with osteosarcoma.
“I mostly asked them about pain,” Tyler says. “I also asked them about recovery time, and our parents talked about what to expect. Everybody got along great. It was reassuring to see somebody who’s on the other side of the surgery.
“They’re all strong dudes,” he continues. “We’ve all got to be strong to put up with this.”
Tyler says he is ready to dispense advice to future patients who will undergo limb-sparing surgery.
“I’ll tell them to do their PT, listen to their doctors and take it easy after surgery. Don’t get cocky and do too much too soon. I’ll also tell them not to worry—everything will get better.”
Perspective from experience
Now all five young men have entered a new phase of treatment, supporting one another through high-dose chemotherapy. When Seth’s disease failed to respond to his initial chemotherapy regimen, the aspiring medical student faced two lung surgeries, as well as a new treatment regimen.
“After his first lung surgery, I visited Seth in the ICU, texted him and talked to him to make sure he was OK,” Reese says. “We always keep up with each other.”
Recently, Jalen was scheduled for an operation to remove some lung nodules. Seth met with him beforehand to demystify the upcoming surgery and to provide the perspective that comes from experience.
“I believe it’s no coincidence that all of these guys came here at the same time,” Brody says. “I’ve watched the bond develop between them, and I know how important that is. Each of them has the same diagnosis, but their paths are different. The connection they have helps them support each other.”
From Promise, Winter 2017