Imagine you’re flying in a private aircraft. Initially nervous, you relax into your comfy seat, as waiters offer food and drinks.
Then comes the announcement you knew would come eventually: You must jump out of the plane midair. You’re terrified at the prospect. Who will offer guidance for this leap? What awaits you on the ground? How can you prepare?
A similar sense of anxiety grips many patients and families as they prepare to return home after cancer therapy at St. Jude Children’s Research Hospital. For months or even years, St. Jude has provided housing, food and medical treatment. Their care team has held them close—anticipating their needs, calming their fears. Suddenly, the family faces the daunting task of returning home: a place where doctors, nurses, psychologists, physical therapists and pharmacists will no longer be accessible at a moment’s notice. Where bullies may lurk on the playground. Where the specter of a relapse is only a breath away.
Now there’s a parachute to ease those worries and provide patients and families with a soft landing. It’s called the St. Jude Transition Oncology Program, or TOP.
Support and resources:
Nurse Practitioner Sandra Jones was one of the TOP staff who helped guide Trevor Shinall and his family through the transition from hospital to home. Jones and the rest of the team worked together to connect the family with the resources they needed.
For two-and-a-half years, Trevor Shinall received treatment for acute lymphoblastic leukemia (ALL) at St. Jude. About 10 weeks before the fifth-grader completed therapy, his mom, Kelly, began to feel nervous.
“I was excited for him to be done, but it was also scary,” Kelly says. “Trevor was having some side effects. He was extremely thin. He had some drop foot, weakness in his legs and shaking in his hands. I thought, ‘What’s going to happen when we get home? We’re going to be done with this cancer, and he’ll be cured, but what about all this other stuff going on?’”
One day, a TOP appointment appeared on their schedule. During that meeting, Kelly and her husband, Terry, met Nurse Practitioner Sandra Jones, who explained how the TOP team would connect the family with resources.
“Sandra was a bright light, a comforting person,” Kelly says. “She answered my questions and gave me a lot of information about nutrition, since Trevor’s weight was so low.”
TOP’s rehabilitation coordinator ensured that Trevor had occupational therapy and physical therapy appointments awaiting him in his hometown. Today, Trevor is back in school and has joined the soccer team, returning to St. Jude every few months for checkups.
Pack the Parachute
Established in 2018, the TOP team helps patients and their families make the leap from hospital to home. Active treatment is complete; families visit the hospital periodically to ensure the patient remains cancer free.
“Just because they’re finished with therapy doesn’t mean it’s going to be smooth sailing,” says Emily Browne, DNP, RN, who directs TOP. “It’s exciting, because they’re done with this phase, but it can be unsettling. Children have to go back to school. Parents have to go back to work. They’ve got to figure out what their new normal is. We want to make sure they feel supported during that time.”
The TOP team includes nurse practitioners, psychologists, social workers, rehabilitation coordinators and school liaisons. The team also coordinates with a physician in the child’s primary clinic, offering an extra layer of support until patients move to the After Completion of Therapy (ACT) clinic. That move occurs once the child is at least five years from diagnosis and two years past treatment. In the ACT clinic, patients will learn to navigate the adult health care system and maximize their health as long-term survivors.
“If you think of the primary oncology teams as the active cancer specialists, and the ACT team as the long-term survivor specialists, then you can think of the TOP team as being specialists for that in-between time of transition and uncertainty,” Browne explains.
TOP staff regularly checks on patients, arrange for screenings and serve as the liaison with primary care providers and specialists. If a child is struggling in school, the TOP program works to address the issues as quickly as possible.
“If you can address those struggles early in the process, you can change everything for that child,” observes James R. Downing, MD, St. Jude president and CEO.
Browne acknowledges the program is one of few nationwide to focus on the early survivorship period.
“This is a groundbreaking program,” she says, “and we want to make it a model for the rest of the country.”
If you think of the primary oncology teams as the active cancer specialists, and the ACT team as the long-term survivor specialists, then you can think of the TOP team as being specialists for that in-between time of transition and uncertainty.
As an ALL survivor who was diagnosed during high school, Browne can empathize with patients facing the end of therapy.
“For me, those first couple years off therapy were rough,” she recalls. “There was a lot of anxiety over every little cold and sinus infection. I’d think, ‘Oh my gosh, what if I relapse?’ I was no longer getting medicine all the time or having my labs checked—and yet, I was expected to bounce right back into life. It was a very confusing time for me.”
Browne acknowledges that every family has its challenges and struggles.
“I’ve had some families tell me, ‘Gosh, this was harder than the diagnosis,’ and other families who jump right back into life and school easily,” she says.
The TOP staff tailors their offerings to each family’s needs. Preparations begin well in advance of the return home, so that the patient and family have ample time to begin the transition and receive the support they need.
“We want them to be the happiest and healthiest they can be,” Browne says.
Pull the Cord
April Parker and her husband, Ryne, spend their days chasing 16-month-old Turner, an active toddler who recently completed therapy for neuroblastoma, a cancer of nerve tissue. April says the TOP program’s social worker put her in touch with a mentor—a parent who could offer practical suggestions and a listening ear.
“I had so much anxiety and fear as Turner came off treatment,” April admits. “When you’re at St. Jude, nurses and doctors are available 24/7, if you need them. My mentor was able to help calm my fears and reassure me that leaving the hospital wasn’t a bad thing. She gave me lots of encouragement and advice. She also helped me connect back to the real world, after being at St. Jude for so long.”
April says the TOP program helped smooth the way for their return home. Browne set up a psychology appointment to ensure Turner was on track with social and cognitive skills. She also sent Turner’s hometown pediatrician a detailed summary of the child’s treatment, as well as follow-up recommendations and contact information. Browne continues to call the family about once a month to find out if any issues require attention.
“It’s reassuring to know that we can reach out to her if we have questions,” April says, “and if there’s an immediate need she’ll help find someone in our area to meet it. This program is great because it helps me feel like we’re supported even when our St. Jude team doesn’t have their eyes on us every day.”
Time for TOP:
Now that 8-year-old Alana Davis has completed treatment for Hodgkin lymphoma, she has more free time to spend outside. The new Transition Oncology Program (TOP) is designed for children like Alana. Emily Browne, DNP, director of TOP, understands the challenges of moving from hospital to home. “It can be unsettling,” Browne says. “Children have to go back to school. Parents have to go back to work. They’ve got to figure out what their new normal is. We want to make sure they feel supported during that time.”
From Promise, Winter 2020