Pediatric survivorship program provides support after treatment
Penn State Hershey program is supported by Four Diamonds.
Each year, as the rate of children cured from pediatric cancers increases, so does the need for ongoing care of the young survivors.
Six years ago, Penn State Hershey Children’s Hospital started a survivorship clinic to educate children and young adults who have completed their cancer treatments about the therapy they received and possible late-arriving side effects of it.
“Most of the time, therapy-related complications happen several years after therapy is finished, when they are young adults,” said Dr. Smita Dandekar, head of the program. That’s why children are invited to the program at least five years after their original diagnosis, and at least two years after they have completed their treatments.
The program follows young patients until they are 10 years off therapy, or until they turn 18, whichever comes later.
James Dreer is one of the patients in the program. Dreer, 22, of Willow Street, Lancaster County, was diagnosed with acute lymphoblastic leukemia when he was 11. Although he completed his treatment elsewhere during his father’s military career, the family decided that Penn State Hershey was the best place for him to be followed once they returned to Lancaster.
During a patient’s first visit to the clinic, information is received about chemotherapy, radiation treatment and surgeries encountered as part of therapy. The possible side effects that could surface as a result of those therapies are explained, and the screenings that should be completed to watch for those effects are discussed.
“Our goal is to empower and educate them,” Dr. Dandekar said.
Nurse coordinator Michelle Marino prepares a treatment summary based on the individual patient’s history, as well as a roadmap of screenings so everything is in one place.
“By the time they come to us, the families have forgotten the details of the therapy and often can’t recall all the possible therapy related late effects that were told to them at the time of starting therapy,” Dr. Dandekar said.
That way, if a child goes off to college and has chest pain or finds himself out of breath, he knows it could be a result of chest radiation or a chemotherapy drug called doxorubicin that he received during treatment.
Once a year, Dreer visits the survivorship clinic to learn about things he may experience as a result of his cancer journey that others his age may not.
“Some of the chemo I had made it a bit difficult for me to concentrate and it took me a little longer to get back to normal,” he said. “They also talked about my fertility in the long run, which was something I might not have thought about.”
Mostly, it is just nice to have an opportunity to check in and see how things are going, he said.
Although children diagnosed in their teenage years may be followed well into their 20s, Dr. Dandekar said it’s important that they eventually transition to an adult internist who is trained to look for and manage problems such as diabetes, hypertension and heart disease.
Katherine Stenman, the program social worker, said although survivors may experience late effects from treatment, general wellness education is also key.
She talks with her young patients about the importance of exercise and a healthy diet and avoiding risky behaviors.
Being proactive and preventing problems is the name of the game.
“If they are having heart issues, we want to get them to a cardiologist to monitor that more closely and prevent further damage,” she said.
Her role is also to assess patients for non-medical late effects – issues with school, emotional problems, depression, anxiety, possible survivor’s guilt or other things that may surface unexpectedly.
The program is supported by Four Diamonds, which provides money for the nurse coordinator position, as well as partial funding for the clinic physician and social worker.
“With 80 percent of kids surviving a childhood cancer diagnosis, every year it becomes more important to offer services to the survivors,” Stenman said. “They have their own unique needs.”
Stenman said funds raised for Four Diamonds through the annual Penn State IFC/Panhellenic Dance Marathon – THON — and other events are what make the program possible. This year, THON raised $9,770,332 for the foundation, whose mission is to conquer childhood cancer.
“Without these services, things could be missed or overlooked,” she said. “How to survive and thrive as a survivor — and take ownership of what it means to be a survivor – that is part of the package now.”
THON welcomes survivors to participate in the annual activities to help inspire and support others who have been through or are traveling similar journeys.
Dreer was a co-founder of a mini-THON at his alma mater, Lancaster Catholic, and is now finishing his senior year at Millersville University. He is interviewing at medical schools because he wants to go to school for pediatric oncology.
“Being followed like that has given me a nice respect for what the medical profession is all about,” he said.
- Jennifer Vogelsong