Today – for the first time – the majority of children diagnosed with cancer can expect to be long-term survivors. However, survivorship comes with the shadow of other health risks, and it takes careful monitoring to ensure that every patient who beats cancer continues to not only survive, but thrive.
Committed to survivorship education
Enter the Survivorship Clinic at Levine Children’s Hospital. Under the leadership of Jennifer Pope, MD, the team educates cancer survivors about their past medical history while guiding them to live their best life. “I’m so proud that once pediatric patients are done with therapy, we don’t just leave them. We are committed to them until they become adults,” says Dr. Pope. The survivorship team is multidisciplinary; it consists of a doctor, a nurse practitioner, a psychologist, dietitian, social worker and child life specialists. The clinic takes place every Wednesday morning, with each cancer survivor coming in once a year.
Right now, there are 200 active survivors in the program. “We focus on the overall wellness of the child,” says Dr. Pope. “That includes everything from their emotional health to their physical health – we shift focus to their overall wellbeing instead of the cancer.” Patients in the program see all the team members during each visit. They’re even given homework, including changing their diet by trying new, healthy foods and seeking career guidance.
“We encourage patients to take the reins back, as we take control during cancer. We want our patients, especially the older ones, to be knowledgeable and involved,” says Dr. Pope.
The survivorship clinic reinforces the fact that a cancer survivor can do nearly everything their friends or siblings can do - they just need a little help. And while the patients are no longer sick, the cancer doesn’t just dissipate – it leaves a lasting impression on their overall health and their lives. “It is really hard for our survivors to transition back into their normal routine because they have been through a life-altering experience,” says Dr. Pope. “We make it a point to address this important transition, and that includes discussing changes in their feelings and how they relate to their friends and peers.”
"Once you're done with cancer, cancer is not done with you"
One of those survivors is Katy Thomas, who discovered she had a tumor in her sinuses nine years ago during her senior year of college after experiencing headaches, fatigue, stress and a loss of smell. The tumor turned out to be Ewing’s Sarcoma – a tumor of the bone or soft tissue around the bone. Once this diagnosis came in, Thomas' doctors referred her to a pediatric oncologist at Levine Children’s Hospital, because Ewing's Sarcoma is a children's cancer and Thomas would receive the best treatment through the pediatrics team.
“This was the best thing for me in the worst situation,” she says. “[Levine’s] was so amazing and supportive! It was a little weird being with children and toddlers – I was in a different world – but it ended up helping me more, because I was just out of college and still a child myself.”
As soon as Thomas was cancer-free, she entered the survivorship program under Dr. Pope. “Once you are done with cancer, cancer is not done with you,” Thomas says. “The chemo after-effects are still affecting your body … it makes you so scared. Every time something was worrying me I would Google it and freak myself out. Thanks to the survivorship clinic, I understand that what I am going through is normal. The anxiety, the health side of things, the weird things that my peers are not going through – having that support system is HUGE for me.”
Learn more about the pediatric oncology program at Levine Children’s Hospital.
