Childhood cancer survivors get lifelong support from dedicated healthcare team
People who survive childhood cancer have a lot to celebrate. Suddenly, going back to school or dreaming of starting a career or a family seems possible again. As these kids go on with their lives, though, they may face some health or psychosocial challenges. The M Health Fairview team from the Childhood Cancer/Bone Marrow Transplant Survivor Program is there for them.
"We do our best to support patients and families through each step of their medical care,” said Vanessa Hausman, MSW, LICSW, a social worker from the Childhood Cancer/BMT Program. “I've heard from families over the years that the survivorship period of time is actually scarier for them than it was at the hospital when they went through treatment, because now they're back at home. Caregivers or parents feel solely responsible when they don’t have frequent nursing visits or check-ins with physicians. Our clinic offers continued monitoring and care with a dedicated team assessing all aspects of health and wellbeing.
Karim Thomas Sadak, MD, MPH, MSE, a pediatric hematologist/oncologist, is passionate about supporting pediatric cancer survivors and helping them transition to continued survivorship care as adults. Sadak, the director of the Childhood Cancer/BMT Survivor Program and an Associate Professor at the University of Minnesota Medical School, and his team typically see pediatric cancer survivors for follow-up visits once a year, though survivors and their families are encouraged to reach out anytime with questions or concerns.
The follow-up visits are opportunities to provide care and screen for late effects from the therapies that cured the kids’ cancer. Many long-term side effects can be treated or controlled with early diagnosis. Sometimes issues don’t surface for many years, which is where the term late effects comes from.
“We watch for something like heart failure decades after chemotherapy, or neurocognitive issues from radiation, or how a bone marrow transplant puts them at risk for things like obesity or high blood pressure,” Sadak said. “We have the clinical team that can either screen for these long-term complications or detect them early before they become more serious. Then we offer health promotion to try to help prevent them.”
Hausman said one late-term effect that isn't widely known is dental care. Oral health can drastically change after receiving chemotherapy or radiation, so she assists families who need dental care.
Help for psychosocial needs
Since navigating cancer treatment and late effects can be stressful for the whole family, Hausman also talks with families about what non-medical support they need. She can help with resources for mental healthcare, financial or insurance concerns, and school advocacy.
“My role as the clinical social worker is to meet with new families, assess their needs, provide support, and make sure they feel well-connected,” Hausman said. Hausman is also available as questions or concerns arise.
Many kids experience a developmental lag when they go through cancer treatment. The survivor support team can help survivors develop the social skills they missed, such as social connectedness and the ability to make and maintain peer relationships. Hausman also advocates for school resources since kids who have undergone a bone marrow transplant, radiation, chemotherapy or other treatments might have neurological issues. School administrators don’t always know or understand what the child is experiencing.
Survivors may reintegrate back into school while appearing healed after treatment. However, students may experience changes in cognition, memory, and processing speed. Hausman said, “I talk with parents/ caregivers about ensuring their students educational needs are met after treatment. Although a child may continue to be bright, it may be that they are working harder than classmates to maintain this baseline. I provide guidance in how students can access appropriate school accommodations to avoid potential stressors or barriers to academic success.
The need for help doesn’t always surface right away. Sometimes it comes up years later or during a period of big change, such as when a child starts middle school or graduates from high school. But patients and their families know they can always reach out to the team in the Childhood Cancer/BMT Survivor Program for all kinds of support and to get connected to survivorship program resources for fertility questions, nutrition therapy, and financial questions.
Transitioning to adult care
Some child cancer survivors might not remember getting treatment if they were young, but survivorship care is lifelong.
“The parent or caregiver never forgets what that child of theirs went through,” Sadak said. “They want to take every opportunity to make sure nothing else that severe happens or that we’re at least prepared for it.”
That’s why Sadak and team work with adolescent patients to transition healthcare responsibility from their parent or caregiver to the patient themselves. At M Health Fairview, that transition comes with familiar faces since the cancer survivorship team cares for patients that are both pediatric- and adult-age.
“It’s just a matter of are we seeing you in this location or that?” said Emily Stene, RN, BSN, the Childhood Cancer Survivor/BMT nurse and a researcher at the University of Minnesota Medical School.
The clinic for childhood cancer survivors that are now adults, located at the M Health Fairview Clinics and Surgery Center in Minneapolis, offers access to several specialty clinics that aren’t available at M Health Fairview Masonic Children’s Hospital. Most importantly, the adult care setting supports young-adult patients taking the lead on their care (in a developmentally appropriate way), as opposed to their parents being in charge.
As survivors grow and move into adult clinics — or different health systems or to new jobs — they need to know how to access information about their childhood cancer treatments and the related risks, what it means for their future health, and what tests and screenings they need.
This information is available in MyChart, but Sadak, Stene, and Hausman also encourage survivors to schedule a visit with their care team yearly — or more often if they have a concern.
Letting kids be kids at summer camp
While patients are still kids, the care team wants them to have every possible childhood experience, like going to summer camp.
Funded by the Children’s Cancer Research Fund, Camp Norden is open to kids who have had or currently have cancer. M Health Fairview healthcare workers, including Sadak and Stene, help care for kids’ medical needs while they’re away from home at Camp as part of the medical staff.
“Kids miss so much while they’re going through treatment,” Sadak said. “This is a time to relax, have fun, and do what they should have gotten to do while they were going through their treatment or immediately after.”
Camp is free and open to kids between ages 8 and 17. Learn more.
