Child Life Corner

with

Adina Levitan, CCLS

Supporting Children

Throughout the Cancer Journey

(Part 3: Survivorship)

In the world of oncology, there is one word that is used often, yet carries a different meaning for every child and family: *survivor*. Survivorship is a complex state of mind for oncology families. Am I a survivor because I have cancer and continue through treatment? Am I a survivor because I endured a painful biopsy, awful-tasting chemotherapy, or the loss of my hair? Am I a survivor because I rang the end-of-treatment bell? Is my child a survivor even if they didn’t survive? Who can claim this term—and when—carries significant weight and meaning for families.

The role of child life specialists in survivorship is also understood on an individual level for each child and family. For this article, we will explore survivorship as it relates to a child completing cancer treatment and ask, “What comes next?” This period—finishing treatment, removing central lines, and ending chemotherapy—can feel both heavy and freeing for families.

Children with cancer often spend extended time out of school due to the risk of infection while immunocompromised. As treatment comes to an end, families begin to think about returning to school. Child life specialists facilitate school reintegration through collaboration with teachers, classroom visits, and support during the child’s transition back into the classroom. This may include helping children develop and rehearse a script about their experience and how they would like it to be shared. Child life specialists uniquely understand the impact of hospitalization on a child’s development, self-esteem, and stamina. They can recommend ways to prepare classmates for the child’s return and, alongside the medical team, help create a plan that allows the child to ease back into the school routine.

When a child is diagnosed with cancer, the entire family is suddenly immersed in a new world, quickly embraced by a team of doctors, nurses, social workers, and child life specialists. Many families reflect that, over time, this team becomes like family. Holidays are shared, milestones are celebrated, and deeply personal moments unfold in patient rooms, exam rooms, and hospital hallways. As treatment ends, however, this level of day-to-day support shifts. Child life specialists place strong emphasis on building rapport and meaningful connections with patients and families to foster trust. These relationships often continue beyond treatment through invitations to special events, birthday cards, and ongoing connections to resources and support.

While a child may be considered a “cancer survivor,” medical care does not end abruptly. Survivorship often includes years of follow-up to monitor for recurrence and potential late effects of treatment. This can involve returning to the hospital for blood work, scans, and appointments. A child who has learned to cope with port access may find new challenges in adjusting to arm or finger sticks for blood draws. Child life specialists continue to support children through these transitions, helping them develop new coping strategies and plans.

Survivorship is a complex and evolving experience for oncology patients and their families. The end of treatment does not erase the months or years of hospitalization and medical interventions. Children may experience anxiety or medical traumatic stress during treatment and in the years that follow. Child life specialists provide therapeutic interventions, diagnosis education, coping strategies, and emotional support throughout treatment to help mitigate these effects. Even so, challenges can linger or reemerge over time. Child life specialists play a critical role in survivorship, continuing to support children and families as they navigate life beyond treatment.