By Lamia P. Barakat, Ph.D.
When working with pediatric patients with cancer and their families, in an effort to support them in tapping their resiliencies and making meaning of the cancer experience, we often refer to cancer as “a coat”. At diagnosis, the cancer coat is brand new, with the tags still on. The coat is a bit stiff, uncomfortable, and does not yet feel like it belongs in your closet. During treatment, of course, patients and families must wear the cancer coat nearly every day during treatments, at clinic visits, when physical side effects (such as pain, fever, fatigue) intensify. Over time, the daily uniform gets broken in and it can become difficult to take it off regardless of the amount of distress and disruption that are associated with it. However, we encourage pediatric patients and families to take the coat off as much as possible to try on other clothes in their closet.
Time without the coat allows children and families distraction from the daily challenges of pediatric cancer to engage in everyday activities with friends and family. A break from cancer provides children and families with time to accomplish tasks, such as doing homework or paying bills, and time to have fun, laugh, and feel happiness again. Importantly, breaks from the coat give children an opportunity to engage in behaviors that support their continued development. This is particularly important for adolescents and young adults, who can so easily be derailed from important developmental tasks such as identity development, enhancing their social and romantic relationships, and identifying and achieving short- and long-term goals. Taking time off from the coat allows adolescents and young adults to recalibrate, get anchored, and move forward. For parents, it allows a chance for self-care and to focus on themselves, their partners, and the siblings.
When cancer treatment ends, and the cancer coat has become old and worn, pediatric patients and their families must consider what to do with the coat. Does it remain a daily part of their lives in which they continue to wear it every day? Does it go away permanently (i.e. throw it out in the garbage never to be revisited again)? Do families put the cancer coat in a closet? in the attic? under the bed? Certainly, follow-up visits require that the cancer coat be taken out, dusted off, and put back on occasionally in order to assess for medical late effects and ensure maintained health.
Yet, we encourage children and families to find a balance between wearing the coat every day and throwing it out because we’ve learned that childhood cancer can lead to growth--the view that positive changes in self, relationships, and future goals come from having had cancer. That is, children and families recognize positive changes in their self-definition, the importance of key relationships with friends and family members, and reconsideration of goals. When children and families consider the strengths in their coping, important relationships that buoyed them through cancer and treatment, and ways in which their goals are now shaped by the experience (such as wanting to give back in different ways), they feel more resilient and strong. Finding the right spot to store the coat of cancer rises from redefinition of the family and redefinition of the child’s identity to incorporate cancer and to acknowledge strengths and characteristics highlighted by the cancer experience.