Deborah Crom, a nurse practitioner in pediatric oncology at St. Jude Children’s Research Hospital in Memphis, Tenn., has spent many years working in the clinical setting with children who have survived a brain tumor.
But when she agreed to be one of the counselors last summer at Camp Mak-A-Dream in Montana, she gained a whole new perspective on these young people and what their lives are like.
Thirty young brain tumor survivors, ages 18 to 25, attended the week-long camp to learn more about managing the long-term effects of their treatment, connect with their peers and spend time outdoors and at play.
I learned that although I saw brain tumor survivors as vulnerable, socially deficient, and quiet, in this unique setting they emerged as resilient, thoughtful, and eloquent. I was amazed at the metamorphosis in their ability to share common experiences and convey complex emotions. Most impressive was their empathetic and enthusiastic support of each other.
Crom shares her lessons from summer camp in "I Think You Are Pretty; I Don’t Know Why Everyone Can’t See That," a reflection that appears in the latest issue of the Journal of Clinical Oncology.
Cancer – and indeed any major health challenge – can be life-altering for a child. This is especially the case for children with brain tumors, who must undergo aggressive therapy at a critical time during brain development. The long-term effects range from the cosmetic – facial nerve palsy, for instance – to short-term memory problems, cognitive deficits, communication disorders and more. As they reach adulthood, these young people also frequently face social limitations such as underemployment and loneliness. They’re more at risk of depression and anxiety as well.
The young survivors whom Crom met at summer camp often silently endured bullying from their school-aged peers. They longed to have others see them for who they are on the inside.
Crom saw that survivors were aware of their limitations yet insightful and supportive of each other. Young survivors learned more from each other than from the professional staff, she writes.
Survivors communicate with clarity, honesty, and empathy, thus benefitting from the experience of others as they develop a network of communication that transcends one week at camp. They reminded me that they can speak for themselves, and I have incorporated this lesson into my clinical practice.
Over the past 15 years, Camp Mak-A-Dream has hosted more than 4,500 children, teens and young adult cancer survivors for free week-long camping experiences, support and education. More information about the camp is here.