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Guest Blog: Navigating the Brain Tumor Journey as Part of a Community

Published on May 26, 2017 in Brain Tumor Information, In the Community

Guest Author: Nancy Cincotta, MSW, MPhil

Nancy Cincotta is the Psychosocial Director, Camp Sunshine* at Sebago Lake.

Regardless of where you are in life, a diagnosis of a brain tumor is daunting. You and your family may feel disconnected from the world you had previously been part of, and a new journey rapidly begins. Within the context of this new narrative, your connection to the world, how you approach it and how it approaches you, can change dramatically.

And, when your child has a brain tumor, it can be extremely helpful to connect to people who are on a similar path so that you can understand the steps ahead and learn how to access resources, support, and assistance.

Families in Camp Sunshine’s brain tumor community help and support each other in ways that can be remarkable. After meeting at Camp, families often stay connected physically, and virtually, around the country to celebrate good times and to share more complicated moments.

… Guiding and supporting each other through the worst of times and celebrating every little victory. Speaking each other’s language and teaching the new folks the ABCs of MRIs and a multitude of other medical procedures…staying in touch and cheering and crying together.

Attribution: Mother of a child with a brain tumor

The particularity of the emotional, intellectual, and existential components of the brain tumor experience reveal the journey to be one-of-a-kind. The seriousness of the situation, the urgency for care, and the impact of a brain tumor on the whole family present unique challenges. Coming together with others can make those challenges seem both less foreign, and less insurmountable. The shared voices of others facing the same issues often mitigates feelings of isolation, one of the strongest assailants that can accompany the brain tumor journey.

Campers in the pool

Environments such as Camp Sunshine, are places where families can return to, which enable a special kind of hope and comfort. It is comfort that comes from traveling this path together, no matter where it is taking you. The support is in the consistency and the availability of a group of people – children, teens and adults – all of whom understand, on some level, the challenges of living with a brain tumor – and that no one needs to face or endure the experience alone.

When life seems overwhelming, it can be easy to let go of joy, fun, and hope. The Camp environment can provide room for such emotions and may serve as the impetus for re-engaging those feelings, both in the Camp environment and at home. Communities of families are built, not born. Once established, they can become a family’s strongest support as parents, survivors and siblings enable each other. At Camp Sunshine this happens on all levels.

I know that I can handle this because of the kids in my club at Camp Sunshine who have relapsed.

Attribution: Boy facing a recurrence, told to his mother

Growth, coping and support in communities of families facing brain tumors come cloaked in many ways because everyone is undergoing similar procedures and facing similar anxieties (“scanxieties” in many cases). The risks of each surgery, the joy of a stable scan, the ongoing and sometimes enduring nature of brain tumors, and other subtleties which may seem unremarkable to an outsider, all become part of the everyday vocabulary of this community.

Camp Sunshine participants

Families of children with brain tumors have formed a strong, resilient community bond at our camp environment, and come together around support, knowledge, advocacy and research to change the narrative of the pediatric brain tumor journey. The community of families of children, teens and young adults are accepting of each other at all stages, and they are preservers of hope. They are enablers of the future.

*Founded in 1984, Camp Sunshine provides retreats combining respite, recreation, and support, while enabling hope and promoting joy for children with life-threatening illnesses and their families through various stages of a child’s illness. Located at Sebago Lake in Maine, the good people at Camp Sunshine have partnered with the National Brain Tumor Society to build awareness around options like camp settings and onsite sessions to help kids with brain tumors and their families. Last year, the camp, which includes two separate “brain tumor” education weeks at the camp in July, served approximately 657 families.

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