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By Stacia Wagner
Tuesday, July 12, 2011

After reading Aleksandar Hemon’s recent article in The New Yorker, The Aquarium (June 13& 20), I am reminded of the words used by families we talk to every day at Children’s Brain Tumor Foundation. Hemon’s nine month old daughter, Isabel, was diagnosed with A.T.R.T last year.  Like all parents we talk to, he speaks of unimaginable fear, loss of control, and the inability to live in anything but the current moment.

He talks poignantly of dealing with hospital life. Describing going to the cafeteria with its “grim neon lights and grey tabletops and the diffuse foreboding of those who had stepped away from suffering children to have a grilled cheese sandwich”(p. 52) and the need to play music to “counter the soul-crushing hospital noise.” (p 54).

He also talks about the before and after life.  He states after hearing of the tumor “before was now and forever closed”.  For all of the families we work with each day, each transition period, each challenge and each success are reminders of before and after.

And then he talks about the fact that your children are supposed to outlive you by several decades. Thinking about the death of your child should not be a door that is opened until much later in your child’s life. For those parents in the brain tumor world who from the moment of diagnosis have to face the fear of the death of their own child, the door is now forever open. In addition he talks about how the diagnosis causes a “breakdown of all biological, emotional, and family order.”(p. 58). The isolation from reality and even from friends and family which he discusses are so prevalent in the CBTF community. Our organization was founded by parents and professionals who recognized how isolating a pediatric brain tumor diagnosis is. We hope to continue to build peer support for parents such as Mr. Hemon.

Hemon talks about the isolation even within the cancer community due to the rarity of his daughter’s diagnosis. He mentions reading the CBTF Resource Guide for Parents of Children with Brain or Spinal Cord Tumors and the need to have more information on his daughter’s rare brain tumor. As we work on the new edition, we will make sure to expand this information.

Thank you Mr. Hemon for sharing your personal story and so many emotions which will help others to understand the brain tumor world and grief, and for being such an amazing voice for those many unheard families.

Hemon, A. (2011, June 13). The Aquarium, The New Yorker, June 13 &20, 50-62.

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