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By Kayla Giacin
Monday, November 5, 2012

As many of you know, Hurricane Sandy hit the east coast very hard just one week ago today.  While CBTF is a national organization, the fact that our office is located mid-town Manhattan means that naturally, we have not only seen and experienced the extreme impact of the hurricane on this side of the country but how the impact has been on many of the families with whom we work with.  Fortunately, most of those we know are safe but some families had to evacuate, some were and still are without power and most everyone had some sort of disruption – be it major or minor- to their daily lives.

This brought up an interesting discussion among our new parent Facebook group, “How do I help my child get through this challenge?” For many, it is purely an emotional one but throughout the conversation is was realized that many survivors of a life threatening illness such as a brain tumor experience some level of PTSD (post-traumatic stress disorder) where a disruption to daily life, such as a hurricane, can be a huge source of anxiety.  The feeling of not knowing what might happen the next day can bring back very similar feelings that they had during their diagnosis and treatment.  Most young people don’t have to worry about “what’s next” and have never experienced worrying about the long lasting damage that some event in their lives can have.  A brain tumor survivor however, may worry about their friends and their safety, how they would access medical care if they were unable to leave their homes and probably the most negative and relatable to having had a life-threatening illness, if and how their life would get back on track after the devastation of a hurricane has occurred.  Having a brain tumor changes not only the present but also everything that the child has known up to that point in their lives. Their safety net has ripped, their family dynamics have changed and their life remains full of worry about the long lasting impact of this tumor on their health. How is a hurricane so different? How does somebody who has already experienced such tremendous loss view this other significant occurrence in his or her lives? How do they know that their life will get back to a normal, as they already have had to spend so much time defining a new normal?

As one survivor said said, "I've looked at the sunny side too and I all can see are trees and yellow tape."

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