Need answers or support?  Call 866-228-4673


By Kayla Giacin
Tuesday, September 11, 2012
Looking very soaked after my first time standing up on a surfboard!
Looking very soaked after my first time standing up on a surfboard!

A very humbling and rewarding part about working in the brain tumor and cancer community is that I will never learn all there is to learn about brain tumors.  Every day is a chance to meet new people, learn new facts or hear somebody else’s story that might be very different from my own.

My work hours don’t run 9-5 as I am always interested in what’s going on in the community and as we all know, very few things go on schedule or according to plan when a loved one is diagnosed with a brain tumor.

Just last week, I learned some valuable lessons about the unique nature of the brain tumor world while I was away on vacation.  I had the fortune of attending a camp at First Descents, an adventure program for young adult cancer survivors where the participants are challenged to do amazing things like rock climbing, white water kayaking or surfing for 5 days in the company of other adventure goers and cancer survivors.  I was able to go surfing in sunny Santa Barbara, California and had a great time of challenging myself and reached some really outstanding personal achievements such as pushing myself to go back into the ocean when I thought I had enough and standing on the board and “riding the waves” for longer than I ever felt I could.

Being in the company of survivors of multiple types of cancer also taught me a lot about what makes brain tumor survivors unique.   Most of my fellow surfers were diagnosed as young adults compared to me, who was a child at the time.  However, I noticed that I had a lot less “get up and go” as others as my energy drained quickly and my balance on the board was much more difficult to maintain.  Most of the participants besides myself lived on their own, had their own families and were either working or in school.  It is not uncommon for a brain tumor survivor to have none of these things by the time they are my age or older.

These sound like discouraging things and there were times that even in the supportive environment I was in, felt isolated or like I had less in common with these survivors than they had with each other but it helped me to put my life into perspective in a very real and empowering way.  It helped me to realize that although the things that make brain tumor survivors unique can set us a part from our peers, it can teach us things about life such as being grateful for our achievements as they stand on their own rather than when being compared to other people.  For example, I stood on a surfboard and rode a long distance – perhaps it happened the day after some of the other survivors but this was something I never imagined myself doing and know that most people without brain tumors or cancer have ever done!  I can take this memory home with me and the next time I feel insecure when I trip over my own feet or drop something that I’m holding, I’ll remember the first time I stood up on a surfboard.

In the brain tumor community, it’s important that we don’t focus on our limitations but realize that we can get around many of these by adjusting harsh expectations of ourselves.  Things might have to happen in their own time and with steps that other people don’t have to take but I believe the end result is even more appreciated when it’s attained. 

For more info on the First Descents program and how young adults can get involved, go to

©2009 Children's Brain Tumor Foundation.    1460 Broadway, New York, NY 10036    (866) 228-4673

Privacy Policy   |   Site Map