Collaborative Corner

“Kristen’s Story: A 30 Year Brain Tumor Survivor” by the Children’s Brain Tumor Foundation

Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors.  If you would like to share your story as a guest blogger, please email communications@cbttc.org

 

Submitted by Gary Jaworski, PhD, President, Children’s Brain Tumor Foundation

Kristen is a 30-year brain tumor survivor…

Kristen CBTFMy name is Kristen and I was 10 months old when I was diagnosed with a medulloblastoma. I was hospitalized at NYU for 3 months in the winter of 1989. In that time, I underwent multiple surgeries and started chemotherapy. I had chemo treatments for the next 2 and half years and by age 3, I successfully completed my treatment.

Before getting involved with Children’s Brain Tumor Foundation (CBTF), I didn’t know anyone else with a history of having a brain tumor or a childhood cancer for that matter. There were times where I felt no one around me could relate to me in the sense of what I went through.

When Stacia Wagner (CBTF’s VP of Quality of Life Programs & Research) reached out to me on behalf of CBTF, I suddenly found myself among young adult brain tumor survivors that I could relate to. I met some extraordinary people who, like me, didn’t let their history of having a brain tumor define them. I was given the opportunity to attend the first Heads Up Conference for young adults at Camp-Make-A-Dream in Montana. I connected with a great group of people and got to know their goals and aspirations, and heard inspirational stories. I also got to witness fears being conquered, and encouraged open group discussions about specific topics. Seeing the interactions everyone had with each other was truly special and it’s something I’ll never forget.

CBTF is a great organization and provides a lot of resources and support groups for anyone (children, young adults, and parents alike) who feels like they need somewhere to turn to. Through CBTF, I got involved with multiple events, walk-a-thons, and even spoke at a charity event at Oheka Castle to bring awareness and showcase how wonderful this foundation truly is.

I have seen what wonderful things the Children’s Brain Tumor Foundation can do and it’s nothing short of amazing.  They strive to bring awareness and make a difference in on-going brain tumor research, provide a network for survivors and family members, make resources available to those same survivors and family members, and get young survivors and young adult survivors involved in fun and inclusive activities and events. The staff members that I’ve been fortunate to know are truly special and caring individuals.  I am forever grateful for the experiences and opportunities this foundation has given me.

My advice to young survivors and young adult survivors is to simply live your best life. You are stronger than you know and a brain tumor diagnosis doesn’t define you. It’s part of you, part of your story, but it is just one part of you. Also, know that you aren’t alone and that there is a great community of wonderful people who know what you’ve been through. They are not just survivors but can also be new found friends.  Get involved and stay connected through this CBTF, as it will impact your life in more ways than you can imagine.

First published online at CBTF.org.

NOTE: Just like CBTF was able to help empower Kristen by connecting her with other brain tumor survivors, we are also committed to helping children’s research hospitals connect through the Children’s Brain Tumor Tissue Consortium (CBTTC). CBTF is proud to be the founding partner of this international consortium which is enabling researchers worldwide to collaborate and make breakthroughs like never before…

For additional information about the Children’s Brain Tumor Foundation, visit www.cbtf.org or connect on social media through Facebook, Twitter or Instagram

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