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February 2017 Kelly Burns Theberge

February 26, 2018

 

Kelly (Burns) Theberge - February 2017

My name is Kelly Theberge, and I’m from Vassalboro, Maine. Every year in the U.S. 700,000 people are diagnosed with a brain tumor. Brain cancer is much different than other cancers: it’s very difficult to remove a tumor in the brain, and frequently the person is left with physical or cognitive side effects whether or not it’s removed and whether or not it’s cancerous.
The life expectancy after a brain tumor diagnosis is an average of five years.

 

Five years to say goodbye, five years to live, but most likely, five years to lose everything they ever had—their ability to walk, to talk, to see, to get themselves dressed or feed themselves, and the ability to remember their wife, their daughter, their parents, and the life they once had. They slowly lose everything they ever worked for, and at the same time it ends so quickly.
My dad, Bob Burns, died from a brain tumor at the age of 49. He had three years. He was one of those patients I just described. Not only did he lose everything and his life, but hundreds of people around us did too. He owned his own company. People lost their jobs, their best friend, their husband of 27 years, their son, their dad. I was 18. My sister was 19. My brother was 11. Our lives changed forever.

Everyone’s lives changed forever. It was like a brick wall was put in front of everyone I knew, and they couldn’t move past this devastating event. A piece of everyone died when my dad died. My grandfather developed depression, which manifested into shutting the world out, and actually losing his own ability to mobilize and communicate, which eventually lead to his own death. I can’t imagine losing a child.

My mother, at first, woke up every day to take care of her children, but with the empty expressions day after day, it was obvious she would wake up just to fall back asleep. She would say she already lived the best part of her life. I can’t imagine losing my husband.

My brother didn’t engage in regular conversation or express any sort of feelings for years. I can’t imagine losing my dad at the age of 11. My uncles became angry: angry at my dad for leaving them, angry at the world, maybe angry at themselves? I can’t imagine losing my brother.

I was angry as well. I was 18, and in my first semester of college. I stayed close to home for college, while all my friends got to move on, and live "the college experience." I continued to stay at college close to home for about another year after my dad died, and then moved on as well (only an hour away), and eventually, probably lived "the college experience" too much. I appeared to live to a normal life of going to school and working, but often expressed my feelings clearly through anger or tears. The entire family drifted apart. My dad was the piece that we all needed to be a family. My dad’s friends disappeared. The people who were like my own family were gone forever. Or so I thought.

Eight years later, after finishing my Master’s degree in Occupational Therapy, meeting my husband, getting a job, and finally having stability in my life, I decided to turn it around. There was still one piece of me that wasn’t stable, that wound still felt unhealed, and I had unfinished business to attend to. I have one life as well, and I wanted to live it like my dad lived his—making a difference, and living every single day with a purpose. I wanted to finish my dad’s fight. He never failed; he never lost.

My husband and I joined the National Brain Tumor Society, and have been going to Capitol Hill since 2015 to advocate for more funding and treatment for brain tumors. I am now the Maine State Lead Advocate for this cause with the National Brain Tumor Society. I also created The Bob Burns Memorial 5K – the only fundraising event for The National Brain Tumor Society in the state of Maine. 2017 will be the 4th annual Bob Burns Memorial 5K. Combined, my committee and I have raised nearly $25,000 so far.

With this event, I reunited with my dad’s friends after eight years, and continue to see them regularly. As a matter of fact, on my wedding day this past year, they were the only people I could keep my eyes on as my brother walked me down the aisle. My brother grew up into a respectful, outgoing, funny, handsome man, and my hero. He joined the United Stated Marine Corps. My mother is my best friend. She travels, dates, volunteers, and supports me from behind the scenes. She encourages me to be independent with this journey. As far as the rest of the family, we’re probably as close as most normal families.
I continue to look for fellow advocates, voices, sponsors, and constantly raise awareness in my community, the state of Maine, and as much of the world as I can possibly reach. The more people I can reach, the more people that can be involved, the better our chances are for being the change we need in this world – a cure for brain cancer.

So, I’ve decided not to stop until there is a cure, or at least proper treatment for these patients, and their families. You can’t fund something you have no awareness about.

To become an advocate or help Kelly in any way, whether it’s by phone, computer, joining her in Augusta at the 4th Annual Bob Burns Memorial 5K on July 20th, 2017, or joining her on Capitol Hill – please contact Kelly Theberge at: Kelly.Theberge@MaineGeneral.Org or go to Kelly’s Cause for Brain Tumors Facebook page.