/GIST Keep Swimming: Words to Live By

GIST Keep Swimming: Words to Live By

By |2018-10-30T09:52:37+00:00April 8th, 2016|Member Stories, News, Newsletter|

Life with cancer is like tossing all your dreams, goals and achievements into a bag, shaking it up and dumping it onto the floor to be stomped upon. Some say I was lucky to get my diagnosis at age 16, before I had a career or a family to support.

Erin MacBean

Erin MacBean

What those people don’t understand is that young-adult cancer patients have to rebuild their lives, compete against healthy counterparts for careers, try to forge relationships with a cancer cloud hanging over them and wonder about the risks of starting a family. I thought I had managed to survive those years of my life with a lot of luck, and I even began to believe I had gotten over the worst of it. I still had tumors to deal with; but I got married, had a child and bought a house. Life was going well.

Then the market crashed, jobs and insurance were lost and medical expenses went up. It was like getting diagnosed with cancer all over again. Quietly, I slipped into a hard depression. I didn’t talk about it much, as I felt my life had been easier than many other cancer patients — my tumors, thus far, have been manageable. However, I felt worthless because my family lost everything we had due to my health. It wasn’t until the LRG threw a lifeline to me that I began to believe my life had some value once again.

In the past, I coped with depression by helping others. That’s why, years ago, I started volunteering for the Life Raft Group. In 2014, the LRG invited me to Life Fest on a scholarship provided by generous donors. I met with a group of young patients, as well as children of GIST patients, and we formed a branch-off group called GISTKids. During one of our meetings, we reflected on how the character of Dory in the movie, Finding Nemo, sang this advice for when times got bad: “Just keep swimming.” Moments later, we all agreed that “GIST Keep Swimming” would be the GISTkids motto. Little did I know that this motto would get my family through some of our hardest times to date.

GIST keep swimming

GIST Kids

Once I got home from Life Fest, I threw myself into creating a place for GISTkids to go. Building a website, finding research content and translating it all into kid-friendly terms turned out to be more of a trial than I thought it would be. During each challenge, I would sing GIST Keep Swimming. With the help of a few great friends, we got a website up. Our biggest achievement, however, is that this year’s Life Fest 2016 will have its own pediatric and wildtype GIST panels and meetings!

Not only are things looking great for GISTkids, but life has turned around for me as well. My husband and I took a leap of faith and moved from Florida to Washington state. There were more jobs available in my husband’s field in Washington, and we learned that being a resident of the state yielded a better chance at landing a job. So, we sold everything to move and my husband took on two part-time jobs just to make ends meet. The first few months were rough and money was extremely tight, but we kept singing GIST Keep Swimming.

In October, my husband got a call and was told he was hired for his dream job! That same company learned of my story, saw the skills I had gained as a volunteer and, on March 1st, hired me as well. They even let me work from home, which allows me to finally get off disability and focus on rebuilding my life again.

If it wasn’t for the scholarship to Life Fest, I may have never found my purpose and learned to sing a motto that has helped me through the challenges of life. If you haven’t experienced a Life Fest, please consider attending this year. You won’t regret it. To those who have donated to the LRG in the past, or those who are thinking about donating now, please know that it is money well-spent. Your donations give people like me a lifeline — or, in this case, provides a life raft for us all.

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