My experience as a Parent Advocate…

I started training for CURE’s Parent Advocate position full time in January. I knew that I would have big shoes to fill, but decided instead of filling them, an almost impossible task; I would walk beside them in my own shoes. It has been 6 months being on my own and then training my job share partner and it feels good. But if I am to be honest, I really staring my training in June of 2001. The 9th of June, to be specific. That was the day I heard the devastating news that no parent ever wants to hear. “Your child has cancer.” It was a whirlwind of activity and new lingo; counts and blasts, marrow and methotrexate.  Hearing those words on June 9th had forever changed the trajectory of my life. I wasn’t just someone who knew someone with cancer. It was in our family. It was in my son.

Austin was a trooper through it all. At the age of 4, he didn’t really understand everything that was going on and would often listen to my conversations with friends to see how he was doing. I quickly picked up on that and would make phone calls or have conversations in his presence to tell people how strong he was and how well he was doing. Later, out of Austin’s ear shot, I would call them back and tell them of my fears and cry. But he was strong and he did well and after 2 ½ years on treatment we were done. We celebrated the 5 year mark with a big party and fundraiser. It was time to give back to so many that had given to us, supported us.

During his treatment I sometimes would ask why?  Why Austin? Why our family? Why?  One day I realized why. It was about the experience, it was about our family’s journey. That was never clearer to me than when I watched my son get up and speak in front of a school full of children about his experience as a cancer patient. As I watched him speak to these children and answer their questions with tears in my eyes, I realized that this was why.

We have had many experiences like that through the years as a family. My daughter, Kelli, who was only 1 when Austin was diagnosed, cut her hair for Locks of Love and is now working on her Gold Award in Girl Scouts designing a coloring book for teens and young adults to use while they are undergoing treatment at the hospital. Austin’s twin brother Brandon has run bone marrow registry drives in high school and now continues to do so in college. And Austin is a Leukemia and Lymphoma Society Ambassador and regularly speaks to school kids about what he has gone through. This path we have taken also led me to take a position at CURE, first as a Director of Programs and now as a Parent Advocate. I love meeting new families and sharing my son’s message of hope with families just starting this journey. Someday I hope positions like mine are not needed and that cancer is eradicated.  It has been 15 years since my son’s diagnosis and even though I can remember it like it was yesterday, I know that his is a story of hope that I will continue to share with families and someday they will have their own story of hope to share.