I founded the Oklahoma Brain Tumor Foundation after my 18-month-old son Cade died from a brain tumor in 2000. He was diagnosed at six weeks old, and there wasn’t anybody on a community basis to help me, to provide resources or financial assistance, to say, “Have you done this? Have you looked here?”
After Cade died, I immediately began working with families affected by brain tumors. I held my first support group meeting in April 2000. My initial intent was to be a support system for families who were going through what I went through. I likened it to being in a dark room, searching for a light switch, but no one was there to provide help or turn the light switch on for me. I wanted to provide that for these other families. When my son was sick, we lost almost everything we had. There are so many families that don’t have a family that is in a position to help them financially. Some families end up homeless because they can’t afford to pay rent or bills. The Oklahoma Brain Tumor Foundation developed into providing all of these different services that came out of my personal experiences.
I am extremely proud of what we provide for our families. We have patient navigators on staff that help families overcome whatever challenges they’re facing. We are able to work with families and put support services and assistance in place, so the family can concentrate on taking care of their loved one as much as possible. It’s great to raise money for research and educational resources and support groups, but what families need is someone that’s going to hold their hand and walk through these processes and take lots of stress off their plate. There is such a need for the type of services we provide; we hope other organizations start to provide services for immediate needs.
I feel very blessed that I was entrusted with something as important as these families’ lives and this organization. I feel blessed that I had that little bit of time with my son, because he was an amazing little boy. I feel blessed to be able to work with these families every day and see the impact that our staff members are able to have in these families’ lives and the relationships that are built. Everybody always says, “How can you say that when your son died?” The reality is that he didn’t die for nothing, and there have been hundreds of families whose lives have been made better because of this one little boy who suffered with a terrible disease. Because of that, so many people have been helped. Just to be a part of that is an amazing thing.