When I signed up to attend The National Brain Tumor Society’s Head to the Hill event, I thought it would be a chance to learn more about brain tumor research, government policies, and to talk with other caregivers and patients. I did not expect to have to share much of my own experience and Karey’s battle with glioblastoma (GBM). Honestly, I just wanted to listen and hide in the background. When it comes to talking about Karey’s brain tumor, it is very difficult for me. I can explain the the disease, but when it comes to sharing what she went through, I can barely breathe. Glioblastoma is cruel and has lasting effects on the patients, their families and friends. It is devastating and can happen to anyone.
For those of you that don’t know, Head to the Hill is an annual event for advocates, patients and brain tumor survivors to gather together in Washington, DC to demand Congress support the brain tumor community’s policy priorities. I was able to meet with people from all over Pennsylvania to share stories and demand support for federal funding for medical research and ways to improve the quality of life for brain tumor patients. My meetings were with the offices of Senator Pat Toomey, Senator Bob Casey, US Representative Chrissy Houlahan and Representative Dwight Evans. I was blown away by the vast number of advocates in my meetings. As predicted, I found myself very emotional when it was time for me to speak and ask for the support of Congress. All I could think about was my sister and our family. At first I was embarrassed but then realized that people need to understand that there are not enough treatment options for brain tumor patients. There are currently only five FDA-approved drugs and one device used to treat brain tumors in adults, and there is not a single approved treatment specifically for pediatric brain tumors. The five-year relative survival rate for all malignant brain tumor patients is only 36%. For people like Karey, who are diagnosed with GBM, the five-year relative survival rate plummets to less than 10%.
Listening to other people I found myself feeling sad and angry. Why didn’t my sister get more time? How come her treatment plan didn’t work to prolong her life? The event ended with one final virtual meeting with everyone who participated in this year’s Head to the Hill. My feelings of anger and sadness lessened, and I was hopeful. I hadn’t felt this way since a few days after Karey was first diagnosed. She was always positive and never showed fear, even with her setbacks. Karey always talked about how she was going to beat the disease because she had to see her four young boys grow up. When that did not happen, all my feelings of hope vanished. The brain tumor community needs people to stand beside them and fight for more treatment options and one day, a cure. Please visit the National Brain Tumor Society website and see how you can make an impact. It is as easy as sending an email to your governmental officials. I had never heard of glioblastoma until October 2016, and now I hear of far too many people being diagnosed with a brain tumor. Please join us, take a few minutes out of your day to learn, to advocate, or even just share Karey's story and the stories of so many others like her.