“My friend Joey was diagnosed with stage IV translocation renal cell carcinoma in 2013,” Lucinda shares. “At that time, there was no standard treatment for his disease. He underwent surgery and five different chemotherapies, but none of these slowed his disease progression.”
Joey’s cancer progressed rapidly, and sadly, he passed away in 2014. Lucinda says, “It still feels hard to think about his fight against this awful disease. It’s so hard to see someone you love get weaker and less able to do the things they love.”
Lucinda and Joey’s family have turned their heartache into powerful advocacy. Lucinda learned that pediatric cancer funding only made up 4% of cancer research funds. “What made it all the more pertinent and clearer that funding was needed was Joey’s trouble getting the PD-1 immunotherapy,” explains Lucinda. “Adult clinical trials had been underway, but pediatric trials kept getting pushed back. The first PD-1 immunotherapy to be approved was only officially for melanoma. All of this points to the need for more funding for pediatric and kidney cancers.
By the time Joey began immunotherapy, it was too late. However, Joey’s legacy lives on forever in the hearts of all his friends and family. Lucinda especially feels passionate about Joey’s legacy and continues to fight for research funding and options for pediatric patients: “We wanted to do anything to make it better, and for me that meant reading a lot of the scientific literature on the disease and information on clinical trials. Even if there’s a small chance of an experimental drug working, it’s the small chance that gives us hope.”
Lucinda offers this motivation that inspires her on hard days: “I think of all the progress that has been made — cancer research and biomedical research as a whole is doing a lot. The speed is breathtaking (just look at Covid testing and vaccine development). Most things in the moment seem like small steps, and sometimes those steps aren’t in the right direction, but they still give me hope that small things that I can do, like advocacy and spreading awareness, can actually make a difference, and ultimately push us forward.”
Thank you, Lucinda, for sharing your experience with loss, hope, and perseverance. Joey’s story is one that demonstrates just how urgent our work is, and we thank you for your continued advocacy.
To be an advocate for kidney cancer research funding like Lucinda, join our team for 2022 Advocacy Events.
To learn more about being a KidneyCAN advocate, email our Legislative Patient Advocate Deb Beyhan at firstname.lastname@example.org. To read more about Joey’s Wings, click here.