Ritchie Johnson, MBA, BSN, RN, Chris “CJ” Johnson Foundation

In June 2011, my youngest son Chris was diagnosed with renal medullary carcinoma (RMC), a rare and aggressive form of kidney cancer. As a registered nurse, I had spent my career caring for others, but never in my wildest dreams did I imagine I would be caring for my own son in such a devastating situation.

When Chris received his diagnosis, I made the difficult decision to put my career on hold. I needed to be fully present for him—to accompany him to treatments, advocate for his care, and fight relentless battles with the insurance company. Despite having support from family and friends, I often felt isolated and helpless. RMC was virtually unheard of at the time; there were no support groups, no community, no advocacy. I felt like I was navigating uncharted waters alone.

The helplessness I experienced as a mother was overwhelming. I couldn’t stop the pain my son was enduring, and I knew there was no cure for his cancer. The knowledge that I would ultimately lose him weighed heavily on me. On top of caring for Chris, I spent countless hours fighting with the insurance company, which had initially labeled his condition as preexisting and refused to pay for his treatments. This battle became a full-time job in itself, as I feared that without proper coverage, his treatment would cease. It wasn’t until I contacted the Texas Department of Insurance that we were able to resolve the issue and secure the necessary payments for his care.

The experience left my life in shambles. I was broken financially, emotionally, and spiritually. Watching my son suffer and knowing I was powerless to change the outcome was a pain I can hardly put into words. Despite all of this, I stood by his side until the very end. Chris passed away 15 months after his diagnosis, with me holding his hand.

In his memory, I have dedicated my life to raising awareness and advocating for RMC patients and their families. No caregiver should have to endure the isolation and helplessness I felt. Through my efforts, I hope to ensure that others facing this rare and devastating cancer find the support and community that were unavailable to us.

His memory will forever live through the Chris “CJ” Johnson Foundation Inc, established in 2012. What began as a small effort to honor Chris’s legacy has grown into a worldwide movement, advocating for RMC awareness, supporting patients and caregivers, and funding research to find a cure.