Nearly six years ago, we heard the words that would completely change our lives: “you have chordoma.” It didn’t seem possible. At the time, Dan was a happy, healthy 29-year-old guy who, other than a few nosebleeds and vision issues, had never had any serious medical problems.
But a routine scan by our ear, nose, and throat doctor revealed a large mass in Dan’s skull. The local radiologist identified the mass as chordoma, and a second doctor in a larger hospital nearby confirmed it.
Recently married and focused on our careers, we both thought this was going to be a quick bump in the road. We’d research what this chordoma thing was, tackle it head-on, and get back to work. It was through this research that we first came across the Chordoma Foundation, whose educational materials and Peer Connect program quickly became our go-to resources to figure out what questions to ask, what treatments to pursue, and how to handle the emotional and physical toll of this disease.
After two complex, skull base surgeries followed by radiation, Dan recovered and we looked to the future. Armed with a fresh perspective, we decided to slow down, have our daughter, Conley, and focus on spending time together as a family.
Unfortunately, chordoma wasn’t done with us yet.
Five years, three recurrences, over a dozen surgeries, and several experimental treatments later, we’re still fighting. It hasn’t been easy, and many days are a physical and emotional struggle. But because of the Chordoma Foundation, we have a strong network of peers to lean on, access to the top doctors and specialists in the field, and hope that the science, which is moving so quickly from lab to clinic, will benefit Dan while we await a cure.
The outlook for families like ours has changed dramatically in the past 10 years, but more effective treatments and a cure are still urgently needed – for Dan and so many others. That’s why we support the Chordoma Foundation. Because chordoma is a solvable problem, and with the Foundation’s leadership, and all of our help, solutions are within reach.
Dan and Brittany Johnson
Chordoma patient and wife
In 2017, Dan and Brittany Johnson shared with our community the story of Dan’s six-year battle with chordoma. In January 2018, we lost an incredibly strong, brave, and kind member of our community when Dan passed away.
We’re grateful to Dan and Brittany for allowing us to share their story and we will continue to fight every day — on behalf of Dan and everyone whose life has been taken by chordoma — until everyone facing this devastating disease has a cure.