Our chordoma story began when my wife, Tiffany, began noticing a discomfort in her sacral area. Some time later, after a fall while snowboarding, she felt that she bruised her tailbone and went to a local hospital to have the injury checked. That led to a discovery of some kind, and a biopsy was scheduled. After the biopsy resulted in a benign diagnosis, Tiffany decided to get a second opinion at Mayo Clinic. Her S3 sacral chordoma diagnosis came shortly after that trip to Mayo Clinic. She was 27 years old at that time.
Tiffany had surgery at Mayo Clinic, after which there was a three-year period where every scan came back clear. There was no information to be found at that time on a person having a child after a chordoma diagnosis, and during Tiffany’s second pregnancy — when scans weren’t permitted for nine months — her chordoma recurred, then metastasized.
So the immediate joy of having a growing family was matched with this news and a poor prognosis.
For me, as the spouse of a chordoma patient during those years, worry was always present. The children were our way to survive this ordeal. It wasn’t easy, but watching them grow and attempting to give them great experiences that other children would have without the gloomy outlook also helped us experience things as a family in a very unselfish way. We saw that their mental and physical health was directly related to ours and vice versa. Every action was for their future, and everything we did as a family had 100% of our focus.
It was difficult needing to travel to or stay in a different city for treatments. We found ourselves talking with many people in the same situation. I made a list of items and locations that were within a reasonable distance for children to go to escape the hospital areas and be stimulated. I tried to get coupons from local children’s museums and gaming places so I could hand them out to people who could use them. Having more information of that type available to us would have been a helpful resource. I also wish we’d had an advocate that could look at clinical trial options. My wife did so much of her own research in that area, and she needed to be reaching out herself.
In those years, Tiffany’s lengthy medical ordeal included radiation, additional surgeries, and multiple clinical trials. But despite every effort, she died in 2014 at the age of 35.
Since both children were so young it was not easy to explain death to them. We read so many books and talked to therapists. Their resilience was like nothing I had seen before. Like a compass to point you toward the view of the big picture.
If I were to give advice to a patient or partner of a patient, it would be this: There is never enough time; no time here with your loved ones is long enough. Everything seems to move in slow motion when it comes to tests, procedures, recovery, and dealing with insurance. The less you can fixate on the length of time those stressors are taking, the better. Compartmentalizing that piece of your life so you can stay open to the positive events in life will be mentally healthy for you, your partner, your children, and everyone around you.
Today, Tiffany is remembered as someone who had a love for all of the experiences and people she encountered. She had the ability to relate to any person she met, and she enjoyed listening. She was very kind, and always honest, with a huge amount of empathy and support for those around her. She had a quick humor that could soften even the most serious situations. She was a biomedical scientist with goals to have her research and experiences help humanity.
Now, part of the way I honor Tiffany’s memory is by supporting the Chordoma Foundation as a donor. It may be the only action I can take to help things in the long run for other patients. This cancer is horrendous and rare cancer research is severely underfunded. When Tiffany was still with us, we raised funds together through an endurance race. I also help raise awareness by telling her story.
Tiffany’s focus on our family set an example of how I continue to raise our daughters. The way she lived her life is her legacy: To help anyone that you can and to enjoy every experience. I am fortunate to have been part of it and continue the best I can with our daughters.