Jon

This story is told in memory of Jon by his spouse, Mary; the two are pictured above with their family.

How would you describe Jon?

Jon’s world revolved around music. From a very young age he was influenced by music. He would wear out records listening to them over and over again. It was the 60s and 70s so The Beatles, Pink Floyd and The Who were favorites and continued to be favorites throughout his life. He amassed a huge album and CD collection. At some point, early in his life he received a guitar which he learned to play. From there he was in a “combo” and many garage bands. He also participated in chorus and musicals while in high school. Jon graduated a year early from high school and was a foreign exchange student to Denmark. When he left for Denmark, he took some clothes and his guitar. While in Denmark he was in a rock band called Silent Running. He remained very close to his Danish bandmates and family throughout his life. In fact, two of his Danish friends were at his celebration of life in Wisconsin.

Jon’s career as an audio engineer came about because he wanted to professionally record his own music but as life happens and bills need to be paid, he spent much of his career making others musical dreams come true. He was very proud of his work.

Jon’s other love was his family and friends. He would do anything for them. Fortunately, in 2019, prior to the pandemic, both extended families had reunions so Jon was able to connect with many relatives prior to his decline. Jon was so proud of his three kids. Fortunately, he was able to see them grow to adulthood. He regretted that he wouldn’t be there for them as their lives unfold.

What was Jon’s experience with chordoma?

Jon was diagnosed with cervical chordoma in early 2010. He was having a lot of trouble swallowing and his snoring shook the rafters. He saw his primary care doctor who referred him to an otolaryngologist. After having a biopsy, Jon was diagnosed as having a chordoma. The tumor was the size of a kosher dill pickle. It was surgically removed through incisions made on both sides of his neck. Jon had a recurrence in 2012 and in early 2013 had another very invasive surgery followed by radiation. Unfortunately, the radiation affected Jon’s vocal cords which ended his singing career. Starting in 2016, Jon was treated with many different medications. Jon was also seen at Mayo Clinic where he received more radiation. Ultimately, Jon stopped treatment because his quality of life had diminished and nothing seemed to be working against the chordoma and he was experiencing more and more physical limitations.

What was your experience like as the spouse of a chordoma patient?

It was so difficult for me to watch Jon lose little bits of himself over the years, his singing voice, the ability to turn his head and eventually the loss of the use of his arms. I felt so helpless to do anything of value but I was with him every step of the way despite the challenges. He remained hopeful and positive. We discussed his treatment options together and he valued my input but, ultimately, I left the final decisions up to him. Even when he decided he had had enough and was entering hospice, that was a decision that he made.

What role did the Chordoma Foundation play in your journey?

We attended the International Chordoma Community Conference in Boston in 2016. It was an eye-opening experience for us. We had never met anyone else with chordoma before. And we were surrounded by other chordoma patients and their families! It was so reassuring that we were not alone. Plus, it was so exciting to hear about all of the research going on. It was energizing and positive. We attended a number of community conferences over the years but the initial conference in Boston left a very positive impression upon us. We referenced the Chordoma Foundation website often. We also strongly suggested to Jon’s doctors to do that, as well.

Hindsight being 20-20, we wish that we had been in touch with chordoma experts earlier in Jon’s disease. At the time that Jon was diagnosed the Foundation was in its infancy and the website not as comprehensive as it is now.

We feel that the Chordoma Foundation is an amazing foundation and is approaching treatment of chordoma in a phenomenal and unique way. They have been such good stewards of the funds provided to them and have made great strides in researching and treating chordoma. Our hope would be that our contribution will help find a cure for every “one in a million” that develops chordoma.

What advice would you give to other chordoma patients and caregivers?

Take your time and consult with chordoma experts. We wish that we had. The initial treatment is so crucial to the outcome of treatment. Contact the Patient Navigators at the chordoma foundation to help guide you through the journey.