Almost exactly one year ago Jon was diagnosed with primary mediastinal germ cell cancer. This rare, aggressive, terrifying cancer took off and was unbeatable. Despite going to the “best” doctor in the country, we couldn’t control the disease. Five different treatments, three different cities, being told to give up, not giving up, bad news after bad news, high hopes for a split second, and then two weeks of unbearable pain.
As unfair as this year has been, Jon spent his last few months brainstorming ways to try and prevent this agony from happening to anyone else. It seems like an impossible problem to solve for a tumor that makes up only about 2-5% of all germ cell tumors. Jon even reached out to his Oncologist to ask his opinion on some of his ideas, like screening young adults for raised AFPs or other blood markers indicating cancer. He was told what we expected, it’s not feasible for something so rare. We continued to think of other ideas.
Jon and I had a mutual understanding of what was most important to us, which was that no one should ever have to go through what we went through. The the pain Jon personally experienced physically and mentally, as well as the pain his loved ones felt, is something so unfair and impossible to even fully comprehend. Going into each treatment with the hope of a small percentage of success, feeling so desperate you would do absolutely anything for an ounce of good news, but constantly being knocked back down was terrible.
We will help patients and families going through this disease. We will build mentor programs, increase awareness of primary mediastinal germ cell cancer, create a hub for information to help others, increase research initiatives, financially and creatively support end-of-life wishes, and so much more.
The world lost a beautiful, brilliant soul on January 28th. He was destined to do amazing things in his lifetime, and we will honor that and build something worthwhile. We all love you Jon❤️