Chapter 2 - Kevin
Kevin:
Two weeks ago, we attended the Minnesota Twins’ Diamond Awards. This is the Twins’ Annual Awards Ceremony (MVP, most improved, journalism lifetime achievements, etc.). The proceeds of the evening’s program go to the University of Minnesota’s Department for Neuromuscular Diseases.
We have chosen to get care through Dr. David Walk and his team at The University of Minnesota for a few reasons:
It’s by far the most convenient.
Dr. Walk is one of the best doctors Tessa and I have ever worked with (professionally or personally). He is always accommodating, never annoyed, and never hurried (although exceptionally busy). He truly cares about us as patients and people.
His request that we assist with a fundraising effort developed into our patient story. In my biased opinion, it’s a perfect one. The story doesn’t just highlight my journey; it highlights a decades-long friendship with my friend, Joey Vannelli. It stresses my love for my wife, Tessa. It emphasizes the competency of Dr. Walk and the University of Minnesota. But, my favorite part is the focus on the role sports played in my life and childhood.
Filming this was therapeutic for a few reasons:
It allowed me to walk down memory lane with my buddies and family. I asked many of them to find old sports (and party) photos of us. I haven’t taken this journey since the diagnosis, but it brought back so many amazing memories of the fun, the grit, and the team-building aspects of my high school athletics career. Every good (and possibly “bad”) part of me finds roots in athletics growing up: developing friendships, leading, following, getting really, really mad, and fighting…not fist fighting, but never going down without a fight.
It allowed me to reflect on the battles Joey and I are fighting and reminded me that I am not alone in this journey. While I may be fighting ALS, my friend Joe is facing his battle with Multiple Sclerosis. He was always one of the best athletes I’ve known…it seemed to come so naturally to him. Those talents may fade for all of us, but the lessons are applied to his fight. He is not afraid to try something new, to change his lifestyle to feel better, to laugh at himself when shit gets really hard, and to stay focused on finding a positive outcome to his situation.
Joey is my role model as I write this blog from my hospital bed at The Mayo Clinic. Tessa and I come down here monthly. Every three months, they inject 75 million+ of my own stem cells into my spinal fluid in hopes of getting some healthy signals through to my dwindling nerves and muscles. Has it worked? We don’t know…we don’t know what my progression would look like without it. What we do know is that we researched every possible clinical trial we could find for ALS with the one primary caveat: give me the MOST aggressive treatment option available. Why? Because, like Joe, we are not going down without a fight.
Thanks for reading,
Kev
Quick Note: We want to thank Dr. Nathan Staff and the research team at the Mayo Clinic. They are also an unbelievable group of doctors and humans. We are truly blessed to call these two facilities our care team.