An Inspiring Visit To California

Along with hundreds of family and friends (many of them talented musicians), I recently had the privilege to participate in cholangiocarcinoma (CCA) Warrior, Tom Leitzke’s, Celebration of Life in Santa Cruz, CA.

As the graphic image noted on the T-shirts worn by many at the event, Tom was an Artist, Musician, Creator, Husband, Father, Gramps, and CCA Warrior. Everyone who knew Tom greatly respected how he fought a courageous battle for 16 years while inspiring and encouraging others as well.

Tom’s wife, Roxanne, asked me to speak at the celebration and I was honored to do so. After saying “yes,” I thought, how can I possibly share the positive impact he had on so many; in just a few minutes? It wasn’t easy, however, I started by going back to when I first met Tom at a Cholangiocarcinoma Foundation (CCF) Annual Conference. The connection to Tom started through my daughter, Sarah Bennett, a fellow CCA Warrior. Sarah, Tom, and many others in the CCA community across the U.S. and beyond bonded together as they fought their own fight. They all respected one another and the way they approached their personal situations. Tom continued to maintain a positive, thankful outlook on his life and for those who also faced the same difficulties.

One of the components of the awareness and fundraising 15,000 mile Journey of Hope road trip I did at this time two years ago was to visit and thank a number of people for their support and friendship of Sarah. Tom was one of those people. Why Tom? Quite simply, he was a true guiding light! Upon arrival at Tom and Roxanne’s home, I knew I was in the right place. I was greeted outside by a unique graphic work Tom had created in honor of Sarah, which included an image of a nearby lighthouse. To some, this may seem like a minor point. Not to me! It is known by many that lighthouses are a symbol of hope. The fact that the one in Santa Cruz was right down the street wasn’t lost on me.

Also not lost on me was the fact that a reproduction of this same graphic was one of the first things I saw when entering the building for the celebration!

The connection Tom and I felt went way beyond cholangiocarcinoma. We loved our families, the ocean, lighthouses, travel, and yes, even playing drums in bands (for me, that was a long time ago).

In gathering my thoughts for the celebration, I started thinking about what it takes to be a great drummer. Online I saw eight skills listed: Persistence, Patience, Passion, Capitalize on Constructive Criticism, Feel, Adaptability, Time Keeping, and Active Listening. To me, each of these items are also LIFE skills. If we’d all practice them in everything we do like Tom did, the world would undoubtedly be a better place.

My wife, Linda, had also reached out to a number of patients and caregivers seeking comments about how Tom impacted their lives. Following are a few examples. As you read them, I believe the eight skills I listed will resonate.

“Speaking for myself, I imagine that there would be nothing else greater to honor Tom’s efforts than to do as Tom did. To rise above our best and let that be good enough. To rise above your best creates the light and the inspiration for those who follow. So do Tom a huge honor and take him along for the ride as you rise above your best.”

“I admired Tom for his fortitude in dealing with this cancer for so many years. Cholangio threw almost everything it had toward him & he fought it every step of the way without allowing it to change his upbeat attitude about life. He was level-headed & gave good advice to his fellow warriors. I looked up to Tom, I think we all did.”

“Tom’s courage and humor were so fortifying and encouraging. He was very open about his own experience and to any questions. He gave so much to this group… hope, inspiration, support, wisdom, strength, and an example of how to persevere. Friend, mentor, cheerleader….an example of how to live.”

Following several presentations, the stage came alive with a variety of songs by a very talented mix of musicians. Whether young or seasoned pros, rhythmic, or melodic, they covered a broad spectrum of tunes which was impressive. Tom had played with many of them over the years which made it even better. Truly, the Santa Cruz area has a great musical scene!

Of significance, I was pleasantly surprised to be joined at the event by Dawn Bonin (patient) and her husband, Brandon (caregiver). I previously met Dawn and Brandon at a CCF event earlier this year, and it was great to see and spend time with them again.

Dawn was one of Tom’s mentees, for which she is grateful. They met last year when he was assigned as her mentor through the CholangioConnect initiative following her diagnosis and Whipple procedure. Living in Los Gatos, CA, Dawn felt blessed to live about 30 minutes from Tom’s home. They initially connected on the phone and text but being close in proximity were also able to connect in person. Dawn shared that some of the things Tom said carried her through the toughest days following surgery and chemo. He was calm, kind, passionate and positive. When they were both feeling well, they’d go for walks around his neighborhood. He shared his love of the beach, for the amazing whales that would swim by and he showed her the most amazing grove of trees where Monarch butterflies hung out by the hundreds. He shared his knowledge, his wisdom and his love for life, for music and for Roxanne. Dawn said she will be forever grateful for his presence in her life. Need I say more?

Dawn and I also discussed the potential of starting a Bay Area volunteer CARE Team. I was excited to hear her say yes to the opportunity. The hope is to bring patients, caregivers, medical professionals and others from the area together for social networking, advocating, research and education. For those in the Bay area, more about that soon, and Thank You Dawn!

Finally, on a lighter note I have to report how Los Gatos, CA., got its’ name. As taken from the city’s official website: Los Gatos was originally named La Rinconada de Los Gatos (Cat’s Corner) by early settlers due to the screams of mountain lions prowling in the night. Well, how ’bout that!

Give A Little Whistle!
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