Lyon Forever: ‘It’s not goodbye, it’s just see you soon’

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A "We love you Lyon" banner is hung in honor of Lyon Herron on Wildife Road in Point Dume. Herron, who was diagnosed with Gardner's syndrome, has decided to enter hospice care. Photo by Samantha Bravo/TMT

Proud Malibuite Lyon Herron has died at 31 after battling a rare disease, Gardner’s syndrome, for most of his life

By Barbara Burke

Special to The Malibu Times

“My baby traded in his broken body for golden wings this morning at 11:27,” Barbie Herron Conkling, mother of Malibu native Lyon Herron, 31, posted on social media on Dec. 17. “My mama heart is shattered but at the same time resting in peace with knowing that the suffering died alongside the body.” 

The accompanying heartwrenching, yet immensely inspirational image that Conkling posted depicted her tenderly embracing Lyon, embraced by the calming purity of white flowers as his spirit left our realm. It’s the most challenging way for a mother to say I’ll see you later instead of goodbye because Lyon preferred the former valediction.

Recently at the Malibu High School boutique, where she had a booth with items from her boutique Coconuthaus, Conkling told this reporter, “Lyon’s been fighting his disease since he was only 4 years old!” Despite all the battles, Conkling always has found the time to give back to the community that embraced her and Lyon as they persevered in his decades-long battles.

Lyon was diagnosed with Gardner’s syndrome, a rare disease that puts patients at risk for developing colorectal cancer and ongoing desmoid tumors. The disease is caused by a genetic abnormality. There is no cure, but symptoms can be managed. Lyon later developed stage 3 colon cancer and was treated with a variety of conventional and alternative treatment modalities. He’s endured dozens of surgeries, including the removal of a 6-pound tumor, stem cell therapy, immunotherapy and chemotherapy. He and Conkling traveled near and far for medical treatments, trying to find solutions or at least ease the relentless pain.

Lyon was an incessant warrior inspired by optimism and true grit, and his indefatigable mother and advocate confronted Lyon’s disease, buoyed by the support in our loving, caring community and the family’s close-knit tribe of those most close to them who did all that was possible to bolster them throughout their harrowing battles and the brief interludes when Lyon was well enough to pursue happiness. 

Lyon was, in a phrase, a man’s man.

Early in December, Lyon decided he wanted to end his battle his way. He announced that he was leaving palliative care and entering hospice. Taking to Instagram, he posted:

“So I’ve made the decision to move palliative care to hospice care. The suffering and pain has just gotten past the point of being able to handle it. For those of you that know me, you know that I have a very unique connection to death. I’ve been so close to it so many times and have literally been told that I wasn’t going to make it through the night more times than I can count.. I’m so comfortable with the end of this life’s journey that I honestly am welcoming the end with open arms. I don’t want anyone to mourn me when I pass, but to celebrate the life that I lived. I am so blessed and so grateful for the life that I’ve lived. I’ve been living on borrowed time for a very long time now and now, it’s my soul’s time to move on. I’m doing it the natural way so who knows how long it will take, but I want to thank each and every one of you for keeping me going through the toughest of times. Like I said, I am blessed. I love you all from the bottom of my heart and will always be here as a guardian angel to my loved ones. It’s not goodbye, it’s just see you soon. So excited to finally get to see my uncles who have passed before me. Adios friends.” 

His post was met with hundreds of supportive, loving responses.

“Lyon is departing this world exactly as he lived,” Conkling posted on Facebook at the time. “Full throttle till the very end.” 

​Early in his adulthood, Lyon became addicted to drugs and alcohol. However, warrior that he was, he later committed to sobriety. He once told interviewer Ashley Loeb Blassingame of “The Courage to Change,” a recovery podcast, “Anytime you cut into my body for a surgery, I grow a desmoid tumor in the same spot. I have a 99 percent regrowth rate on desmoids and then also on top of that, I’m non-receptive to 98 percent of the treatments in the world.”

He added, “I’m a big advocate of cancer research and am spreading awareness for it, for all cancer in general, but the misconception is that I have cancer and I don’t have cancer.” 

To be accurate, Lyon suffered from colon cancer and recovered. His Achilles heel was the inexorable recurrence of the painful desmoid tumors and their many, painful and complicated side effects.

Along the way, Lyon had interludes of relatively pain-free times and he made the most of them. He was a surfer, moto rider, photographer, cancer advocate and an entrepreneur — “Heaven Ain’t Ready,” his anti-cancer clothing line, has inspired Malibu and supporters worldwide for years. It even inspired his Malibu High School co-alum, Nathalie Touboul, who assists David Shore, a producer, writer, and creator of “The Good Doctor,” to write an episode inspired by Lyon. The episode aired on Jan. 23 in the B run of the “Quiet and Loud” segment.

Lyon was a member of a supportive, loving family and community. He was, in another phrase, a proud Malibuite.

“We’re four generations in Malibu and we’re five generations in West Los Angeles.” Lyon told Blassingame, adding that his great-grandfather built the third house on Pt. Dume. He also shared that his family home burned down in the Woolsey Fire. Wow! Not fair! Enough already!

For decades, as Lyon and his mother matched his disease’s tenacity, fought bravely and won quite a few battles, Conkling manifested one of her many inspirational Instagram posts “A strong woman will always turn pain into power.” Between Lyon and Conkling, they powered through decades of challenges, victories, and interludes of relief. Finally, Lyon has permanent relief and his many friends and supporters will commune with the family as they continue the journey of celebrating and honoring his life, his dignity and his true grit.

“Lyon has and will always be our Lyon,” Malibuite Matt Diamond said. “There are so many all time amazing stories and memories. Let’s just say Lyon was truly raised and adored by our Malibu Community. He is our Lyon … A 4th generation Malibu native….Loved, raised and adored by his family and friends. Lyon has and will always be a beacon of light felt around the world through our Surf, Skate, Moto and Art community. He brought so many smiles and laughter to all of us as well as being a role model of strength, courage and humility. Lyon lived this life to the fullest….His spirit has and will always shine amongst us all. May we all strive to be strong and courageous like Lyon. Let the journey continue….. Forever with us all. We love you Lyon!”

If one might inquire about what Lyon met to Malibu, many such as Diamond would respond that Lyon was and will always be the best of Malibu. A sign at the theater marquee at Malibu High School says it all: “Lyon forever.” 

Responding to the school’s posting a picture of that sign on social media, Herron Conkling said, “Generations deep at this school . . . Oh, my heart!” 

Lyon, Conkling and their entire family have Malibu’s heart.

There is something Malibuites can do to, in some small way, help Lyon’s family. Malibu local Lynn Saunders emailed this message: 

“There are times in our lives when friends and family ask, ‘What can I do to help out?’ The answer is usually to help them with a meal. When many friends provide support through a meal, Meal Train keeps everyone organized. MealTrain.com provides a free meal calendar tool that makes planning meals among a wide group easy and less stressful.”

For more information, go to: https://mealtrain.com/gk8kr8.