The one-in-a-million cancer was killing her. She got married on the beach and chased her dreams.
When the cancer came back with vengeance last year, the doctors gave her until August to live. Maybe Thanksgiving.
It was January, and Caitlin Engel Kochheiser was still fighting.
She lay in hospice with her husband, Brian, and her mom, Missy, by her side. In two days, she wouldn't be responsive. But for now, she needed their help. She had a niece who would celebrate her fifth birthday in June, and a nephew who would turn two. She wanted to write them birthday cards.
She wrote them each one, but didn’t stop there. She wrote another, then another. Sloane and Charlie will open a birthday card from their aunt every year until they turn 21. They’ll get a letter when they graduate high school, and another when they get married.
To the very end, that's who Kochheiser was.
"She’d be sitting with the nurses asking, ‘What did you do for Christmas? What are you doing on New Year's Eve?’ Here she is dying, and she’s thinking about stuff like that," her father, Chuck, said. “A gal in hospice has been doing this for 39 years. She said Caitlin had the strongest survival instincts of any person she’d ever come in contact with. She would just not give up.”
Kochheiser died on Tuesday, Jan. 25 at the age of 32. A one-in-a-million cancer did its best to destroy her life. But even when she knew there was nothing to stop its spread, Caitlin refused to quit.
“She never knew how to say no,” her father said. “She was not going to go quietly.”
'Life is tough, but you are tougher'
Kochheiser was always small in stature. She was 5-2 and weighed just over 100 pounds. That came with a fiery competitiveness.
She helped Zionsville’s soccer team to a runner-up finish in 2005, and was a three-time all-state selection in track in the 4x800-meter relay. When she got to IU, she walked on to the cross country and track teams.
In 2011, she was a bronze medalist in the steeplechase at Big Ten Championships.
“She was what you want out of a kid who's up against a big challenge,” IU track and cross country coach Ron Helmer said.
After college, she taught at Clay Middle School. In 2016, she joined Carmel’s track team as an assistant coach, working with mid-distance runners.
Her impact extended beyond her running expertise. She’d talk with the girls about reality TV. She’d ask them about their prom dates and their college plans. She’d encourage them when they needed it most.
“She was really good about still including me in our running in our workouts even when I couldn't actually run myself,” said Sydney Haines, now a sophomore at Purdue who suffered an injury as a Carmel junior. “She would always say, ‘Life is tough, but you are tougher.’”
Then came the checkup.
She went to the doctor in July 2018 to get a cyst removed from her ovary. During the procedure, they found what would end up being appendix cancer — which affects 1 in every 1 million people.
Her family couldn’t find anyone with the expertise to treat her in Indianapolis. They went to Pittsburgh, where she underwent a majorly invasive surgery on Oct. 2. It lasted nearly 10 hours.
In the days to follow, Kochheiser described the surgery on her Caring Bridge site by saying that “they took about eight things out.” She described it as “the scariest, but also the best moments of my life.”
“Please keep praying that the cancer is gone forever and it won't come back,” she wrote.
She began chemotherapy in December 2018. Caitlin’s mother, Missy, and Brian would spend hours by her side.
“It was 24-hour treatment,” Chuck said. “We didn’t know if she’d see the other side of that.”
In May 2019, she finished chemotherapy and was declared cancer-free.
“We were all hoping it wasn’t going to come back, but knowing there's probably a 99% chance that it was going to,” Chuck said. “That's the nature of the disease.”
For more than a year, Kochheiser lived the life she dreamed of. She spent time at what Brian says was her “dream job” as wellness teacher. She continued coaching. She would raid the parents’ tents for doughnuts during Saturday morning meets. She went to Holiday World with the cross country team and faced her fear of roller coasters.
“The girls loved being around her,” said Katie Kelly, who coached with Kochheiser. “She was who they wanted to be.”
'It was a dream wedding'
In early 2020, Kochheiser's tumor markers came back high. Later that year, the cancer returned and spread. She underwent another surgery and more chemotherapy, but her husband Brian said doctors determined it would make little difference. She decided to stop treatment.
The next months were filled with “every emotion you can imagine,” Brian Kochheiser said. In the midst of the darkest moments, a beautiful love story continued.
Brian and Caitlin met in October 2016. Their first date was to the Indianapolis Zoo.
“Brian told me that on that first date, he realized that she was the kindest, sweetest person he’d ever met,” Chuck said.
Brian was out of town when he got the call that Caitlin had been diagnosed with cancer. When he returned, they had a hard conversation.
“She said, ‘This is going to be hard. You don’t have to be here for this.’ I didn't even really entertain the conversation. I was going to be there every step of the way,” Brian said. “At that point, I didn’t know what the journey was going to be. But I was optimistic that we’d get this figured out and she'd be cured of it.
“Unfortunately, that wasn't the case. But I wouldn't change anything for the world. The ups and the downs have been a true privilege. We just wish the outcome was a little bit different.”
Caitlin had always dreamed of a big wedding. When it became clear that wasn’t possible, the couple improvised.
“It was important for us to get married in front of our family and really good friends,” Brian said. “We both love the beach, so getting married on Marco Island in the evening was something that was perfect for us.”
Caitlin’s friends flew into Carmel during Fourth of July weekend from New York, Los Angeles and New Jersey for a small bachelorette party. Caitlin couldn’t eat. She couldn’t drink. “She just liked being with her friends,” her dad said.
The couple was married later that month, and spent a week on the Florida island. She had five bridesmaids there, all in perfectly matched dresses — “It looked like they’d planned the wedding for six months,” Chuck Engel said. “They put it together in a week.”
“It was a dream wedding,” Brian said. “It ended up being exactly what she wanted and needed.”
The couple made other trips, to Cape Cod and to see Brian’s family in Michigan. They got dressed up for Halloween, spent Thanksgiving together and went to the Indianapolis Symphony Orchestra’s Yuletide Celebration.
“The little things in life that we often take for granted were things that were really important to her,” Caitlin’s husband said. “Those were things that she wanted to be around for.”
By the end, Caitlin was “a shadow of herself.”
“Watching her suffer, her passing in a lot of ways has been as much relief as it has been sadness,” her dad said. “It was sad to watch her die, but it would've been sadder to watch her continue to do what she was doing for any longer.”
Her family grieves, but is hopeful. Brian said his faith has carried him through the past four years, and said Caitlin’s faith helped her through her worst days.
“We all know she’s going on to a better place,” her dad said. “We all look forward to spending eternity with her.”
Follow IndyStar trending sports reporter Matthew VanTryon on Twitter @MVanTryon and email him story ideas at matthew.vantryon@indystar.com.
This article originally appeared on Indianapolis Star: Zionsville, IU grad Caitlin Engel Kochheiser didn't let cancer stop her
