When the cancer returned with vengeance last year, doctors gave her until August to live. Maybe Thanksgiving.
It was January and Caitlin Engel Kochheiser was still fighting.
She stayed in a hospice with her husband Brian and her mother Missy by her side. In two days, she wouldn’t be responsive. But for now, she needed their help. She had a granddaughter who would have celebrated her fifth birthday in June and a grandson who would have turned two. She wanted to write them birthday cards.
He wrote them each, but it didn’t stop there. She wrote another, then another. Sloane and Charlie will open an aunt’s birthday card every year until she turns 21. They will get a letter when they graduate from high school and another when they get married.
Until the end, that’s who Kochheiser was.
“She was 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 is thinking about things like that, “her father Chuck said. “A girl in a hospice has been doing it for 39 years. He said Caitlin had the strongest survival instinct of any person she ever came in contact with. She wouldn’t give up. “
Kochheiser died on Tuesday 25 January at the age of 32. One in a million cancers did their best to destroy her life. But even when she knew there was nothing that could stop her from spreading her, Caitlin refused to stop.
“He never knew how to say no,” said his father. “She wouldn’t have gone quietly.”
‘Life is tough, but you are tougher’
Kochheiser has always been small in stature. He was 5-2 years old and weighed just over 100 pounds. This came with a fiery competitiveness.
She helped the Zionsville football team reach second place in 2005 and was selected three times for all states on the track in the 4x800m relay. When she got to the UI, she went to the cross country and track and field teams.
In 2011, she was bronze medal in the obstacle course at the Big Ten Championships.
“It was what you wanted from a guy who is facing a big challenge,” said Ron Helmer, IU’s track and field coach and cross country.
After college, he taught at Clay Middle School. In 2016 she joined Carmel’s track team as an assistant coach, working with middle distance runners.
His impact went beyond his running experience. She talked to reality girls. She would ask them about their prom dates and their college plans. She would encourage them when they needed it most.
“She’s been really good at still including me running in our workouts even when I couldn’t really run alone,” said Sydney Haines, now a sophomore at Purdue who suffered an injury as Carmel junior. “She always said: ‘Life is hard, but you are harder'”.
Then came the check.
She went to the doctor in July 2018 to have a cyst removed from her ovary. During the procedure, they discovered what would become appendix cancer, affecting 1 in 1 million people.
Her family could not find anyone with the experience to treat her in Indianapolis. They went to Pittsburgh, where she underwent a very invasive surgery on October 2nd. It lasted almost 10 hours.
Over the next few days, Kochheiser described the surgery on his Caring Bridge website saying they “took out about eight things.” She described it as “the scariest, but also the best moments of my life”.
“Please keep praying that the cancer is gone forever and won’t come back,” he wrote.
She began chemotherapy in December 2018. Caitlin’s mother Missy and Brian spent hours by her side.
“It was a 24-hour treatment,” Chuck said. “We didn’t know if he would see the other side of that.”
In May 2019 she finished chemotherapy and was declared cancer free.
“We all hoped he wouldn’t be back, but knowing that there’s probably a 99% chance he would,” Chuck said. “This is the nature of the disease.”
For more than a year, Kochheiser lived the life he dreamed of. She has spent time in what Brian says is her “dream job” as a wellness teacher. She continued to coach. She allegedly broke into her parents’ tents for donuts during Saturday morning meetings. She went to Holiday World with the cross country team and faced her fear of roller coasters.
“The girls loved being with her,” said Katie Kelly, who trained with Kochheiser. “She was what they wanted to be.”
‘It was a dream wedding’
In early 2020, Kochheiser’s tumor markers are back high. In the same year, the cancer returned and spread. She had another surgery and more chemotherapy, but her husband Brian said the doctors determined that it would make little difference. She has decided to stop the treatment.
The following months were filled with “every emotion you can imagine,” said Brian Kochheiser. In the midst of the darkest moments, a beautiful love story continued.
Brian and Caitlin met in October 2016. Their first date was at the Indianapolis Zoo.
“Brian told me that on that first date, he realized he was the kindest and 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 came back, they had a difficult conversation.
“He said: ‘It will be difficult. You don’t have to be here for that. ‘ I didn’t even entertain the conversation. I would 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 would work it out and she would be cured.
“Unfortunately, this was not the case. But I wouldn’t change anything for the world. The ups and downs were a real privilege. We just wish the result were a little different. “
Caitlin had always dreamed of a great wedding. When it became clear that this wasn’t possible, the couple improvised.
“It was important for us to get married in front of our family and our good friends,” said Brian. “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 to Carmel over the 4th of July weekend from New York, Los Angeles, and New Jersey for a little bachelorette party. Caitlin couldn’t eat. She couldn’t drink. “She just liked being with her friends of hers,” said her father.
The couple married later that month and spent a week on the island of Florida. She had five bridesmaids there, all in perfectly matching dresses- “It looked like they had been planning the wedding for six months,” Chuck Engel said. “They put it together in a week.”
“It was a dream wedding,” said Brian. “It ended up being exactly what he wanted and needed.”
The couple made other trips, to Cape Cod and to see Brian’s family in Michigan. They dressed up for Halloween, spent Thanksgiving together, and went to the Indianapolis Symphony Orchestra’s Christmas celebration.
“The little things in life that we often take for granted were things that really mattered to her,” said Caitlin’s husband. “Those were things she wanted to be around for.”
In the end, Caitlin was “her own shadow”.
“Watching her suffer, her death in many ways was as much relief as it was sadness,” said her father. “It was sad to see her die, but it would have been even sadder to see her continue doing what she was doing for a long time to come.”
His family is grieved, but hopeful. Brian said his faith has carried him over the past four years and said Caitlin’s faith has helped her through her worst days.
“We all know he’s going to a better place,” said his father. “We can’t wait to spend eternity with her.”