Luke Horton sits at a table in front of the coffee shop at Morris Library. He is still wearing an orange tie-dye wristband that says “EmSettStrong”. He’s back on the campus where he and his girlfriend Emily Settle met in 2015. His eyes look like they are ready to tear up at a moment’s notice. It’s been thirteen days since Settle’s  five and a half year long battle with cancer finally ended.

Around 9:45 a.m. on the morning of Sept. 19, Settle took her final breath surrounded by her parents Mike and Sandy Settle, her sister Paige Palmer, and her boyfriend of five years Luke Horton. In her final month, Settle set up a fundraiser with her family to help raise money for travel costs and day to day needs for cancer patients in her home state of Indiana.

The Emily Settle Fund benefits people just like her; young adults in the 20-39 age range. But unlike Settle, many cannot afford the burdens that come with cancer treatment. While insurance may pay for treatments or clinical trials, peripheral costs often create financial problems for families already dealing with the toughest battles they will fight.

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“She was pretty focused on wanting to give back to folks that were on this journey and to try to make it as easy as possible for them so they can focus on getting better,” said her father, Mike Settle, President of the Emily Settle Fund.

‘They think it might be cancer’

2015 marked an inflection point in Emily Settle’s life. She had graduated from Westfield High School in Westfield, Indiana in May, and chose Southern Illinois University to continue her studies. She wanted to be a dental hygienist, and SIU was one of the only 4-year universities in the area to offer that for her. Settle was also a student-athlete.

Her father had run cross country at Ball State University. Now, the 18-year-old girl was going to become a second-generation collegiate runner.

“I met Emily, cause we were both on the track and cross country team here, and we instantly hit it off and that’s kinda where our relationship started,” Horton said. He was a sophomore that season, running in the 400 meter, 800 meter and mile events.

Settle’s life was going smoothly. In January 2016, she and Horton officially started dating. She had also made other friends during her short time at Southern Illinois, relationships that she would carry with her half a decade later.

“She was just kind of the typical teenage girl that loved spending time with her friends, and teammates, with her older sister Paige,” Mike Settle said.

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Her life took a sudden turn that spring. In late April, Settle talked about feeling fatigued after workouts and running, aches and pains becoming a regular occurrence. After an April 29 meet in Edwardsville, Settle felt especially bad.

“I remember her mentioning to me, she goes ‘Dad, I did not run very well’. She goes ‘I was very tired’, and I said ‘well, yeah, that can happen’,” Mike Settle said.

Horton said, “[W]e talked to her mom, and her mom thought she had symptoms of meningitis. And so her mom told us to take her to the health center over here at the rec. I took her there and I dropped her off and within like an hour she called me, she was like ‘hey, can you give me a ride to the hospital? They think it might be cancer.’”

On May 3, 2016, Emily Settle’s cross country career came to an end. Her focus wasn’t on her athletics though; there were more important things to worry about in that moment. She would be diagnosed with Acute Lymphoblastic Leukemia.

“It definitely escalated quickly,” Mike Settle said. ”It just went from ‘man I don’t feel good’ to ‘you’re fighting for your life’.”

‘We thought she was gonna die. She should have died that weekend.’

A few days after her diagnosis, Emily Settle had planned to go back suburban Indianapolis home, where she could continue to be treated. However, those plans were scrapped by Friday morning.

“She got so bad through the night Thursday night into Friday morning, the doctors said she can’t tolerate a five hour drive back to Indianapolis, so we’re taking her by ambulance to St. Louis,” Mike Settle said.

After a few days in Carbondale, Emily was taken to the Alvin J. Siteman Cancer Center in St. Louis. There, she was admitted to the Intensive Care Unit. Doctors had given Emily Settle a small chance of survival, ranging in the 15-20% range.

“We thought she was gonna die. She should have died that weekend,” Horton said.

Mike Settle said, “We’re convinced that if she wasn’t a runner and wasn’t in such good physical shape when she was diagnosed, she probably wouldn’t have survived the initial diagnosis.”

Despite the odds, Emily pushed through. She would spend the rest of 2016 in St. Louis, including six weeks in the ICU. During her stay, she would have to learn to walk again. Once a collegiate distance runner, Emily Settle was now just trying to take small steps forward.

Her parents would take turns making the trip from their home in central Indiana to visit her in St. Louis. While the trip was manageable for the Settle family, the cost of seeing their daughter was climbing with every passing month.

“Luckily, my wife and I were able to alternate weeks in St. Louis,” Mike Settle said. “We can drive, but we had to get some lodging for eight months in St. Louis while Emily was getting treatment.”

Horton said, “I was able to go up there a lot and be with her a lot at that time when she was in St. Louis. Like, I was up there every weekend, and when I didn’t have class I was up there.”

As her circumstances had drastically changed, so too did Emily Settle’s ambitions. Her experiences in St. Louis inspired her to follow a new path in her life.

“She kinda shifted to what she wanted to do from a dental hygienist to a nurse, and she wanted to work in an oncology unit,” Mike Settle said. “Then as she progressed and she wasn’t able to get all of her physical, like hand-eye coordination, […] and she was immunocompromised […], so she shifted from nursing to social work. She wanted to be a social worker for a palliative care team at a hospital, helping cancer patients.”

‘She loved tie-dye, and so we all wore tie-dye ribbons’

The weekend of May 13, 2016 saw the Saluki track and cross country team compete in the Missouri Valley Conference Outdoor Championships in Terre Haute, Indiana, just 90 minutes  away from Settle’s hometown. She wasn’t in Westfield though, nor was she with the team on the Indiana State University campus. Settle was two states away at Barnes-Jewish Hospital in St. Louis.

“[S]he got sick just weeks before the Missouri Valley Conference meet. That was really hard for the team,”  said Kathleen Raske, then-Director of Track and Field/Cross Country.

In Settle’s honor the team wore tie-dye ribbons on their uniforms, and dedicated their performances that weekend to her. Raske, speaking after the event, discussed the team’s success during a difficult time.

“Overall, we were faced with a lot of adversity and stress surrounding our team,” Raske said. “We talked all throughout this weekend about being Saluki strong.”

Horton qualified for the 800 meter run on May 14, and placed fourth in the final race the next day. The team overall finished second in men’s events and third in women’s.

“I just remember that was a very emotional meet and one that I didn’t even want to race at all because I could only think about Emily and how I wanted to be there with her in St. Louis,” Horton said. “The only reason I raced at that meet was because I knew Emily would be mad if I missed that meet, so I wanted to do well for her.”

‘It seemed like she would beat it and then six months later it would come back’

Typically, leukemia patients will go into remission after a few months of chemotherapy. However, young adults tend to have leukemia cells that are less sensitive to chemo. In Settle’s case, when chemotherapy didn’t get the job done, doctors opted for a stem cell transplant in November.

She was finally able to return home in January 2017. Back in Indiana, Emily would be visiting Riley Children’s Hospital in Indianapolis to check up on her health.

Jodi Skiles is the Medical Director of the Stem Cell Transplant and Immune Cell Therapy Program at Riley Children’s Hospital. She worked with Settle starting in 2017, when she first went to get a status update after her transplant.

“She had had a stem cell transplant, and was transitioning home for what was believed to be ongoing care in remission,” Skiles said. “And then she had her first surveillance bone marrow done after transplant here, just to look and make sure everything was fine. She wasn’t having any symptoms at all, and her count looked fine, but when we did that marrow, she had evidence of persistent disease post-transplant.”

Settle had her first relapse in May 2017. While her 2016 was mostly spent at Barnes-Jewish, an adult hospital, her next year saw her treatment done at Riley, a children’s hospital. Skiles says that difference is vital for young adults.

“If that population of patients (ages 15-39) with leukemia is treated on an adult protocol, their overall survival is about 30%. If they’re treated on a [pediatric] protocol, their survival is about 70%,” Skiles said.

The decision for Settle to go to Riley in 2017 came on a chance encounter. Her mom Sandy Settle was in a book club with the wife of a doctor at Riley. When she discussed her daughter, who at the time was planning on transitioning home to Indiana, she was recommended to go to Riley based on early research that showed young adults having better treatment and survival rates on pediatric protocols.

In July, her hometown of Westfield put together a community event called EmFest. It was attended by an estimated 600 people and raised nearly $21,000 towards helping the Settle family. The success of the fundraiser would inspire a second event in 2018, with the proceeds going to another cancer patient and Westfield graduate.

Throughout 2017, Emily was attempting to get into clinical trials for Kymriah, the brand name for a CAR T-cell therapy that was in the process of being approved by the FDA.

“It wasn’t our goal to cure her, it was just our goal to keep her stable,” Skiles said.

As her leukemia progressed, doctors began treating Settle with Blinatumomab, which caused her to have a seizure, making her ineligible for Kymriah. With the option of clinical trials out the window, Settle underwent a second stem cell transplant on January 31, 2018. In a 2019 Facebook post, she would refer to this day as her “second birthday”.

Her leukemia would return in April 2019, however. In July, she was able to participate in CAR T-cell therapy in Seattle. While this treatment sent her cancer into remission, her T-cells only lasted for three of the expected six months. In March 2020, she relapsed again, prompting another CAR T-cell therapy in Palo Alto, California. in May. That again only lasted a few months, with another relapse in September. Emily had one more trip to Seattle in November, but for the third time, she had relapsed a few months after CAR T-cell therapy.

“It seemed like she would beat it and then six months later it would come back,” Horton said.

Emily had her fifth relapse in February 2021. This time, routine chemotherapy was used to treat Emily, as there were no CAR T-cell trials available at the time. She responded well and managed to get into remission again.

During this final remission, the Settle family had planned to make a trip to Hawaii in July through Nick’s Wish, a Make-a-Wish style organization dedicated to granting wishes to young adults who had aged out of Make-a-Wish. In response to these plans, doctors at Riley tried to lower Settle’s dosage of medicine.

“We were trying to make it so that she wouldn’t need transfusions while she was there and could actually enjoy her time instead of spending so much time in the hospital,” Skiles said.

Settle’s next cycle of treatment was given at 50% dosage, but it proved ineffective. In June, Emily relapsed for the final time. The Hawaii vacation plans were scrapped, but more importantly it showed Settle would need continued treatment. Another cycle of full dosage began, but she got an infection on the first dose, which landed her in the hospital. She recovered, but the same thing happened on the next dose.

‘You could see it took something from her each time. She got weaker and weaker.’

Settle’s options were limited. There were no clinical trials she would qualify for due to her physical health, and the regular treatment she was on would be temporarily effective against leukemia but repeatedly came at the cost of her health.

“Even at the end when we decided to transition her to hospice, it was not really a situation of her saying ‘I’m done, I don’t want to do this anymore’. It was us saying ‘we don’t have anything different or new to offer you’,” Skiles said.

Settle’s fighting spirit continued, but when it became clear that there weren’t any new treatments on the way, the focus shifted to improving her quality of life.

“She was willing to accept that, logically it made sense to her, but from her perspective, she was willing to keep doing this,” Skiles said.

Horton said, “The only problem was every time it would knock her down, you could see each time, she was weaker and weaker, from all the treatment and all the different stem cell transplants and clinical trials. Every time it came back, you could see it took something from her each time. She got weaker and weaker.”

Even through her near-constant battle with cancer, Settle’s attitude rarely waned. She was still always the most vibrant person in the room.

“Probably the most positive person I’ve ever met,” Horton said. “Even, you hear all this, she was still always the most positive, like upbeat, and still smiling and still finding ways to laugh at herself and everyone else. Every time we found out she had relapsed, I would be the one so upset and negative, and she’d be the one cheering me up.”

Mike Settle said, “Emily was just one of those folks that she made life-long friends in St. Louis, and Seattle, Indianapolis, wherever she was being treated she just loved the nurses, the doctors, the cleaning staff. It didn’t matter who it was, she was always very thankful and appreciative for the people that were helping her.”

Horton said Emily Settle found reasons to keep laughing throughout.

“When she first lost her hair, obviously she was upset and crying, but she’d start making fun of herself for being bald. She always found the humor in things,” Horton said.

‘On her literal deathbed, she’s thinking of helping others’

Emily Settle’s battle finally ended after five and a half years, on Sept. 19. Soon after, the outpouring of support came in.

“When she passed, we got texts from the coaches, a lot of her teammates came to her service, we’ve got a jersey in a frame that we can hang up with one of her track pictures. It meant a lot to my wife and our other daughter. It’s very humbling,” Mike Settle said.

Throughout the final years of her life, Emily Settle became an advocate for fundraising for cancer patients. In addition to EmFest, she had gotten involved with the Leukemia and Lymphoma Society. In August 2018, Emily helped raise over $1,500 towards the LLS. Every October, she would participate in the annual Light The Night fundraising event.

As her final years, months, weeks approached, Settle decided she was going to do what she could to help those in need.

“Especially as she saw that she wasn’t going to be cured here on Earth, she goes ‘let’s really start pulling this together’,” Mike Settle said. “So we sat down, probably over the last couple months, and just wrote down things that she wanted this fund to accomplish, and one of the main things was the financial assistance for travel.”

Having made multiple trips across the country during her journey, and through meeting many patients and learning of their experiences, Emily Settle understood the importance of financial security when loved ones are fighting their toughest battles.

“Luckily, she was very fortunate her family could afford most of those things, but most people can’t do that,” Horton said. “And if that was Emily, she would have been dead four years ago.”

“You want to get to the best clinical trial or treatment for a cure, for remission, and definitely don’t want money to dictate if that’s possible or not,” Mike Settle said.

She was able to see the launch of The Emily Settle Fund. She saw the website, and the logo, and all the details get set up in the same way she saw all of her other fundraising efforts launch. Her efforts  have and will continue to have lasting impacts even after her death.

“I think that speaks to what kind of person she was,” Horton said. “On her literal deathbed, she’s thinking of helping others and thinking of ways she can continue to have an impact. She wasn’t throwing herself a pity party, she was thinking ‘how can I help other people’.“

Mike Settle said, “It’s definitely been comforting to know that her inspiration, her legacy if you will, will continue. It’ll continue to help people as they’re going through some difficult times.“

‘That’s what she’s gonna be remembered by […] because that’s how she was’

Horton’s eyes roam around the room as he is searching for words. Weeks after his girlfriend’s death, it’s still difficult to verbalize everything.

“That’s what she’s gonna be remembered by, and that’s what she should be because that’s how she was,” he said.

Horton, now a law school student at Southern Illinois University, reflects on the past five years of his life. In a way, Settle’s death brings an abrupt end to a long chapter in his story. But from his point of view, he was blessed to have spent as long with her as he did, considering how bleak things looked in May 2016, and how difficult times have been since.

“Really, this whole last five years are just bonus. You know what I mean? It was just extra, like icing basically, a bonus.”

The orange tie-dye wristband on Horton’s right hand keeps peeking out from under his long sleeve. It’s raining outside, the first rain in Carbondale in recent memory.

“The main thing that’s getting me through this all is just knowing that her body is fully healed. […] It was really rough this last month. She was in so much pain. Every day was just a struggle, and she was so weak. Her body had gotten so weak,” he said. “I know now that she’s no longer in any pain. She’s probably running again, doing the things she couldn’t do over the last five years.”

Staff reporter Brandyn Wilcoxen can be reached at [email protected] or on Twitter at @Brandyn_2020

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Tags: SIU, Salukis, Athletics, Carbondale, Track and Field, Cross Country, Emily Settle, Mike Settle, Luke Horton, Kathleen Raske, Jodi Skiles, Brandyn Wilcoxen

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