When 18-year-old Lilian Schaffer wrapped up her final round at the Spring in the Rockies (Colorado) Horse Show in May 2018, she did what she always does. She gave her horses a huge hug and a kiss and prepared them for the return trip to Serenity Farm in Elizabeth, Colorado. But this wasn’t just any horse show for Schaffer—it was a triumphant public return to the sport she most loves after a year of challenge and adversity.
Just about one year earlier, Schaffer developed a fever and cough, and her mother, Alison Schaffer, chalked it up to a virus. But over the summer, Lilian started to feel worse. Since she’d always been healthy she tried to just push through it.
By the fall, while Lilian’s classmates were worrying about college admissions essays and homecoming dances, Lilian’s attention was on platelet counts and PET scans. She was diagnosed with stage llB bulky Hodgkin’s lymphoma.
And while Lilian and her family received support from a wide variety of places—including Adam “Pacman” Jones, a former cornerback for the Denver Broncos, who has been a family friend since Lilian was little—it was heading to the barn every day after her chemotherapy treatments that Lilian credits for helping her to get through. There, she spent time with three therapists: her horses Especial, Shareef and Trey.
“It’s Just Anxiety”
Arriving at the cancer diagnosis wasn’t a straight line. Though she was healthy enough to show during the summer of 2017, her trainer Kelli Clevenger could tell something was wrong.
“She was thin, almost gaunt,” said Clevenger. “She is a very dedicated rider, but she had had some bad experiences prior to coming here. She didn’t have a real sense of self-esteem. She was pretty beat up when we got her, and she wasn’t feeling good. It was hard to tell what was causing it.”
At one show, Lilian came out of the ring and her calves were itching so badly that she had to dismount and take off her boots. She attributed it to a combination of summer heat and tight riding clothes, but the itching persisted and then got worse.
“Her pediatrician thought it was because of anxiety,” said Alison. “But she couldn’t sleep, or function normally, or wear normal clothes. The pediatrician referred her to a dermatologist, but Lilian felt strongly it was not a skin thing. There was no rash.”
Soon, Lilian’s daily goal was to function long enough to make it to the barn to ride. As soon as she was done, she would rip off her layers to relieve some of her discomfort.
They went to the emergency room and were sent home with breathing exercises. Next they were referred to an allergist who told them Lilian might be allergic to hay. Meanwhile, Lilian’s symptoms intensified. The itching was distracting, and she felt nauseous and weak.
“I think that initially because there was no visible reason for the itching, her pediatrician and others lazily chalked it up to anxiety,” said Alison. “Or being a stressed-out senior in high school.”
On the morning of Oct. 27, 2017, Lilian woke up with a fever of 105, in full body pain and with a swollen neck, and she couldn’t get out of bed. “She had a rash around her eyes,” said Alison. “We went back to the emergency room, and they pulled nearly 30 vials of blood. The doctor there thought she had lupus.”
The Schaffers were referred to a rheumatologist at Children’s Hospital in Aurora, Colorado. That specialist took one look at Lilian’s blood work and saw something telling—a white blood cell count of 25,000. Lilian was sent for even further testing, and someone whispered a word that sent chills down their spines. Cancer.
“But we didn’t think she could have cancer,” said Alison. “Lili said to me, ‘We have been to so many doctors; someone would have thought of that.’ ”
The next day, the doctors turned a computer screen around to reveal an image of Lilian’s chest. It glowed in red and yellow, the manifestation of cancerous masses that pressed on her veins, arteries, heart and lungs. She was admitted immediately and stayed for a week.
“It was so shocking,” said Alison. “But in a few hours we almost felt relief. She had really been suffering, and now we had an answer. Knowing what we know now, a hallmark symptom of Hodgkin’s lymphoma is itching with no rash. It is the most common cancer in teenagers 15 to 19 years old. So it boggles the mind that over half a dozen doctors didn’t think to give her a simple chest X-ray to rule it out.”
Lilian underwent three surgeries during her stay and began chemotherapy on Nov. 1, 2017. “It was a little surreal,” said Lilian. “I didn’t process it. I just did it.”
When she was diagnosed, Lilian was down to 99 pounds. Because she was misdiagnosed for so many months, her cancer had progressed to the higher risk stage IIB bulky, meaning that she showed all of the classic symptoms and that the mass took up more than one-third of her chest. It also meant she had to be treated with the maximum doses of chemotherapy and radiation.
For the next six months, Alison and Lilian made the drive from their home in Denver to Aurora for treatment, and then on to Elizabeth and her beloved horses. For the first two months, Lilian suffered few side effects from the chemotherapy. Compared to how she had been feeling, she almost felt better. But then her hair began to fall out, and the steroids that were part of her treatment added nearly 30 pounds to her slender frame. When she looked in the mirror, the reflection seemed unfamiliar. Lilian, who was ahead on her high school credits, dropped all but three of her courses and put her focus nearly 100 percent onto her horses.
“She would be nauseous and have all this fluid in her from the chemo,” said Alison. “And then we would get to the barn, and she would ride. She would swear that it made her feel better.”
“My horses brighten my day every day,” said Lilian. “They made me forget about everything.”
A Semblance Of Normal
For Lilian, heading to the barn every day meant that at least one aspect of her life remained normal. At the barn, even if she didn’t feel strong, she could put her helmet on and not look different.
“We could not have done this without the horse community, in particular, her relationship with Kelli,” said Alison.
When Lilian was still in the hospital, Clevenger sent a video taken from Trey’s back, heading out on a trail ride. “Here is Trey, who is this retired horse that is not in a training program, and she had taken him out for Lili,” said Alison. “It made the biggest difference in Lili’s day.”
Clevenger helped keep “Special” and “Neptune” tuned up with training rides a few times per week, and the staff groomed and prepped the horses for Lilian, chores she normally enjoys doing herself. Clevenger also paid close attention to Lilian’s energy level and made each ride count.
“I never wanted her to feel when she was too ill to ride or take a lesson that there was anything wrong with that,” said Clevenger. “We did what she could do. Some days that was 10 minutes, on others she could walk, trot, canter and jump.”
Most days, Lilian would go to her chemotherapy wearing her boots and spurs. “The doctors and nurses liked to see her living her life,” said Alison. “That is not something they get to see all the time. Going to be at the barn felt normal. It was an escape for her, and it changed her mood right away.”
Between snuggles with Trey, a rock-steady partnership with Neptune, and Special pulling off her hat and licking her bald head, each of her horses helped Lilian heal in their own way.
“She rode every single day during her illness, even on days she probably shouldn’t have,” said Clevenger. “It was the one thing that kept her going.”
Focusing On The Now
Lilian had her final treatment on May 10, 2018, the day before her senior prom. She graduated with her class a week later.
“From when she was really little, Lilian has always picked one thing and wanted to learn everything about it,” said Alison. “When it comes to horses, she draws them; she rides them; they are her best friends. She was too shy to play games or do other sports, and in horses, she has chosen the hardest sport there is for someone with anxiety. There is no control over any of it. But that is just who she is—she always chooses to do the hard thing.”
Facing cancer brought out traits that her family always knew Lilian possessed—resilience, determination and a strong work ethic. But it also empowered her and has propelled her in directions she never saw herself going. The Leukemia & Lymphoma Society Rocky Mountain chapter named Lilian a 2019 Honored Hero, which led to TV interviews and speaking in front of large audiences.
“If you knew her, she was so shy and quiet; this is so amazing,” said Alison. “But she is trying to spread awareness. She was such a healthy kid; if it can happen to her, it can happen to anyone.”
Looking forward, Lilian is starting to apply to colleges that offer strong math and art programs.
“I think that no matter where she goes she will have her horses with her,” said Alison. “It may sound indulgent or spoiled, but it really isn’t. It is essential. Her physical and mental health depends on it.”
Lilian’s cancer is currently in remission; in just a few weeks she will have a six-month scan, and if that is clear, will remain under regular monitoring. While the fear of a recurrence lingers in her mind, Lilian is trying to focus on the here and now.
“It’s made me a lot more positive for sure,” said Lilian. “I used to focus on the negative stuff sometimes. But I couldn’t do that while I was sick, because it was too overwhelming. Surviving cancer puts things into perspective. It makes you focus on the positive things in life.”
Do you know a horse or rider who returned to the competition ring after what should have been a life-threatening or career-ending injury or illness? Email Kimberly at firstname.lastname@example.org with their story.