Left to right: Sophia Featherstone, Phillip Featherstone, Lily Hensiek, Sophie Hensiek and Larisa Featherstone with, seated, Carol and Ron Johnston. (photo by Anne Rayner)
Nearly two decades ago, after being diagnosed with leukemia at age 7, Lily Hensiek promised to help other children diagnosed with cancer.
At the time, doctors at Monroe Carell Jr. Children’s Hospital at Vanderbilt explained her diagnosis through a simple analogy. Cancer was like weeds taking over a garden, they told her, and chemotherapy was the tool used to remove them. The idea inspired her family to create the Lily’s Garden Fund, a fundraising effort dedicated to advancing childhood cancer research, training and innovation.
Over the past 18 years, Lily’s Garden has funded pediatric cancer research, programs, lectureships, fellowship training and early-career investigators.
The family recently announced its latest commitment: $5 million to establish the Lily’s Garden Pediatric Leukemia Program at Monroe Carell to support leukemia research, physician-scientist leadership, precision oncology, innovative discovery projects and family-centered care initiatives. This gift brings the family’s total giving to $8 million. Family members have added to Lily’s Garden through personal giving, fundraising events, and the support of friends and community partners.
“We are so incredibly grateful to Lily’s family; they are absolutely amazing,” said Debra Friedman, MD, MS, Director of the Division of Pediatric Hematology and Oncology at Monroe Carell and Deputy Director of Vanderbilt-Ingram Cancer Center.
“This leukemia program will provide us the ability to continue to advance discovery for leukemia and then translate that discovery to patients in the clinic,” continued Friedman, holder of the E. Bronson Ingram Chair in Pediatric Oncology.
A Family Affair
The Lily’s Garden Fund has been a family affair. Joining Lily in the endeavor are her parents, Larisa and Phillip Featherstone; grandparents, Carol and Ron Johnston; and sisters, Sophie Hensiek and Sophia Featherstone.
The family, from Franklin, Tennessee, owns a workplace safety consulting and third-party claims administration firm, Johnston & Associates, which was founded by Ron.
Lily was first diagnosed with pre-B cell acute lymphoblastic leukemia when she was in second grade. At the time, she set what felt like a lofty goal — raising $1 million for childhood cancer research.
“I never imagined when we started the Lily’s Garden Fund that it would go this far or become this big,” said Hensiek, who is now 25. “I’m very thankful that we’ve had the opportunity to do all of this and help support research.”
The family’s philanthropy journey began simply.
“Our first fundraiser was making soap,” said Larisa Featherstone, who also serves as Chair of the Monroe Carell Advisory Board. “Honestly, it felt insurmountable,” Featherstone said. “But it shows how something really small can compound over time, and every bit truly makes a difference.”
A New Era of Discovery
The newest gift is designed to accelerate the rapid progress in research. The gift will support a directorship to help advance pediatric leukemia care throughout the care continuum, including long-term survivorship; it will also create a directorship in cancer predisposition and precision oncology; and it will provide resources for innovative, high-impact research projects.
Hensiek knows firsthand how life-changing research can be. As a teen, she experienced a rare late relapse of acute lymphoblastic leukemia and benefited from an immunotherapy treatment previously unavailable when she was first diagnosed.
“Immunotherapy wasn’t really even a thing when I was 7 years old,” Hensiek said. “It’s really amazing to see how far research has moved forward.”
For the type of leukemia Hensiek had, cure rates have risen dramatically.
“When Lily was first diagnosed, we said there was probably somewhere around 85% to 90% cure,” Friedman said. “Now, with the same leukemia, due to advances, we’re at almost 98%.”
The program will also support mental health and family-focused initiatives — areas the family believes are essential.
“Childhood cancer affects the whole family,” Featherstone said. “It doesn’t just affect the child or the parent.”
A Full-Circle Moment
Today, Hensiek is doing well and preparing for a career in health care. In a full-circle moment, she is studying to be a physician assistant at Kansas State University and will graduate in May 2027. Inspired by the physicians and caregivers who helped save her life, she too hopes to help children with cancer.
She also had the opportunity to do some of her clinical training at Monroe Carell. “It was such a phenomenal experience,” she said. “I’ve been the patient, and now I’ve been the student. That’s kind of wild to think about.”
As Lily’s Garden enters its next chapter, the family hopes the new leukemia program will honor not only Hensiek’s journey, but also the many children and families they have met along the way.
“We just keep going until there’s a cure,” Hensiek said.
