by Nancy Humphrey

Lily Hensiek’s cancer diagnosis in 2008 has inspired three generations of her family to devote time and financial support to research and training in pediatric cancer. The family has made a new $1 million commitment to endow the Lily’s Garden Discovery Researcher Fund in the Division of Pediatric Hematology and Oncology in the Department of Pediatrics at Vanderbilt University Medical Center.

Lily’s family, Larisa and Phillip Featherstone and Carol and Ron Johnston, made the gift to support fellows and early career investigators in pediatric cancer. The family lives in Franklin, Tennessee, and owns a workplace safety consulting firm, Johnston & Associates.

Support for fellows helps to set trainees on a course for a career of discovery and caring for young people with cancer. However, the transition from a role as a fellow to an independently funded midcareer investigator can be a time of uncertainty. Early-career investigators often need interim funding to get to the next level on their research path.

“We are very grateful to the Featherstone and Johnston family for their unwavering generosity,” said Debra Friedman, MD, MS, director of the Division of Hematology and Oncology and E. Bronson Ingram Chair in Pediatric Oncology.

“Discovery grants are awarded to researchers to test high-risk/high-reward ideas that can lead to big breakthroughs and leverage large-scale funding. Well-timed research support helps ensure senior fellows and other early-career investigators have the resources they need to conduct such studies on emerging treatment options for young cancer patients. This endowed support will provide, in perpetuity, a critical funding bridge so new researchers in academic medicine can continue work while they generate data to apply for large multiyear grants.”

The gift from the family in honor of Lily, now 21 and a student at the University of South Carolina, is a continuation of their past giving to Monroe Carell Jr. Children’s Hospital at Vanderbilt, which totals $3 million.

Lily was diagnosed with pre-B cell acute lymphoblastic leukemia when she was in second grade. At the time her oncologist likened her cancer to weeds in a garden that needed to be removed so the garden can grow and flourish. He told her that chemotherapy was like a weed killer, and that when the weeds died, flowers would grow back in her garden.

“It was such a powerful analogy, and with her name being Lily, it really stuck,” said Larisa, Lily’s mom.

Larisa said she read all she could about leukemia when Lily was first diagnosed. “What I gathered, which led to why we do what we do, is that a lot of discoveries were made by these brilliant young minds who had these bright ideas, sometimes kind of a wild idea, that ended up making a major breakthrough in cancer treatment. One that stuck out to me was the drug doxorubicin, called the ‘red devil’ (a chemotherapy used in treating breast cancer and some leukemias),” she said.

The drug came about from an organized effort to find anticancer compounds from soil-based microbes. A soil sample was isolated from the area surrounding Castel del Monte, a 13th century castle in Italy.

“I found that fascinating,” she said. “I thought about who the person was who thought, ‘Ah, this soil, maybe there’s something special about it that could help with cancer.’ That stuck with me, that a lot of chemos are developed from a natural thing like the periwinkle flower — these wild ideas that end up backed by science, that lead to these medical advancements.”

Larisa said the family’s most recent gift will help fill a need not currently being met — funding the gap between fellowship and receiving national funding to take their research to the next level.

“The idea with our gift is to support these doctors through those initial few years as they get the next innovative idea, to give them the seed money so they can get their feet under them,” Larisa said. “I truly believe that these fresh, bright minds that are so passionate are taking cancer research to the next level. We are giving them that initial seed money to help take their ideas even further.”

The family’s funding trajectory began from a comment Lily made while undergoing chemotherapy. “Lily said that kids shouldn’t have to go through this, that kids her age usually got better quickly with some pink medicine from the pediatrician,” Larisa said. “She said it should be one pill, and I told her, ‘That’s a great goal. Let’s try to do something about it.’”

Initially Lily mentioned a goal of $100. “I told her we could go higher, and she set it for $1 million,” Larisa said.

Through community fundraisers and individual donors, the family reached their $1 million goal and established the Lily’s Garden Research Fund and the Lily’s Garden Endowed Lecture in Childhood Cancer.

Lily’s Garden has supported guest lectures and research opportunities for early-career clinician-investigators and fellows in pediatric hematology/oncology. In 2018 the family endowed a fellowship in pediatric oncology, the Lily’s Garden Fellowship.

In addition to their financial support, the family is also deeply involved as volunteers. Larisa serves as chair of the Monroe Carell Advisory Board, and Lily, who won a Mary Catherine Strobel Volunteer Award in 2019 for her work with Monroe Carell, has advised the hospital on improving facilities for adolescent and young adult cancer patients. She and her sister, Sophie, have modeled at Friends & Fashion and helped determine how funds from the family’s gift will be spent.

“Our program sees almost one new childhood cancer diagnosis a day — about 300 children each year. Through research, training and clinical programs, significant advances have been made in improving survival and outcomes for children with cancer. We are dedicated to making sure every child survives,” said Steven Webber, MBChB, MRCP, pediatrician-in-chief, chair of the Department of Pediatrics and James C. Overall Professor. “A transformative gift like the Lily’s Garden Discovery Researcher Fund helps our early-career clinician-investigators translate important discoveries into personalized, cutting-edge treatments that enhance care for childhood cancers. We can’t thank the Featherstone and Johnston family enough for their continued commitment and support.”

After a relapse in 2016, Lily is doing well.

“Lily is an amazing young woman,” said her grandmother, Carol Johnston. “She loves her family and friends wholeheartedly. I will always remember when she was in second grade, she’d get out of the shower and rub sparkly lotion on her sweet bald head. She is uniquely herself — and that’s a wonderful thing. Our family will never take good health for granted because we know firsthand how quickly things can change. We will always have a special place in our heart for Monroe Carell Jr. Children’s Hospital at Vanderbilt because of the wonderful doctors and nurses there who took such good care of our precious Lily.”

Her grandfather, Ron Johnston, said Lily’s diagnosis in 2008 was a shock to their family. “It changed us forever,” he said. “Childhood cancer had not been on our radar previously. We learned of the small percentage of research money that was being used to learn more about how to treat childhood cancers more safely and effectively. We hope the Lily’s Garden fellows and early-career investigators will explore outside the box of traditional cancer treatments. We know there is a cause and a cure for childhood cancer out there somewhere, and we want to do all we can to make Lily’s dream of a quick and sure cure come true. Just think what a wonderful day that will be.”

Lily said she is thankful her family has decided to continue raising money for childhood cancer.

“I think that after my experiences, my family and I both want to raise money to help ensure that there is a better treatment for cancer in the future because the current treatment and life-changing experience is something that no child or family should have to go through,” she said. “My family and I have always thought that the future is the fellows and other future doctors. Their innovative ideas and research, in our opinion, is what is going to truly help in curing cancer. So, our hope with this new fund is to help those amazing ideas on how to treat it come to life and hopefully find something that will help cure cancer.”