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Patient’s indomitable spirit makes Lily’s Garden grow

Sep. 20, 2018, 9:47 AM

Lily Hensiek, 17, who has leukemia, and family created two funds to support pediatric cancer research and training at Monroe Carell Jr. Children’s Hospital at Vanderbilt through community fundraisers and individual donors. (Photo by Susan Urmy)

by Christina Echegaray

When Lily Hensiek was diagnosed with pre B cell acute lymphoblastic leukemia 10 years ago at age 7, her doctor likened the cancer to weeds that had taken over her garden of cells. Chemotherapy would remove the weeds — the bad cancer cells — to allow her garden to grow and flourish.

Hearing this, Lily thought about other children who had been diagnosed with cancer, who needed their weeds plucked and their garden nurtured. She would raise $100 for the cause, she declared.

Her mother, Larisa Featherstone, challenged her to think bigger. So, Lily set an ambitious goal of $1 million.

Never wavering, Lily, now 17 and a senior in high school, surpassed her $1 million goal, through community fundraisers and individual donors, to create two funds to support pediatric cancer research and training at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Lily fittingly named them the Lily’s Garden Endowed Lecture in Childhood Cancer and the Lily’s Garden Research Fund, supporting guest lectures and research opportunities for junior faculty members and fellows in pediatric hematology/oncology. Most recently, her family established a separate endowment to fully fund a named fellowship.

“It felt great to reach the goal, but I knew that I wanted to keep moving forward until there was a cure for childhood cancer,” Lily said. “I knew it wasn’t just about a dollar amount.”

The Lily’s Garden fund has been a family affair. The family, from Franklin, Tennessee, owns a workplace safety consulting firm, Johnston & Associates, and has been able to add to the money that is raised through events. Lily’s grandfather, Ron Johnston, founded the company.

Joining Lily in the endeavor are her sister, Sophie Hensiek, stepsister, Sophia Featherstone, and stepfather, Phillip Featherstone, along with her mother and her grandparents, Carol and Ron Johnston.

As the family worked together to bring awareness to pediatric cancer, Lily finished her treatment in February 2011 and continued to receive frequent checkups.

Their involvement with pediatric cancer has extended well beyond fundraising. Larisa serves on the Children’s Hospital Advisory Board while Lily and her sister, Sophie, have modeled multiple times at the Friends of Children’s Hospital’s Friends & Fashion show.

Five years had passed since Lily’s last treatment when the family was hit with unexpected news in 2016. Lily was playing her last volleyball game of the season. Her mother was worried about her health.

“I thought, ‘she doesn’t look quite right,’” Larisa said. “She was pale, she was bruising easily. She was really tired and had back pain and fevers. And normally, that might not be a concern — unless your child has had leukemia.”

About 24 hours later, blood test results revealed Lily’s leukemia had returned. Larisa was shocked.

“I was in disbelief,” Larisa said. “You know it can happen. We had gotten so far out from the end of her first treatment. It wasn’t in the forefront of my mind. I felt a lot more anger the second time around. It had taken so long for her to recover, to catch up academically and mentally to get where people didn’t see her as a cancer kid.”

Lily entered this round of chemo with even more determination than the first time. Being older, she was more keenly aware of the cancer experience as a teenager and its challenges.

At the same time, she had her eyes set on things important to her: family, her future and a goal to become an oncology nurse.

While she has always been actively involved in the Lily’s Garden fundraising efforts, now more than ever, she was resolute to have greater hands-on involvement. Lily has been part of an advisory group looking at ways to improve hospital facilities for adolescent and young adult cancer patients.

With the initial fundraising goal reached, the family pondered their next philanthropic gift. Working with Children’s Hospital, they established the Lily’s Garden Fellowship in July.

“Support from Lily’s Garden has made a real difference in our mission to improve the lives of children with cancer through research, clinical care and education. An essential part of that mission is to train our pediatric oncology fellows, the leaders of the future. Our fellows provide exceptional and compassionate care, develop close interactions with patients and families, conduct important research and educate,” said Debra Friedman, MD, who holds the E. Bronson Ingram Chair of Pediatric Oncology and is director of the Division of Pediatric Hematology/Oncology.

“The Lily’s Garden Fellowship will support the future of pediatric oncology, by supporting the training of our fellows, the leaders of that future. We are thrilled to have Dr. Brianna Smith as our inaugural fellow. She exemplifies all the qualities for this endowed fellowship: compassionate care of patients and families, devotion to teaching and commitment to research,” Friedman continued.

As the first Lily’s Garden fellow in pediatric Hematology/ Oncology, Brianna Nicole Smith, MD, MS, will conduct research focused on novel therapies for leukemia and better treatment options with fewer side effects.

“I will be able to become a better researcher and physician because of the Lily’s Garden Fellowship,” Smith said. “The extra training opportunities that are possible because of this fellowship will make a long-lasting impact on the field.”

As Lily knows too well, chemotherapy and other cancer treatments are hard on the body.

“I was much younger the first time I was diagnosed, and I don’t really remember much,” said Lily.

The treatment protocol after a relapse is more complex and involved, and she has experienced more reactions to her treatment this second time around.

“The hope is that one day doctors will be able to develop a therapy that is much gentler,” Larisa said. “By supporting this fellowship, we are supporting the ideas of younger generations of doctors and their research. We are very excited about this fellowship.”

Lily is also focusing on her future. She will be visiting colleges and deciding where she will pursue a career as a pediatric oncology nurse, a dream inspired by the many nurses in her life over the years.

When Lily finishes chemo this second time around, she will have had 1,544 active days of various forms of treatment for her leukemia since age 7.

“I am determined to do whatever I can to beat this,” Lily said.

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