A Grateful Goal

Lily Hensiek doesn’t remember much about the first time she was diagnosed with pre-B cell acute lymphoblastic leukemia (ALL) when she was 7 years old.  

“The big thing was the back pain that radiated down my legs. I could barely walk,” she said. “I mainly remember being shocked and confused. It was a big learning curve of what leukemia was and what I was about to go through.” 

She didn’t know then that her cancer journey would last through her teenage years or that she would play an important role in improving treatment for other children with ALL. At first, she and her family had to deal with the frustration, shock and denial of a cancer diagnosis.

Hensiek was learning how to do a back handspring in gymnastics when she complained of lower back pain, so her mother, Larisa Featherstone, first thought it was a sprain. When Hensiek spiked a fever of 103, she then thought it was a virus or urinary tract infection. After two trips to the emergency room with no answers, Featherstone took Hensiek to her pediatrician who ordered blood work and discovered she had leukemia. 

“I remember thinking, this can’t be happening. It’s not possible,” Featherstone said. “There were so many words that were foreign to me — not that cancer is a foreign word — but I kept thinking, surely this can’t be my kid they’re talking about. I kept waiting for the doctors to tell me they’d gotten her blood mixed up with someone else’s. When Lily first felt sick and we went to the ER, the doctors told me they ruled out ‘everything bad.’ I think back on the conditions they ruled out, and they were all better than cancer.” 

She did her best to hold it together while trying to explain cancer to her child. 

“Lily kept asking when she’d be able to go home. She was scheduled to have her ears pierced a few days after her diagnosis and wanted to know if it would be canceled,” Featherstone said. “Lily couldn’t conceive of it lasting more than a couple days because all she’d known was strep throat and ear infections.” 

Hensiek enrolled in a clinical trial through the National Cancer Institute’s sponsored cooperative group for pediatric cancer, Children’s Oncology Group, and her leukemia went into remission within the first month of treatment. She continued in remission through two years of chemotherapy. She recalls a lot of nausea and a chemotherapy drug nicknamed the “Red Devil” for its color and ability to turn her urine red.

In addition to the time she spent in the hospital, she spent a lot of time in the clinic after her diagnosis. When she finished two years of treatment, she followed up monthly for the first year; every two months for the second year; every three months for the third year; every four months for the fourth year and annually after five years. After five years she was considered cured because the chances of relapse after five years of remission are less than a few percent. 

The Relapse

One day in September 2016, when Hensiek was 15, and 5½ years out of treatment, she told her mother, “My back’s hurting, and I’m running a fever, but I don’t feel bad.” 

“One thing about being a cancer mom is that you tend to overreact, so in an effort to not overreact I said, ‘Let’s see how you feel in the morning.’ She woke up fine,” Featherstone said. “A week and a half later, she was playing the last game of her volleyball season, and I thought she looked pale and tired, but because of the chemo she went through, she tires more quickly than most kids her age.” 

That night Hensiek ran another fever and experienced more back pain. They went to her doctor’s office in the morning, which offered a blood test to put everyone’s mind at ease. The call Featherstone received with the results was that her daughter’s leukemia had returned. 

“I was with Larisa a week before Lily came in with her relapse — at a fundraising event for Monroe Carell,” said Debra Friedman, MD, director of Pediatric Hematology and Oncology at Monroe Carell Jr. Children’s Hospital at Vanderbilt, and Lily’s treating physician for what they call her second round. “Larisa spoke at the event and said how well Lily was doing and that she’d finally gotten to the point where she woke up and didn’t worry about leukemia. And literally a week later, Lily was in my clinic complaining of back pain that didn’t make sense. I got a blood count, and she had relapsed.”

When Hensiek was originally diagnosed in December 2008, the standard of care for her type of leukemia was chemotherapy. Eight years later, when she relapsed, another clinical trial was available at Vanderbilt through the Children’s Oncology Group, designed specifically for patients without early relapses.

“Lily relapsed very late — way out of normal late,” said Friedman, holder of the E. Bronson Ingram Chair in Pediatric Oncology. “The standard of care at the time for someone who relapsed as late as she did was reinduction chemotherapy and cycles of rotating intensive and nonintensive chemotherapy, which is what she did the first time but more intensive. The open clinical trial, a Phase 3 randomized trial, was comparing the standard of care with chemotherapy backbone to that with a new agent incorporated called blinatumomab. In the Phase 3 trials, the standard arm is always the standard of care, and the alternative arm is, ‘Hey, can we do better?’ It’s almost like a no-lose situation.” 

According to Friedman, blinatumomab, which Hensiek and her family call blina, is a bi-specific T cell-engaging immunotherapy that has a receptor for CD-19, which is on leukemia cells, and a receptor for CD3 on immune system T cells, so it brings the T cells to the leukemia cells to destroy them. In other words, it trains the body to fight off the cancer cells.

“If you’ve heard of CAR-T cell therapy, this is a similar concept, but it’s actually a pharmaceutical agent, so to say,” Friedman said. “Some people call it a poor man’s CAR-T, but it’s neither cheap nor poor. It’s on the top 10 list of most expensive drugs in oncology.” 

New Treatment Path

Hensiek and her family had a difficult time deciding whether to participate in the study. 

“It was a hard decision. We struggled with it a lot, talked with doctors and did a lot of research,” Featherstone said. “We decided to participate and put whether or not Lily would receive the chemo side only or the chemo-plus-blina side in God’s hands and knew it was a blessing in disguise, because this was an option she didn’t have the first time.” 

Hensiek was placed in the experimental arm of the study to receive both chemotherapy and blinatumomab, and she was the third Vanderbilt University Medical Center patient to get blinatumomab on the clinical trial.

She said her doctors gave her a weekend to “be normal and hang out with friends” before she went inpatient for a month as the first step in another two years of treatment, which altered the course of her teenage years.

“I had all the support in the beginning, but everyone has so much going on at that age, and it was hard to keep friendships. I had one good friend throughout my entire treatment who was there and would visit me in the hospital consistently,” Hensiek said. “I missed out on football games and having a normal high school experience. I tried to go to classes when I could, but I had to have an immune system, feel OK and have enough stamina to last the entire school day. It was difficult to keep up with my schoolwork, but my big goal was to graduate with my friends and classmates, even though it was recommended that I take a year off to focus on treatment.” 

When Hensiek was on the blinatumomab portion of treatment, it was infused intravenously 24/7 for a month. 

“I had a little backpack that I’d carry around with me. I was very forgetful of the backpack and would walk away and get yanked backward,” she said. “I felt almost 100% when I was on that drug, which is crazy compared to the chemotherapy, on which I’d always feel exhausted and nauseated. On the blinatumomab, I always felt like a normal human and never nauseated. I felt like I could go hang out with people and wasn’t as tired. I was also able to go to classes.” 

The whole family felt better when she felt better. 

“Drugs are hard. Most people don’t realize how brutal cancer treatment is unless they’ve walked it themselves or with a family member,” Featherstone said. “When Lily was on the blinatumomab, she felt good and was able to be a more normal kid, which is what she really wanted.” 

According to Friedman, Hensiek did very well in the clinical trial, went into remission quickly after the first month of therapy, tolerated the blinatumomab well, and finished therapy in 2018. She has remained in continued clinical remission ever since. 

The study she participated in was closed and analyzed, and the arm that incorporated blinatumomab had better event-free survival. It is now the standard of care for patients with late leukemia relapses. 

“It was such a positive result, we all said, ‘Well, can we integrate this into up-front therapy?’ Or is it only effective in relapse therapy?” Friedman said. 

In recent years, another Phase 3 randomized clinical trial opened up within the Children’s Oncology Group for patients with standard risk pre-B cell acute lymphoblastic leukemia, and patients were randomized to standard of care chemotherapy or chemotherapy with the addition of blinatumomab in a few cycles. At an analysis at three years, the blinatumomab arm was statistically and clinically superior to the chemotherapy-only arm — so much so that the study closed early, and most patients are getting blinatumomab added to their chemotherapy-only protocol. 

“Now our standard of care for all pediatric patients with B-ALL, whether they’re in the standard or high-risk category, whether they’re little or older, is to give them a regimen that incorporates chemotherapy and blinatumomab,” Friedman said. “It really has changed the face of how we’re treating ALL because we’re incorporating immunotherapy for all patients. Virtually every program in the country has incorporated this as the standard of care.” 

Friedman said the next step may be to substitute some chemotherapy with blinatumomab. 

“We’ve added blinatumomab to the chemo regimen, but we haven’t substituted,” Friedman said. “I think that may come in future studies, as well as the introduction of other new agents. Though it occasionally has very bad side effects, which is why we start it inpatient and monitor patients for several days, blinatumomab is much better tolerated than chemotherapy, generally speaking, although more burdensome because it is a continuous, 24/7, 28-day infusion. The results of the trials testing the addition of blinatumomab for relapsed and newly diagnosed B-ALL show the power of clinical trials.” 

Lily’s Garden

Although she was just a child when she received her first diagnosis, Hensiek wanted to do something to take some type of action against cancer. 

 “It was such an unfair thing we were going through, not just for us but for everyone, and we wanted to make it less unfair in the future,” Hensiek said. “My family and I wanted to support the Medical Center in treating kids with cancer and hopefully finding better ways to treat them.”

She started with a goal of $100 and increased it to $1 million when her mother challenged her to reach higher. Featherstone never thought they’d raise that much money, but, through community fundraisers, gifts from family and friends, donations from local foundations and businesses, and support from Johnston & Associates, a workplace safety consulting firm founded by Hensiek’s grandfather, Ron Johnston, she surpassed her goal and created the Lily’s Garden Endowed Lecture in Childhood Cancer and the Lily’s Garden Research Fund. These funds have supported visiting professors, research at Monroe Carell and Vanderbilt-Ingram Cancer Center and the leaders of the future — oncology fellows and junior faculty. 

The garden theme was born of the way Hensiek’s doctor originally explained treatment to her: that cancer was the weeds that had overtaken her garden of cells, and chemotherapy would remove those weeds and allow her garden to grow again. 

“Once we surpassed the goal, Lily said, ‘There’s still cancer,’” said Featherstone, who is CEO of Johnston & Associates and chair of the Monroe Carell Advisory Board. “A lot of people asked her to set a new goal, and she said it was for there to be no cancer. Unfortunately, it’s not about a dollar amount — it’s about finding a cure and getting better treatment in place, and that work is not done yet.

“When Lily was first diagnosed, I decided I was going to do all this crazy research, which was ridiculous but my way of dealing with it,” Featherstone said. “I researched every single thing about all these drugs and didn’t understand 99% of it because I’m not a doctor, but what I found fascinating was that sometimes there are wild ideas or out-of-the-box thinking, and that’s what drives innovation. And so, encouraging these doctors and providing them with funds so they can do what they do so children can have more successful outcomes — that’s really the goal.”

Hensiek’s family, Larisa and Phillip Featherstone and Carol and Ron Johnston, continued their philanthropic support with the establishment of the Lily’s Garden Fellowship in 2018 to support pediatric oncology fellows. In 2022, the family made a new commitment to endow the Lily’s Garden Discovery Researcher Fund  to support researchers in pediatric cancer.

Featherstone said she had just started feeling like their lives were back to normal when her daughter relapsed in 2016.

“She finally got caught up in school. She was playing volleyball,” Featherstone said. “The doctors give you these road maps when your kids have treatment, and I’m very methodical. I checked off literally every medication and visit. We felt like we’d done everything we were supposed to do, and it was smooth sailing. My younger daughter, Sophie, said it best: The first time was horrible, but starting Lily’s Garden gave our lives purpose. The second time was like, do we really need to go through this again? I realize that’s not how it works, but that’s how it felt.” 

Because she relapsed so late, the thought that it could happen again lives in the back of their minds. 

“I always tell people, she’s out of treatment longer this time than she was the first time, but the chance she could relapse late is still there,” she said. “I fear relapse, but I continue to see more advancements are being made. If something were to happen again, which would be horrendous, there are even more options, which gives her more chances.” 

The Future

Hensiek, now 23, accomplished her goal of graduating with her high school class in 2019 and graduated from the University of South Carolina in 2023. While working as a clinical research assistant at the UT Southwestern Medical Center in Dallas, she set a new goal: to be a physician assistant. She started the PA program at Kansas State University in January. 

“For as long as I can remember I’ve wanted to be in the medical field. I loved my nurses during my first diagnosis — I even had a few who’d gone through cancer treatment. There were times when I didn’t want to take my medicine, and they were the only ones who could convince me to take it,” Hensiek said. “I want to be that person for future patients. I hope to bring a perspective of understanding that’s different from other medical professionals.”

Friedman, who has had many conversations with Hensiek over the years about her interest in the medical field, said she will make a wonderful physician assistant. 

“She always asks good questions. She was always eager to learn. If something was going on, she always wanted to know why it was going on and what we could be doing differently,” Friedman said. “She has an inquisitive mind and is truly a lovely human being who cares about other people. She also understands the reality of pediatric cancer and the medical field. She’s not going in with blinders on thinking she’s going to cure the world. Over the years, she saw people around her not survive their malignancy. She’s lived it. She’s going in with her eyes wide open, and I know that she will make an impact for so many in the future, as she has already done.”