 Seeds of hope: Lily’s Garden grows as 8-year-old leukemia patient triumphs over disease
By Donna O'Neil, Staff writer
doneil@williamsonherald.com
Since December of last year, 8-year-old Lily Hensiek has changed her mind about what she wants to be when she grows up. Before December, she wanted to be a teacher or a mom – most likely because of the two major female role models in her young life. Today the Walnut Grove third-grader wants to be a nurse – her inspiration – the nurses from the sixth floor at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
Lily has Pre B Acute Lymphoblastic leukemia.
In remission now, prior to learning of her diagnosis, Lily was an active young lady who participated in gymnastics and hung out in the neighborhood with her younger sister Sophie. Today after extensive chemotherapy, although her mom says she tires easily, Lily is becoming more active and is even participating on a swim team.
She is one of two children being honored with events during the Sept. 19 Franklin 4 the Cure event. Lily’s event is the 1/3-mile Lily’s Rocket Run, while there is also a 1/4-mile Cooper’s Run. Registration fee for either run is $12. This fee includes a T-shirt, medal and other chidlren’s activities after the run.
The day’s events begin at 7:30 a.m. with a 5K run with a start/finish line at Westhaven Town Center. Entry free is $25 or $28 from Sept. 4 to 18, $35 on race day. T-shirts will be provided to all who register prior to Sept. 4 and will be available on a first-come basis to those who sign up after that date.
Last November, Lily complained to her parents of back pain, which was initially attributed to gymnastics-related strain. One night, the young girl awoke with an unexplained fever, screaming and writhing from pain in her back. Her concerned parents, Larisa and Steven, immediately took her to both Williamson Medical Center and then Children’s Hospital to figure out what was wrong. Doctors at both medical centers were unable to find the cause, however, neither tested the child’s blood.
Lily’s mom Larisa made an appointment with her daughter’s pediatrician who did a blood work up and made the initial diagnosis – leukemia. He sent them back to Vanderbilt for a conclusive diagnosis.
When the pediatrician gave Larisa the initial diagnosis, she said, “He took me into another room and I broke down. But when the doctors at Vanderbilt confirmed the diagnosis Lily was in the same room with my husband and I. We had to stay strong for her.”
Lily was immediately admitted into Children’s Hospital for treatment to begin.
Larisa told how the doctor’s explained the complicated disease to her daughter. The doctor asked Lily to think of leukemia as if it were weeds in her garden – her blood cells being the garden. Like in any garden, kept unattended, the weeds would take over. In this instance, the leukemia smothers the blood cells. Enter chemotherapy. Think of that as weed killer, he told them. The weed killer, chemo, will allow only beautiful flowers to grow – only lilies in your garden. He further explained that even though after an initial round of weed killer and tests that show no presence of weeds, maintenance would have to continue just in case.
“We had many long hours in the hospital,” Larisa said. “On many occasions she said, ‘It’s just not fair,’ she would say to me, during our heart-to-heart talks.”
Nurses and doctors both engaged Lily in the treatment process, keeping her informed of what they were doing as well as explaining the treatments to her.
Larisa said Johnson was one of many people who have been involved in Lily’s journey. The many people who have stepped up and participated, the initial way that the doctor’s told Lily about leukemia and the way the medical staff included her in the process, Lily decided she wanted to help other children suffering from childhood cancer.
“From that,” her mom said, “Lily’s Garden was established.”
Lilysgarden.com is a glimpse into Lily’s recovery process, a bit of education on leukemia and a fundraising site benefiting children’s cancer research.
When Lily’s doctors empowered her with knowledge about her disease, the little girl stepped up and decided to make a difference. She has been inquisitive throughout the process, her mom said.
“She has become very educated about the disease and about her medications,” Larisa said. “She can explain what each pill is and its side effects. She has even participated in her own treatments.”
On the Web site, visitors can keep up with Lily’s progress. There are several photos of Lily, before, during and after her treatments. She is shown with a bouncing bob of flowing hair. She is also pictured completely bald – a stage her mom said was difficult for both of them at first, but Lily soon wore as a badge of honor.
Laurisa said, “Lily was only too willing to explain about her leukemia and her treatments to people who would ask about her hair loss.”
Today, Lily’s locks are slowing growing back now that the most intensive round of chemo has concluded. Her chemo is on maintenance where she goes for daily, weekly, or monthly treatments through the next few years.
She is getting back into a routine. After riding the morning bus, she attends school with her classmates, and although she attends only half-days, she is able to complete other schoolwork assignments at home.
Education has been important to Lily in her life. In fact, Jay Jordan, principal of the Walnut School Elementary, made quite an impact on Lily when he visited her in the hospital. He recalled a conversation he was having with Lily’s grandmother, Carol Johnson, who works at Walnut Grove.
He said, “It just hit me. Her grandmother said, ‘On Thanksgiving Day Lily was doing cartwheels on the front lawn and the following Tuesday she had her first chemotherapy treatment.’ You can’t take anything for granted.”
He said he searched for something to bring with him to the hospital. He brought a book, “Dreams” by Susan Bosak.
Together, he sat with Lily and read the book. They talked about dreams and goals. From that, they created a cooperative dream and goal contract. In a written contract he presented to her, he wrote, “Our goal will be to ride our bikes from your house to the pool in Westhaven to watch you go down the slide on my birthday, July 26. My dream is to be invited to your college graduation.”
Jordan said, “How wonderful would it be if her health was such that we could do something like that on my birthday. She
would gift me with her good health and I thought by doing something active with her she would be well on her way to recovery. That was a short-term goal. Then I thought of a life event and thought it would be a dream to be invited to her college graduation. That symbolizes her full recovery.”
As July 26 approached this year, Larisa received a phone call and a couple of visits from the principal wanting to make sure that the date was open for the goal to be achieved. On that date, Larisa rode in a golf cart while Johnson rode his bike down to the pool. Together they enjoyed the pool where even he went down the slide several times that day.
The Lily’s Garden theme has also been carried through into the Walnut Grove Elementary School. Brooks Tudor, the father of one of Lily’s classmates, was inspired to paint a mural in the hall near her classroom. The mural depicts an English tea garden with a walking bridge over a small stream. In the air there are butterflies and stars.
Lily’s grandmother has also taken an active role in Lily’s recovery. Lily, Sophie and their grandmother get together for creative time often and out of that, the three ladies have developed Sassy Sisters Soaps. What was once an afternoon project has developed into quite a little business venture for the girls. The funds raised from the sale of the soaps now benefit children’s cancer research efforts.
The soaps, their scents and their shapes have all been designed by Lily and Sophie.
“This is their way of making sure that other children get the same chance as Lily has to receive treatment,” said Larisa, who says before Lily was diagnosed she was unaware that only 3 percent of all cancer research funds are spent on children’s cancer. She also noted that the recovery from leukemia has vastly improved since the 1960s when only 3 percent of children survived. Today she noted, if diagnosed in time, there is a 98 percent recovery rate for children with leukemia.
Franklin 4 the Cure promises day of fun, music at Westhaven
The fourth annual Franklin 4 the Cure event will offer a variety of events for the entire family throughout the day and evening, Saturday, Sept. 19 in the Westhaven development, off New Highway 96W in Franklin.
Westhaven’s Front Street will be transformed into Hope Street for the day as the festivities continue throughout the event with inflatables, face painting and other family-centered activities.
The day’s festivities conclude with a performance by multi-platinum recording artist Deana Carter in “An Evening with Deana Carter,” at 7 p.m. on the Great Lawn at the Westhaven Residents Club. Doors will open at 5:30 p.m. Tickets for this event are $20; $10 for children ages 5 to 12 and under 5 are free. Beverages and food will be available for purchase at The Great Lawn.
A limited number of VIP tickets are available for $125, which includes a buffet dinner and beverages and premium balcony seating.
A silent auction will be held at the concert, featuring gift certificates, dinners, award show tickets, airline tickets and more.
All the proceeds from the day’s events benefit the fight against cancer.
For information, visit www.franklin4thecure.org.
Posted on: 9/10/2009
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