If you will—try to visualize this setting: it’s a recent Saturday afternoon in Lexington, and at the Lester home off Harrodsburg Road, two adorable little girls are gleefully playing together in the sun-lit family room of their home. Bennett, who is three, and her sister Juliet, who is 10 months. At first glance these sisters appear to share a similar hairstyle, but a closer look will allow you to recognize that Bennett’s closely cropped hair only partially covers the myriad of surgical scars on her head. At times, as Bennett runs, her balance isn’t perfect.
Bennett is one of fewer than 300 children worldwide who have been diagnosed with ETANTR, an extremely rare and aggressive form of childhood cancer, which manifests itself as a tumor and enlarges in the brain of children. To date, despite extensive ongoing research, there is no known cure.
Prior to the onslaught of this invasive disease, Bennett was a ‘sprightly’ young toddler who spoke in full sentences, was incredibly inquisitive, and perpetually happy. She has been surrounded by love, yet now, despite her ready smile, there’s an evident element of sadness beneath her exuberance. She has been the recipient of virtually every medical procedure that advanced science can currently provide; yet there is a residual tumor in her brain—and it is growing. In a few months of her three short years of life, this child has had to face one of the toughest treatment plans which includes multiple surgeries, the strongest level of chemotherapy that is available, two bone marrow transplants, long months in Cincinnati Children’s Hospital and/or Cincinnati’s Ronald McDonald House; and a considerable amount of pain, coupled with the probable question that she must wonder, even at her young age—‘can you stop the hurt’?
Resultantly, there exists within the Lester family, and all across the nation, an ever-increasing number of individuals who pray daily for a miracle for Bennett and her family. Yet, the reality of the situation is this—God will someday take this beautiful little girl home reaffirming that there really is an angel-to-be in our midst, and that her name is Bennett Lester.
My recent meeting with the family, Katie Anne and Billy Lester and their beautiful daughters, provided significant insights into how the family has coped, noting that Bennett’s baby sister Juliet was born less than one month before Bennett’s condition was diagnosed.
Katie Anne has an insightful and incredibly moving blog on the internet: CaringBridge.org/visit/BennettLester. From that blog, this information was posted by her mommy:
“We welcomed our second daughter, Juliet, into the world on June 15, 2014. We were told that integrating a new baby into the family with a 2½ year old at home wouldn’t be easy, and our older daughter Bennett’s change in behavior certainly validated. Looking back, we thought she just wasn’t adjusting well to the new baby. Until July 6, 2014 Bennett had been the healthiest little girl; she had never even had an ear infection. On this Sunday she reached a new level of behavior and symptoms. Earlier in the week she was grumpy, she threw up twice, and she was very tired. Thursday she was better and we thought ‘we were out of the woods’. Friday, she was lethargic, but would have brief periods throughout the day when she was back to her normal self. That day, I noticed a couple of times that her left eye seemed a little inward set…then, when I would look at her again, her eyes were normal. Saturday was much, much worse. I called Billy’s Dad, who is a physician, to come over and evaluate the situation. He suggested taking her to a different environment. My Mom and I decided to take her walking in a nearby park. I noticed immediately that her walk was unsteady. I tried to get her attention, and she was just staring. I snapped my fingers and then she was back. As my mom began to push Bennett on the swing, the ‘blank stare’ continued. We went to the ER immediately, during the trip the blank stares continued. By the time we got to the ER, she could barely open her eyes.
That’s how fast this all happened. The CT scan in the ER discovered a large brain tumor. We were rushed to the UK ER that night, and were scheduled for brain surgery the next Monday afternoon. Her tumor amassed about three fourth of the right hemisphere of her brain—saying it was large was an understatement—and at this point, we were close to losing her.
They removed 95% of the brain tumor, but couldn’t get the remaining 5% due to the location and the loss of blood. Her recovery from the surgery was painful. My vivacious two year-old-had staples covering half of her head, and she could barely function. The next five days were prayerful. Will she be able to move her hands? Her eyes? Can she sit up? Thankfully, after two weeks, she recovered enough for us to take her home.
Three weeks from the day of surgery, we finally had a diagnosis. UK sent its findings to Cincinnati Children’s Hospital, who re-tested the sample. After finding it difficult to diagnose, Cincinnati Children’s Hospital forwarded the samples to St. Jude. The diagnosis: a high grade and very aggressive infant brain tumor called PNET, with the subset being ETANTR. While the initial mass resection was considered successful, the remaining 5% that was left was a BIG problem. After meeting with the doctors, we began praying for a miracle. Due to the rarity of the disease, there is not much research and clinical data on this specific subset of the tumor. In general, the median duration of survival after diagnosis is a year.
“Plan A was to attack the disease with all modern medicine had to offer with a goal of complete healing. However, that wasn’t in God’s plan for her or for us—so we have transitioned to ‘plan B’—showering Bennett with love and prayers here at home. No more needles, no more surgeries; just a lot of love.”
That decision has proven to be the right one in many ways. Recently Bennett and her parents returned from a fascinating trip to Disney World, thanks to the Lexington Dream Factory’s “Grant a Wish” outreach. According to Billy, “Although Bennett tired easily, it was a joy to be able to get our daughter ‘out in the sunshine’ and to watch her smile, listen to her ‘giggle’, and to react so positively to the experience.” He noted that ‘thanks to the VIP passes provided to the family, the trio was able to be ‘first in line’ anywhere in the park. The first ride that Bennett chose was the hugely popular/iconic Disney “It’s A Small, Small World”; she was mesmerized by the experience so much so that she didn’t want to go anywhere else! The family spent ‘a disproportionate amount of time’ on that ride until Billy finally convinced Bennett that there were, indeed, other things to see and ride.
According to her parents, to some degree it seems as if Bennett is actually getting better. The chemo is leaving her body, and she is regaining some normalcy. Her mom talks to her about Heaven, and meeting Jesus, but whether or not Bennett ‘gets it all’ is questionable. There are days when three separate bubble baths are in order—likely because there were so many months when the surgeries wouldn’t allow her to enjoy that little girl pleasure.
The ongoing acts of kindness from the Lester’s community are noteworthy: fully prepared dinners arrive on the front porch of the family’s home; photographers donate their time to capture precious moments and businesses like Two Chicks & Co. and The Beaufort Bonnet Company created special products for their customers bearing Bennett’s name.
From within and far beyond Central Kentucky, the family has received thousands of cards and letters. The overwhelming theme is a fervent prayer for healing to the One who loves Bennett the most and has shown up in so many ways. The Lester family recognizes that their strength and courage to face each day is derived from others’ persistent petitions on their behalf. They want TOPS readers to know they have felt His love through His people and are forever changed.
Katie Anne noted: “Every day is a gift; it was true before this happened, and only now do I fully realize it. We have to believe that this is not Bennett’s home, and that she will someday be going to a place where no fear, no pain, and no sadness exists. She will run as fast as Clifford the dog, and jump as high as the monkey Curious George. And the real hope at the end of all of this is that we get to see her again—at her heavenly best, THAT assurance is what will sustain us.”