Raising Awareness: Shana Hill shares daughter Elyse’s story

September 4, 2020 chris
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By Katie Bohannon, News Editor

September serves as Childhood Cancer Awareness Month, a time to reflect on the children worldwide whose lives are altered each day. Local resident Shana Hill understands the affect childhood cancer has on young lives, and the parents that endure the disease with their sons and daughters. Through her own daughter Elyse, Shana experienced a life not defined by cancer, but a renewal of faith, an inspiration of hope and a heavenly comfort that only comes from above. 

Shana is the mother of two children. Quiet, kind and reserved Ridge was the counterpart to his younger sister Elyse, who Shana describes as spunky and personable. A child that loved her family and burst into each room like a ray of sunshine, jovial Elyse was born with a head full of black hair and clear blue eyes. Shana looked at her children lovingly one July in Gatlinburg, Tennessee, overcome with happiness, feeling as if she was in the best place in her life. Though Shana’s life was about to drastically change forever, her father spoke some words of wisdom to her that she would carry with her for years to come.

“You take so much for granted,” Shana said. “My dad told me, ‘Shana, I know right now everything is very worldly in your eyes. You look at things and you’re blessed. You have a lot…you have two great kids and you’re fixing to move into this extravagant home, but don’t lose sight of things.’ In other words, dad was letting me know that what my happiness lied in was not what it should be. I was so blinded at the time, all I could see that I was happy. I might have thanked God here and there, but it wasn’t like He was a priority in my heart or my life. There were so many things I took for granted.”

Everything changed that August.

One day, Shana noticed Elyse’s condition growing more and more bizarre, drifting further from her usual personality. She was lethargic and groggy, as if she were constantly sleepy.

“It was just kind of strange,” said Shana. “I noticed that Elyse was crying a lot one night. I was getting up and rocking her, and I remember her shaking. I honestly thought maybe she had chill, because it was really brief. Then the next day, she was not herself. She had a different look all day – she wasn’t giggly or smiley…she just seemed kind of lazy, and there was something different about the way she was holding her mouth all day.”

That afternoon, Shana’s mother was holding Elyse when she and Shana caught sight of Elyse’s face and finger twitching, another sign that something was different. Like any mother, Shana knew something was wrong.

Shana took Elyse to Gadsden Regional Medical Center first, where a doctor thought she might be experiencing an allergic reaction to medication. Shana then visited Dr. Kenneth Skelton (who was her pediatrician at the time) and he told Shana to call him if anything changed. Change occurred that afternoon in a frightening way when Elyse vomited profusely, and Skelton told Shana to get her to Children’s of Alabama in Birmingham.

Doctors and nurses came and went throughout the night at Children’s, until one pregnant doctor in her late thirties ordered some tests for Elyse. On August 5 at 2 a.m. in the morning, Shana received news that would alter the course of her life forever.

“[The doctors] come in and say, ‘We found a mass on Elyse’s brain,’” said Shana. “I remember at that moment not even grasping what was about to take place, but looking back that was the moment my life has never been the same.”

Immediately after delivering the news, doctors informed Shana that they could perform surgery to remove the mass. While they were confident they could retrieve the mass from Elyse’s brain, they warned Shana that the type of mass in children Elyse’s age usually coincided with cancer.

With such a close-knit family, Shana and Elyse’s father Jeremy contacted their parents to join them at the hospital for support and encouragement throughout the procedure. Just shy of her one-year-old birthday on August 30, Elyse underwent major brain surgery on August 5 successfully and recovered remarkably.

“A kid can have brain surgery and two days later she is walking around, she’s eating,” said Shana. “It’s the most amazing thing you’ve ever seen – the resiliency of a child is unfathomable.”

Though Elyse’s first surgery proved effective and the doctors removed the mass on her brain, a few weeks later Shana learned that Elyse’s journey had just begun. A phone call informed Shana and Jeremy that the mass discovered on Elyse’s brain was a primitive neuroectodermal brain tumor (PNET), a rare and malignant tumor that evolves from primitive (or underdeveloped) nerve cells in the brain. Just two weeks following brain surgery, Elyse began chemotherapy treatments on her birthday.

Shana recalls a moment when the realization of her daughter’s situation sunk in. Elyse’s beautiful dark hair was falling out by the handfuls, and she made the decision to shave her hair on September 11 – an outward representation of what her daughter was battling inside. Prior to Elyse’s chemotherapy treatments, Shana and Jeremy threw Elyse a celebration for her first birthday and took family photos, two memories Shana feels grateful to have preserved. 

“Elyse could not even walk when she got this,” said Shana. “All throughout chemo, my daughter learned how to walk at the hospital with her little walker. She learned to do normal things a child would do while going through chemo…it was very impressive [her strength].”

Shana dedicates her daughter’s strength to the power she believes cradled Elyse throughout the six months she endured chemotherapy. Though Elyse felt poorly and withstood a horrible sickness, her light never dimmed – she merely shined brighter. Shana shared that she believes all children who face cancer are touched by God, because she witnessed the outworking of the Lord in her own daughter and His love encompassing her as a shield.

“It’s like they literally shine the light of Jesus,” said Shana. “They exude what Jesus’ love is all about…because they are going through so much and yet, they smile and they laugh. My daughter laughed and smiled all the time. The joy of these children…they are so remarkable. There are so many times I look back and think, she saw things I couldn’t see as a child.”

One Sunday, Shana was holding Elyse when she felt smothered with panic at her situation. Elyse was not doing well. As she lay in her arms asleep, Shana called her father to ask if his church would pray for Elyse. Shortly after, Elyse’s eyes fluttered open and she sat up gently. While Shana spoke to her, Elyse looked up at the ceiling calming and began waving, as if someone were there. Then she laid back down in peace.

“There wasn’t a light or anything on the ceiling,” said Shana. “There was an angel, there was something [there] she saw that I couldn’t see. Just the innocence of her…there are no words. She leaned back down and closed her eyes, and I truly believe that was during that time when my mom and dad’s church was praying for her and calling out to God for her.”

That moment represented one single instance of God’s hand on Elyse’s life. Similar moments continued to follow Elyse throughout her journey, incidents that Shana believes were signs from God to comfort her and reassure her that despite the outcome, Elyse would be healed, protected and whole again.

Elyse finished chemotherapy in January of 2015, and though her family had received the promising news that her scans were clear in the past, the tumor returned. After undergoing another brain surgery to remove the second tumor, Shana and Jeremy elected to travel to Knoxville, Tennessee, for proton therapy, a form of medical treatments for cancer that pinpoint specific effected areas in a less invasive and typically successful manner.

Within days of Elyse’s second brain surgery, the tumor was back yet again and was expanding aggressively at an alarming rate, spreading along the edges of her brain where it was initially removed. While the doctors told Shana they were uncertain proton therapy would benefit Elyse, Shana and Jeremy headed to Knoxville.

On the ride to Tennessee, Shana noticed the same symptoms Elyse experienced in August – the lethargy and tiredness. She spotted a little knot expanding from the side of Elyse’s head that she would later discover was the tumor growing. Yet, despite everything, Elyse still illuminated all around her.

“She’d not had chemo for a couple weeks and she looked so pretty,” said Shana. “Her color wasn’t pale, she’d started getting her eyelashes back, and I remember looking in the backseat and thinking she is the most beautiful bald-headed baby ever. She’d gotten a little chunkier and she didn’t look so depleted.”

Elyse endured two proton therapy treatments before a snow storm struck Knoxville in mid-February and her condition worsened. As she grew weaker, Shana felt an urgency to call her family and Jeremy’s family to join them in Tennessee. After a terrifying night when Elyse experienced a seizure and Shana and her father performed CPR on Elyse, an ambulance hurried her to East Tennessee Children’s Hospital.

“The people in the ambulance were amazing,” said Shana. “They were precious. They took care of her. When we got [to the hospital], they rushed her back into the room and all of those people who were in the ambulance with my daughter came in there and literally got in a circle and we all prayed. They were God-fearing people that God happened to put in our path.”

At Children’s, Elyse was put on a ventilator and snuggled in blankets and care. On February 18, 2015, with her family and doctors and nurses surrounding her, Elyse passed away as Shana and Jeremy held her. She was 17 months old. As she passed, Shana asked someone to play a video of her from months earlier, filling the hospital room with Elyse’s infectious laughter and incredible joy. Though that night Elyse fell asleep on earth, Shana knows she awoke in heaven.

  “When Elyse passed and we let her go, it started snowing,” said Shana. “Snow was everywhere – it was the most beautiful thing. I just remember thinking that it was Jesus throwing confetti down [to earth] because He’s got her. The crazy thing is, one week to the day [of Elyse’s passing], it snowed in Gadsden. I took Ridge outside and he had his little razor out in the snow, and I remember feeling like that was reassurance. Every time it snows [now] I want to be where it snows, [because] every time it snows I think of her. I think of [the snow] being white and pure and like the Lamb of God [and it reminds me of Elyse].”

From the snow falling serenely to her daughter’s innocent wave one Sunday, God gifted Shana with signs throughout Elyse’s journey to minister peace and comfort as she grieved. After Elyse’s death, Shana planted some flowers in her yard. One bloom refused to grow, and Shana assumed it was dead. As she was praying in Elyse’s room one day, however, Ridge walked in with a single pink flower for her. The flower bloomed after all, but only twice – on Mother’s Day and Elyse’s birthday. Evidence of God’s affect on Elyse’s life began her first night at Children’s in August, when the pregnant doctor fought to unearth answers about Elyse’s condition. Though Shana walked the halls of Children’s for months following their interaction, she never saw the doctor again.

“No one could ever tell us who she was,” said Shana. “I’m not saying she didn’t exist, but I found it so eerie that we couldn’t find her. She was the only one that took initiative that no one else would, and we were at Children’s for six months and never crossed her path again. I just thought she was our angel.”

Shana shared the people Elyse’s life impacted, noting that a woman in New York followed her story. The woman never believed in God, nor cared to, but Elyse’s journey spoke to her. She reached out to Shana and expressed that since she learned about Elyse, she had gotten saved.

“You never realize the impact one little being can have on a world,” said Shana. “Elyse never met her; [that woman in New York] never met any of us. It is the most amazing testimony to what a little life can do.”

Shana considers being a mother her greatest accomplishment in life. During the time that Elyse was sick, her greatest concern was that she never neglected Ridge, but always surrounded him with encouragement and reminded him that he was loved, appreciated and treasured. She noted that she and Jeremy worked well as a team to divide time between both their children, because while Elyse needed Shana, Ridge needed his mother as well.

“It was a very hard time because I wanted to be such a good mother to both my kids,” said Shana. “We didn’t get out much, but when we did everyone [focused on Elyse]. I was always worried about Ridge because you always felt like you never knew what he was feeling, being that young and seeing her lose her hair, and knowing that she’s sick but not understanding why. He was still a baby too, and I had so much compassion for him.”

Shana recalls the song Place of Freedom by Highlands Worship from a video of Elyse, a song whose lyrics ministered peace to Shana and served as a reoccurring melody throughout her healing process. Though it took several years, Shana believes the only way she endured losing Elyse was through God’s merciful comfort lifting her up. Her compassionate nature and tender heart only flourished more after Elyse, and she believes Elyse enlightened her to understand what is truly important in life. Though Elyse is not with Shana on earth, Shana finds joy in her cherished memory and peace in the knowledge of who cares for her child until Elyse is with her again.

Shana offered a few closing words to other parents who might be experiencing the same journey.

“Every moment with your child is a God-given, precious moment,” said Shana. “Take in every moment that you have with your child, make every moment with them count and cling to Jesus with everything you’ve got. On August 5, 2014, my life changed, and my life has never been the same since. When you’re in that place of your child being sick, you’re always hoping for the best. Embrace every moment you have with your children and family, and don’t get frustrated over [little] things. [God gives you moments] to teach your child to make him or her a good person. You are in charge of making this little human have a decent heart. That is my prayer for Ridge – that he is kind and compassionate, that he has a heart for others, that he is a man of integrity, that he does the right thing when no one is watching, and that he is a man of God. The way that I pray for my son now, I did not know how to pray for him before [Elyse]. As long as I know that my son’s salvation [is secure], I know that he is going to be with his sister [again] one day.”