And she did.
Katelyn isn’t going anywhere, Sharon thought.
They got her admitted, and later that evening, Dr. Soud made a visit to his little patient, a girl he had known and taken care of for the past twelve years. He sat down beside her on her hospital bed and explained.
“I’m not sure what you have, but I’m confident we’ll be able to figure it out and we’ll get you well,” he said gently. “We’ll be running some tests, and right now we’re just trying to figure everything out, so you have to be patient with us, okay?”
Katelyn smiled with half her heart. The other half pounded with fear. She knew that the mass they had found on her spine appeared cancerous, and, like in the minds of most twelve-year-olds, cancer meant death.
The night Ray arrived at the hospital after chasing down Crystal’s bus, Katelyn was still awake. She had waited for him, just as she had done from the time she was a little girl. It was a rule in their house that Ray was always the last to tuck her in, and those moments before bedtime were meant for snuggling and talking about everything and nothing. He knew she would be awake, waiting, ready to talk.
Before he opened the door to her room, Sharon’s words echoed in his mind as if they were his own.
You can’t be crying, she had said. You will scare her to death.
So he wiped his tears once again and walked into Katelyn’s room, where she lay beneath a tree of IVs dripping relief into her veins to keep the pain in her back at bay. As he approached her bed, his mother’s voice joined his wife’s.
Pull up your bootstraps, and pull ‘em up tight.
It was the advice his mother had always given in hard times.
It was time to be strong.
“I knew you’d be up,” Ray said nonchalantly with a smile before sitting down beside Katelyn and taking her hand. She looked every bit as healthy as she had a few days before, when he had tucked her into her own bed at home.
“Don’t worry about this,” he said to his daughter, hoping to give her the confidence he knew she and Crystal had always depended on. “Whatever we’re dealing with, everything will be fine.”
Katelyn nodded gently. He kissed her goodnight and stepped into the hallway, where he found Sharon and wrapped her in his arms.
“We’re gonna get through this together,” he whispered in her ear.
They had witnessed the ending of a marriage between two of their closest friends after the loss of their daughter, and that was not going to happen to them.
“We are going to do this together, talk about it together, feel it together,” Sharon said, her head buried in Ray’s shoulder, and all he could do was nod. They needed each other more now than ever.
The next day, they knew exactly what they were dealing with.
5
“Katelyn has leukemia,” said Dr. Michael Joyce, an oncologist from Wolfson Children’s Hospital in Jacksonville, where Dr. Soud had referred Katelyn and her family.
“She has Acute Lymphoblastic Leukemia, or ALL, one of the most curable types of cancer,” he said, giving them some hope. “We can treat her here, but I think you should get her to St. Jude in Memphis. They are known for their work with cancer and they are up-to-date on all the latest and greatest treatments. We consult with St. Jude and we follow their protocol. It’s an option for you, but the decision is yours.”
They had called Memphis “home” for the past year, so the decision was easy. The next day, they were on a plane and admitted to St. Jude Children’s Research Hospital, where they learned Katelyn’s protocol—two weeks of intense chemotherapy to get the cancer into remission and then two-and-a-half years of daily, weekly, and monthly drugs to keep it there. After blood work and DNA testing to see how well Katelyn would respond to treatment, they learned that her cure rate was 98 percent.
This is gonna be a breeze, Sharon thought.
There was a clear-cut plan, a fourteen-drug protocol, a strict regimen with precise doses, deadlines, direction, and a predicted, successful outcome. They just needed to take one step at a time, and those steps would lead them to the beginning of a cancer-free road.
But less than two weeks after being admitted, Katelyn developed a high fever and doctors discovered through cultures and blood work that she had bacteria in her blood and bowels, so they started her on antibiotics.
“Mom, my back hurts really bad,” Katelyn complained one night, so Sharon went into the bathroom of her hospital room and filled the jetted Jacuzzi tub to the brim.
“Hop in,” Sharon said, and Katelyn sank into the water’s warm embrace. She closed her eyes and let her head rest gently on the cool porcelain—her body weightless, her mind free of cancer.
From the time Katelyn was six years old, she had spent nearly every single day of her life in a pool, swimming with her teammates, preparing for meets. The rise and fall of the breast stroke, the feeling of her body’s movement through water, its calming sensation, were all as natural as breathing, and, to her, just as important.
She lay in that tub as still as the water until her goose-bumped skin was as shriveled as a prune. Sharon smiled. She remembered the time Katelyn’s coach blew the whistle during a swim practice in the middle of winter and shouted, “Hit the showers!”
The other kids had climbed from the pool, but Katelyn continued down its length, lap after lap, lips quivering, breath lost, determined as ever.
“Time to get out,” Sharon said, helping her daughter from the tub and back into the hospital bed, her body as relaxed and free as the tide.
The next morning, Katelyn woke up with a splitting headache, worse than she had ever felt in her life.
“I can’t stand it,” she said with her hand pressed to her forehead, and Sharon filled the tub again. Katelyn climbed inside, and as she had the night before, she let her body sink to the bottom, become one with the water as her head rested peacefully and her eyes closed. Gentle water lapped against her body almost invisibly with every drip from the faucet. Sharon watched as water did its magic on Katelyn, soothing her from the inside out, before it turned on her and crashed violently, suddenly, against her.
Katelyn’s body jolted and stiffened, thrashed the water’s calm, sending tiny tidal waves onto the hospital floor.
“Help!” Sharon screamed, pulling the emergency cord with frantic, shaking hands as a nurse ran into the room and jumped, fully clothed, into the storm, lifting Katelyn from the tub into her arms until other nurses arrived to help drag her out.
Words and screams stuck in the back of Sharon’s throat as she watched the nurses and her shaking daughter with frightened eyes. She needed to know what was going on. This was not part of the plan. She stood, frozen, chaos circling, as Dr. Bob Timbarrough came into the room and took her hands.
He looked straight into her eyes and said, “Mom, you’ve got a very sick little girl here. You’re going to see a lot of people coming and going. I need you out of this room right now. As soon as I know something, you’ll know something. Give me a little time and we’ll get this thing figured out.”
He was polite but forceful, kind but stern. He gave her the direction she needed, and all Sharon could do was wait. She paced the halls and prayed to God.
After several tests and a spinal tap, doctors determined that the bacteria in Katelyn’s blood and bowels had migrated to her brain.
“We’ve never had anyone with these bacteria in the brain live for more than forty-eight hours,” a neurosurgeon said to Sharon as he discussed test results with her, viewing scans of Katelyn’s brain. “And we’re in hour twenty-three.”
Sharon sat as still as the room, stared through the scans, waiting for her words and thoughts to come together, to make any kind of sense. It was 6:00 a.m. and Ray hadn’t made it to the hospital yet. This doctor was giving their daughter a day and an hour to live, and that was his plan. There was no other.
“Thank you very much,” said Dr. Timbarrough, almost sarcastically. He looked at the other neurosurgeon and then at Sharo
n. “Let’s take a little walk.”
Does he have another plan? Sharon wondered.
“What he’s saying is true,” Dr. Timbarrough nearly whispered in the quiet hall. “We’ve never seen anyone live longer than forty-eight hours once these bacteria reach the brain. But there’s always got to be a first. I’m ready to call somebody else. Is that okay?”
“So you’re not ready to give up on her?”
His expression, the hope in his eyes, was her answer. He called in Dr. Stephanie Einhouse, a neurosurgeon he knew would help attempt to save Katelyn, and Sharon called Ray, who headed straight to the hospital.
The first step in Dr. Einhouse’s plan was to drain fluids running like rivers through Katelyn’s brain. After a successful surgery, however, the external drain wasn’t enough and fluids pooled and rushed in again like an undammed lake.
“She’s not strong enough,” said one doctor when Dr. Einhouse’s next proposed step was to insert two internal brain shunts to relieve the pressure.
A ventilator was breathing for Katelyn, who was officially comatose. A tube was feeding her, and her immune system had nearly disappeared beneath the weight of chemotherapy. “She’s been too compromised already, and we don’t think she can handle the surgery.”
“So she’ll for sure die if we don’t do anything, and she might die if we do the surgery,” Sharon confirmed, her plan forming.
The doctors nodded.
“I’d rather her die trying,” she said, and Ray agreed.
After another successful surgery, the fluids continued to rise and fall like tides, and though Katelyn remained asleep, she was alive. Her parents manually kept her that way with the push of a button beneath Katelyn’s scalp, which activated a pump to drain the fluids and keep them temporarily at bay. Nurses had explained to Ray and Sharon how the soft button worked—any amount of resistance indicated too much fluid, meaning more pumps of the button were needed. The resistance behind every push, the bacteria’s determined stance, made Sharon and Ray fight even harder, believe even deeper.
Sharon knew in her heart of hearts that nothing was going to happen to Katelyn until God prepared her for it, but day after day, hour after hour of staring at her daughter’s face, wanting so desperately to look into her eyes, began to wear on Sharon’s spirit and she started to question her daughter’s destiny.
6
After three months of Katelyn’s silence, Sharon left her daughter’s side to stand in front of a large prayer map that she had hung in her hospital room. She stared at the hundreds of colored tacks pushed into towns, cities, and states across the country praying for Katelyn. Ray and Sharon’s family and friends, as well as their six thousand-member church congregation, had started a prayer chain that eventually left the country and reached people in China and Australia.
“Lord, don’t leave her like this,” Sharon pleaded, eyes on the pushpins, reminders that she wasn’t alone. “Lead her home or wake her up.”
Later that evening, as Ray wrapped Sharon in his arms and kissed her good-night, the door to Katelyn’s hospital room slowly opened and a nurse poked her head inside.
“Excuse me, there are two gentlemen here to see you,” she said.
It was nearly 10:00 p.m. Sharon looked at Ray and he shrugged.
Two men with dark, kind eyes walked into the room and introduced themselves—one as the pastor of a Baptist church in Holly Springs, Mississippi, the other a deacon. They had never seen these men before, never heard of their church, never been to their town.
“A member of our congregation requested a prayer for you and your daughter, Katelyn,” the pastor said, “and we felt like we needed to come pray over her.”
They had driven from Mississippi—from a town more than an hour and a half away—late in the evening to pray over their daughter, a stranger to them. Ray and Sharon stood speechless. The men studied their faces, their eyes, and their expressions with the concern and compassion of long-lost friends. They were born to love others, to feel their pain, to care deeply, and to heal with words. Sharon invited them further into Katelyn’s room and granted them permission to pray.
Before placing their hands over their daughter, the pastor said, “I can see now why we came to pray for you.”
He stared intently at Sharon, who could not hide her worries or fears in the presence of this man, this perfect stranger. “I’m here to tell you to stay strong in your faith in what God is telling you, not in what man is telling you.”
How did he know about the death talks they’d had with Katelyn’s doctors?
He didn’t.
And when the pastor added, “You go with what God tells you,” Ray’s faith, which had started to sink beneath the weight and into the darkness of their nightmare, was restored. God had been telling Sharon all along that He would prepare her, and since He hadn’t, Ray knew, once again, that nothing was going to happen to their daughter.
Over the next couple of months, Katelyn slept peacefully through countless brain surgeries and chemotherapy treatments until the bacteria crawled slowly, greedily, and victoriously into her brain stem.
“I’m not sure what’s going on with her,” said a nurse who saw on Katelyn’s monitor that her heart was beating 160 beats per minute. “I need to check the machine. There’s no way her heart is beating this fast….”
The nurse fumbled with the wires, convinced of a malfunction, but found nothing. She took Katelyn’s temperature, and when the thermometer read 107°F, she quickly called for help and Katelyn’s hospital room, once again, became a ballroom of frenzied doctors and nurses dancing to the beat of chaos. The music—frantic shouts, relentless beeps, slamming doors, voices of panic—spun through Sharon’s head, its chorus familiar and heartbreaking.
She closed her eyes and an unexpected calm, a sense of hope and knowing, warmed her, filled her mind and spirit.
It’s going to get worse before it gets better. It’s going to get worse before it gets better.
She repeated the words over and over in her mind.
This had to be the worst of it.
Sharon felt the heat from Katelyn’s skin, like rays from a small sun, inches before her fingertips touched the fire. She watched the monitor, listened to the flutter, the vibration of her daughter’s heart.
Things will get worse before they get better.
Three hours earlier, when these words had poured from the lips of a visitor, another stranger, Sharon knew that God was holding the strings. They were His words, His message. Just like the men who had visited a few months before, the visitor who came to see Sharon the day Katelyn first “stormed”, as doctors called it, with dangerously high fevers and racing heartbeats, had never met her. She had only heard her name but knew nothing of her story.
That visitor was a nurse from Le Bonheur Children’s Hospital in Memphis, where Katelyn had been transported to undergo all of her brain surgeries. One late, quiet night, as the nurse manned the hospital’s suicide hotline, the glow of the small TV in her office flickered.
At 2:00 a.m., the Sunday service at Ray and Sharon’s church was aired, as it was every week. The nurse watched as Pastor Sam Shaw talked about Katelyn, asked the congregation for their support, their prayers, and the nurse decided to make a visit to this girl—no face, only a name.
Something told the nurse she was the same Katelyn who had been admitted to Le Bonheur numerous times, the same girl she had tried to visit during one of her recent shifts. But Katelyn had already been transferred back to St. Jude.
After calling the church to find out where Katelyn was—to find out if she was still alive—the nurse showed up in her hospital room with a blanket that she and twenty other nurses had prayed over.
After a short visit with Ray and Sharon, she walked out of Katelyn’s room and into the hall, and Sharon followed.
“I appreciate you comin’,” Sharon said, and the nurse stopped and slowly turned to face her.
“This might sound crazy,” she said, “but this is what
I’m supposed to tell you.”
What does she mean, “supposed to?” Sharon wondered, and then she knew.
“Things will get worse before they get better,” the nurse said, and it was clear that the message was not from her. It was sent through her.
The nurse’s words, God’s message, stayed with Sharon for the next nine hours as her daughter’s temperature increased to 109°F, her heart trembling at 240 beats per minute, her blood pressure at 185/135. Sharon reminded herself of the pastor’s message—Stay strong in your faith in what God is telling you.
God had spoken through the nurse, and Sharon needed to listen, to obey.
She needed to keep her faith, realizing that these autonomic “storms” needed to happen before things could get better.
After every twelve-hour storm—where bags of ice were defeated instantly by the heat of Katelyn’s skin, where her heart raced, she panted with stubborn breath, and her body lifted in agony—her body would rest, lie calm and cool for three hours, before storming again.
Things are going to get better, Sharon reminded herself daily, hourly, with each rise and fall of Katelyn’s temperature, every fast and slowed beat of her heart. No cooling blanket or amount of ice could put out Katelyn’s fire; no medicine could bring down her temperature or slow her heart. Certain that the fevers were killing her brain, doctors also believed that a stroke would take her life long before the cancer did.
But Sharon’s mind wasn’t on death or stroke or heart failure. She knew that somewhere, deep inside Katelyn’s mind, she was still there, a part of her was still living. She believed that somehow, despite the storms, despite the doctors’ words and doubts and numerous talks of death, Katelyn existed.
Every time they discussed calling family or “making arrangements,” every cell of Sharon’s body, every ounce of her being, knew it was wrong. She forced every negative word, every bit of bad news, out of Katelyn’s room and into the halls—away from her daughter, whom she believed might be able to hear and understand everything.
Once Upon a Wish Page 6