Once Upon a Wish (10 page)

“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 Sharon. “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.

She couldn’t risk the word
death
seeping into Katelyn’s mind, crawling viciously through the part of her brain, her soul, that might,
on some level, remain hopeful. She had heard stories of people whose bodies had shut down while their minds remained wide awake. Sharon clutched onto that possible sliver of hope with both arms, trying to fill Katelyn’s silent life with as much normalcy as possible.