Once Upon a Wish (40 page)

Lillian and Bruno watched as they took his vital signs, then handed him cup after cup of Kayexalate, a thick, brown, pasty medicine to help lower his blood pressure and potassium level. Tien closed his eyes and swallowed, one gulp after another, his mind working hard at convincing his stomach to keep it down.

“You’ve gotta keep drinking this!” a nurse shouted at Tien after noticing that he had sat it down on the little table beside him. He needed a break. Lillian and Bruno studied her, trying to analyze the panic in her voice.

It was 5:00 a.m. He’d been drinking the liquids for more than two hours. Tien slowly blinked his tired eyes, picked up the cup, and squeezed them shut once again as the bitter, chalky taste invaded his mouth, and swallowed. It seeped in, ventured slowly, working against Tien’s body to lower its potassium.

After five days of getting Tien and his potassium level stabilized, doctors released him from the hospital with a strict regimen of oral steroids to help keep his body’s blood pressure and potassium at the levels they were when he was released.

Unlike cancer and other diseases with clear warning signs, easy diagnoses, lupus remained a mystery in so many ways to doctors, the sneaky way it maneuvered through its prey, the way it avoided showing up in some tests, tricking the results of others. After
numerous tests and a constant decrease in Tien’s potassium level, doctors determined that this ugly autoimmune disease had zeroed in on Tien’s kidneys, determined to shut them down.

But they weren’t going to let it. They sent Tien home that day to continue his normal, active life, with daily doses of steroids and plans to monitor and frequently test that his kidneys were surviving in the midst of this disease.

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The next morning, Tien woke up with a headache, a feeling that his head was splitting in two. It pounded violently as he pressed on each side, hoping for some relief.

“It sounds like your blood pressure might be high,” Lillian said, and she took him to see a nephrologist later that morning.

“His blood pressure is fine,” said the doctor, who sent them home with peace of mind and an order to take Tylenol for Tien’s headache.

Tien ventured up the wooden stairs of their home to his bedroom and sat on the floor, waiting for his mom to return with the Tylenol.

“Mom, my head hurts
so
bad,” Tien said as Lillian sat beside him on the floor. He held his head in his hands, squeezing gently and scrunching his eyes, his pain pouring into his mother. She rubbed his shoulders and draped an arm around them before placing two pills on Tien’s tongue.

“This should help,” she said, lifting a glass to Tien’s lips.

Water glided gently down the clear glass, but before it reached Tien’s mouth, before the pill was washed away, taken into a body so desperate for relief, Tien looked to the ceiling, a place of concentration, Lillian assumed, but then his eyes kept going.

They reached the ceiling, then looked further back, further and further, until only the whites were showing, and then his eyes began to shake, then his face, his arms, his legs, his body.

“Tien?” Lillian asked quickly, unable to chase panic away with calm thoughts. Looking ahead to the next step, to the future rather than the moment, was not an option. This was the moment they were in, the moment they were forced to face, the moment they needed to get through.

“Tien!” she almost screamed, her voice echoing down the hallway. “Bruno, call 911!”

Tien’s body violently convulsed in Lillian’s arms as Bruno clumsily pounded the numbers into the phone. Immediate screeches of sirens rolled like waves through town from the fire station that was just two blocks away, pouring down city streets, crashing between houses and into Lillian and Bruno’s neighborhood. After three minutes, a lifetime, of shaking, Tien’s small body rested, his mind, gone. When Bruno heard paramedics plunge through the front door, he carried his limp son down the stairs and watched as they placed him into the ambulance.

Ten minutes into the drive to the hospital, every minute filled with a deepening sense of worry that Tien might never wake up, Tien’s body began to move with more than just the motion of bumps in the road.

“What happened?” he said, eyes hiding halfway beneath their lids. “Where am I?”

“You’re in an ambulance,” Lillian said gently, rubbing his face, leaning in to kiss his cheeks.

“I’m fine; let’s go home,” Tien said.

One of the EMTs asked, “Can you see me?”

“Yes,” Tien answered, eyes closed. “You’re a man.”

Lillian smiled with relief. Despite his closed eyes and his weak voice, Tien’s sense of humor was already surfacing.

“How many fingers am I holding up?” the paramedic asked, dangling three fingers in front of Tien’s face.

“Four,” Tien guessed.

“Nope,” the EMT said, holding another hand in front of Tien’s closed eyes, two fingers showing. “How about now?”

With everything inside of him, Tien tried to open his eyes. Fingers moved and blurred as one, jolting with the bumps in the road, trailing across the slight vision his mostly closed eyes would allow.

“Three,” he guessed again.

This guessing game kept Tien’s spirits up until they pulled into the hospital, where paramedics wheeled him inside and another seizure took over his body. Lillian watched as her son’s eyes rolled back, wanting desperately to snap him from what she knew was coming.

“Tien!” she nearly screamed.

“Tien! Tien!” she repeated, hoping her voice, its panicked plea, would be enough to stop the seizure. She rubbed his back gently, hoping to soothe it away.

But nothing worked. His body jolted and shook with more vigor for more minutes than the last. With one quick movement, nurses snapped the metal rails of Tien’s bed into a higher position to keep him from falling, and Lillian stood with them, waiting for this dance, this victory dance of his disease, to end.

When it did, they wheeled him into his own room, Lillian trailing behind. She never left his side. She stared at the vacant face of her little boy until the wee hours of the morning, waiting for Tien to wake up. This kept Lillian’s mind where it needed to be—right there with her son. Tears would not cure him or change what was happening. Keeping a strong mind and moving forward were her only options, her only ways of getting through this.

Bruno had gone home to be with Yune and Vanina through the night, and every ounce of him ached with the hope that Tien
would turn his father’s words into reality when he returned the next morning.

“He’ll be fine,” Bruno had tried to reassure Lillian before leaving the hospital. “He’ll wake up and everything will be okay. He has good color in his cheeks, see?”

Lillian rubbed Tien’s cheeks, kissed him, and thought only of him as his room quieted from the sound of nurses coming and going. It had been only a week since Tien was running on the soccer field, kicking the ball, cheering with every goal made.
How did we get here?

Their family had entered a nightmare.

And now it was just the two of them—Tien and Lillian—in the dead of the night, waiting. On some level, Lillian knew her son was fighting hard against his body, against its disease, pushing his mind to resurface through its consciousness, waiting to wake up.

At 4:00 a.m., it did. Tien wiggled the way he had every morning of his life, wiggling from sleep, from dreams, and on that day, from a short-lived coma.

“You’re in the hospital,” Lillian said gently, almost immediately as Tien’s eyes scooted around her face. But he didn’t look around the room with questioning eyes as she had thought he would.

In her imagination, she pictured Tien waking up disoriented, scared, and full of questions, but instead, he woke up like he had every other morning of his life, ready to embrace the day, make it as good as possible, and enjoy every moment. He was the kid with a child’s heart and, at times, an adult’s maturity.

“You had a couple of seizures,” Lillian explained gently, “and the doctors are trying to figure everything out.”

It was 4:00 a.m., and doctors and nurses had started coming
and going, smiling at their little patient who had pulled through the seizures, who was sitting up in bed with tired smiles and a sense of peace about his situation. He and Lillian spent the rest of the morning talking, playing board games, and watching TV, their minds taking them from the confines of Tien’s hospital room to other places, places of “normal.”

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