Lillian blinked at the thought—hard—and refocused, turning toward the laughter pouring from the kitchen as the sound, blending with the scent of fresh fruit, teased her senses. Peeking around the corner of their home’s small kitchen, she heard the sizzle of bananas dancing in a butter-lined pan as Tien and Bruno tossed and turned them, perfecting Bruno’s fried banana recipe.
Cooking together in their pajamas, whether making fried bananas late at night or breakfast crêpes first thing on Sunday mornings, which they had done together since Tien was six, was his and Bruno’s favorite pastime, their most treasured time together aside from assembling five-hundred-piece puzzles and playing complicated board games.
Once the bananas were on the plate, Tien, who enjoyed presenting meals almost as much as he did creating them, shook the bottle and formed a whipped cream happy face over the top of the bananas; one that made Bruno and Lillian laugh before eating the dessert and heading to bed.
Hours later, in the middle of the night, the phone rang. Lillian got up to answer it, her voice heavy with sleep, eyes only half open. “Hello?”
“I’m calling from Kaiser regarding your son’s labs. You need to get him to the nearest emergency room right now.”
Her eyes shot open.
The words high potassium snuck into her mind, dancing with her thoughts, distracting her panic, but those words and emergency room were the only ones she managed to hear.
We just need to get him in for some medicine that will lower his potassium, Lillian repeated to herself as she hung up the phone and rushed to the bedroom to tell Bruno about the phone call she had just received. Though it came sooner and more abruptly than expected, this was their next step.
Get Tien to the hospital.
Lillian and Bruno tried nudging seventeen-year-old Yune and fifteen-year-old Vanina first with slight nudges that didn’t rouse them, and then they pushed harder, keeping fear as far away from their voices as possible as they said softly into quiet rooms, “We are taking Tien to the hospital.”
“He’ll be fine,” Lillian reassured when the eyes of her two older children looked at her with question and concern. “His potassium is high, and they need to bring it down.”
She hoped it was as simple as that.
Tien crawled into the backseat of their car, and after placing a jacket over him, Lillian and Bruno drove straight to Kaiser Permanente Oakland Medical Center where they admitted Tien and doctors immediately hooked him up to a blood pressure machine and a heart monitor. Tien had never in his life had more than typical childhood illnesses—colds and the flu.
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.
4
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.”
5
For the next two weeks, doctors filled Tien’s body with high levels of liquid steroids, decreasing his immune system’s response to lupus by wiping out his red blood cells. Transfusions every couple of days replenished his supply, red life seeping from bags into Tien’s body.
Each steroid “pulse” caused hours and sometimes days of lethargy, days of rest—making Tien still and inactive in a way that Lillian and Bruno could hardly recognize their son.
On other days, on “good days,” Tien roamed the hospital’s halls, IV pole attached, visiting other children, walking with Josh, his roommate and new friend, to rent movies from the movie cart. Josh, who suffered from spina bifida, had lived a good portion of his life in hospitals and knew how to make time pass seemingly fast. He knew how to make the best of it, and he shared his knowledge with Tien every day.
Together, they spent hours playing video games and board games such as Life, In a Pickle, and Scrabble.
“Rostov,” Tien declared one afternoon, finishing his word with a perfectly placed letter “v,” the letter that would let him win a game of Scrabble against his mom.
“That’s not a word!” Lillian challenged.
“Yes, it is,” Tien said, explaining that Rostov was a make-believe place in one of his video games.
“Take a look at this, Dr. Rostov …” said an attending doctor to another as they caught the tail end of Tien and Lillian’s conversation. The doctor squeezed her eyes shut, shook her head, and said, “What am I saying? You’re not Dr. Rostov! The word Rostov is on my brain, and Tien, you have me saying it!”
He bursted with laughter.
“See? I told you it’s a word!” Tien shouted, and Lillian laughed.
The next day, Tien’s eyes remained closed through the morning hours and Lillian knew it wasn’t going to be a good day. They remained that way until midafternoon, until heat began to crawl slowly beneath Tien’s skin, boiling in his veins, agony forcing him to leap from his hospital bed.
“I feel like I’m on fire!” he screamed.
Lillian watched in horror, helpless, as Tien ran toward the sink, toward water that might put out the invisible flames dancing inside his body. With a loud swish, Tien leaned in to let it stream from the faucet and onto his head, face, and hands. He closed his eyes as water splashed against his face, held his breath as though being submerged. It dripped down the back of his neck, beneath his gown, but not deep enough, not where it belonged—in his skin, through his veins, pushing back against the violent waves of pain rushing through his body.
Tien paced his room, crawled into bed, splashed at the sink, paced again. Nothing worked. He could not escape his body’s fire, the internal flames. Lillian followed her son around the room, comforting him with hugs, wishing more than anything that she could put out Tien’s fire, ignite it in herself.
After what seemed like forever, doctors slid a needle beneath the surface of the flames, and like sand choking fire, a cool numbness flowed through Tien’s body, morphine taking the heat, the flames, the misery, with it. His eyes grew heavy as the fire died, and finally, they shut. And so did Lillian’s, pure relief flowing just as heavily through her.
During the past week, Lillian and Bruno had watched their son jump from his bed the very same way, racing to the sink, screaming as though being burned alive, every day. Every time they witnessed it, the pain that tore through his voice reached into their minds and their hearts, and all they could do was watch in pure agony. The chemo-like drug used to keep lupus as far away from Tien’s kidneys as possible had been working so far, and while the process felt like death, he was still living.
But just a few days later, with news from an attending doctor on duty, they weren’t sure for how long.
“Tien’s kidneys are failing,” said Dr. Laura Christie to Lillian only a couple of weeks after she and Bruno learned that their son had lupus.
There they were—words that could not be taken back, ever—four words that changed their lives forever. Their son was dying.
Earlier that day, after an exhausting night of Lillian watching Tien suffer through a high fever and watching and praying away rolling pain that had consumed his back and abdomen, doctors pumped Tien’s body with morphine and took an ultrasound of his kidneys.
A nephrologist at Kaiser had slowly slid a transducer across Tien’s stomach, his face serious, eyes, not blinking, studying the machine, and Lillian knew something was wrong. Very wrong.
Lupus, a serious yet mysterious disease, had been diagnosed, but the reason for Tien’s seizures, his high potassium and blood pressure, and elevated levels of creatinine had remained unknown. At the sound of the words kidney failure, Lillian’s strong outer shell finally cracked—crumbled to pieces in the area just outside of Tien’s hospital room, an area used for “privacy,” for receiving and dealing with unwanted news.
Until that moment, the moment Dr. Christie’s eyes revealed Tien’s critical situation long before her voic
e did, the moment that turned Tien’s illness from serious to life-threatening, Lillian had been able to keep her mind, her thoughts, and her emotions pointed in the right direction. She had been able to focus on taking steps, one foot carefully in front of the other, never looking back.
But in that moment, all she could do was turn back. Time worked against her as images consumed her mind, mental pictures of Tien—her healthy, soccer-playing, food-loving, full-of-life little boy who had always dreamt of traveling to Paris. That little boy now lay still, comatose, in a hospital bed with failing kidneys.
Lillian sobbed deeply, invisible pain smothering her chest, her stomach, her body.
“I need to call Bruno,” she managed, and when he arrived at the hospital twenty minutes later, she buried her reddened face into his chest and he looked straight ahead, silent, her tears enough for them both. He needed to be the strong one in that moment, the one to look only at the next step as Lillian always had. That next step, whatever it might be, needed to remain Bruno’s only focus.
“We need to get him to UCSF Medical Center,” said Dr. Christie. “We put a call in to Stanford University Medical Center and to UCSF, the only two hospitals in Northern California equipped with pediatric dialysis, and UCSF can admit Tien now.”
University of California, San Francisco, Lillian thought. This was a whole new playing field. They were being transferred from a reputable hospital with an excellent pediatric unit to a research-based hospital known for providing the highest level of care to critical patients.
Their son was the critical patient.
“Should we call Yune?” Lillian asked Bruno, looking up at him with eyes full of tears, her face, red and broken. She had planned to travel that summer with their oldest son, Yune, to Romania and Paris to visit family, but when Tien became ill, she canceled her plans and encouraged Yune to go without her.
When Yune left, Tien was at their local Kaiser hospital, a place Yune assumed would send his brother home the next day with some medicine to fix his high potassium. He never imagined Tien would become so ill. When Yune heard the news, he locked himself in the small bedroom of his cousin’s home in Paris where he was staying. He remained there for days, not speaking to a soul, then made his way to Notre Dame de Paris, walked through its towering cathedral doors, and knelt.
Once Upon a Wish Page 24