1
PARIS, TIEN THOUGHT.
Lights twinkling from the city to the sky. Streets filled with people on bikes, pedaling through the smell of rising dough, of baked croissants and French baguettes from local patisseries. Dogs sitting proper at the heels of their owners at café-lined roads packed with cars and honking taxis, people blowing cigarette smoke from their lips, words in French rolling from their tongues.
Will I speak French by then? he wondered.
Would Tien’s father, Bruno, have taught him more than simple words like bonjour and merci?
Would he be able to say to a waiter, “Je voudrais le poisson frais du jour”?—“I would like the fresh fish of the day”—and compare its flavor to that of the fish he had pulled from the South Pacific in Tahiti with his family when he was younger? Would he be able to ask for frog legs and escargot with, “Je voudrais les cuisses de grenouille et les escargots”? He wanted his taste buds to learn the difference between France’s beef bourguignon and his father’s, wanted to see if its chefs could perfect an egg the way Bruno perfected an egg.
Tien wanted to immerse his senses in the city’s tastes and smells, its sounds and feels. He wanted to see the rolling hills of France’s countryside, hills that, in his mind, were like those of Napa Valley, endless green waves of mountains. He wanted to climb the Eiffel Tower and compare the City of Lights to San Francisco, the biggest city near his Berkeley, California, home. He wanted to compare his hometown’s Victorian houses to the old, historic homes of Paris, see the differences between ancient cathedrals and the Catholic church where he attended Mass with his mom, Lillian. He wanted to hear the city’s live music pouring down its busy streets and taste the flavor of fresh crêpes and coq au vin that he would learn to make.
During the nine years of his life, Tien had spent many of them imagining such a place, dreaming of going there. His older brother and sister, Yune and Vanina, had traveled to Paris before Tien was even born. Their experiences fueled his desire, ignited his imagination, with stories of cruising the Seine by boat, staring the Mona Lisa in the eye, indulging in French food, and viewing the lights of Paris from the observation deck of the Eiffel Tower.
When social worker Steve Baisch asked Tien what he would wish for if he could wish for anything in the world, he didn’t have to think twice.
Tien smiled.
“I want to go to Paris, France,” he said weakly, and Steve thought, Really? Paris? “That sounds wonderful!” he said, smiling, as technicians hooked Tien up to the machine.
It was time to start dialysis.
2
Before making this wish, Tien listened to the wishes other children on dialysis were making.
“I’m going on a Macy’s shopping spree,” said one little boy, hooked to another dialysis machine near Tien, just a few days before. “When my dialysis is done, I’ll get out my laptop and show you pictures of the things I want to get.”
Tien smiled, imagining what it would be like to wander the endless aisles of the department store, clothes, shoes, and toys at his fingertips. But then, through his imagination, came the sounds and scents of Paris, the stories from his siblings, the voice of his grandfather telling him how he had met Tien’s grandmother in the world’s most romantic city.
While studying law at the University of Paris, Tien’s grandmother, Theresa, met his grandfather, Yin, when Yin was attending École Nationale Des Ponts et Chaussées—National School of Bridges and Roads—the world’s oldest civil engineering school. They had both grown up on the small island of Tahiti but had never met, and together, learned about and fell in love with the foods of France, a passion they passed down to their nine-year-old grandson.
As Tien’s dialysis machine grabbed blood from his body, circling and placing it back inside his veins, his mom watched and thought of her own mother, Theresa, who had passed away before Tien was born. Twenty-two years ago, when Lillian left her Berkeley home to live with her mother for a month in Hawaii, where Theresa lived the last of her days near her sister and her best friend, Lillian never imagined that two decades later, she would be holding the hand of another loved one hooked to dialysis, the small hand of her young son.
Lillian thought of her mother fondly as she remembered the serious, intellectual nature of Theresa, the goody-two-shoes reputation she had as a devout student at the University of Paris. Her father, Yin, on the other hand, was a shoot-from-the-hip kind of guy, a man who loved life and didn’t take it too seriously unless he needed to.
Brought up on a French-speaking island by parents who spoke only Chinese, Yin could trick his parents into believing his grade school progress. He’d offer up phrases like, “Vers le haut de la colline, un, deux, trois, quatre, Napoléon est parti en Egypte”—“Up the hill … one, two, three, four … Napoleon went to Egypt”—disjointed sentences combining unrelated words spoken with beautiful French pronunciation—when his parents insisted he demonstrate his progress of learning the language. They believed every word.
Yin’s blood ran through Tien, even as it left and re-entered Tien’s body. Forced to sit for three-hour stretches every day, Tien suppressed his love of playing games and running outdoors with his friends. He needed to push those thoughts, that life, away for those hours. Just like his grandfather, he was serious when he needed to be, and he was devout like his grandmother.
With his head tilted perfectly still, blood flowing, Tien sat for every long dialysis session, studying with his hospital teacher, Alice Cassman, listening to stories from his mom, his favorite about how his grandfather fooled his parents into believing he could speak French.
Tien laughed, shaking just slightly to avoid disturbing his central line, as this story took him out of the world he was in and into the “normal world,” the world he had fully been a part of just a couple of months before—a world where evenings were spent playing games with his family and the biggest concern of the day was deciding which friend to play with after school.
Now, every Monday, Wednesday, and Friday, when Lillian or Bruno took Tien to dialysis, they left that world when the hospital doors slid closed behind them, leaving “normal” outside along with the bright, California sun. The sounds of cars taking people to and from work and school, dance lessons, and soccer were on the other side of those doors as Tien and his parents made their way to the pediatric dialysis center, where this other world existed.
Dreaming of Paris or a day at Macy’s brought these kids to that other world, that “normal” place, and kept them there through their long hours hooked to dialysis machines.
“I want a French culinary experience,” Tien had said to pediatric nephrology doctor, Dr. Anthony Portale, before sharing his wish with Steve.
Their parents found different ways to cope and bring “normal” back into their lives when they could. From the time Tien was admitted to the hospital, Lillian had found comfort in the other families who were part of this new, unfamiliar world, a world where life could be taken at any moment, where a single moment could change everything.
Lillian was fascinated during long, sleepless nights by another mom with a sick child, who told stories of her truck-driving days—the night she ventured down haunted sections of highway, the time she carried a light truckload of ping-pong balls through a windy section of the Rocky Mountains.
Small talk in the halls, hugs from other parents who had a deep, mutual understanding of their situation, bridged the gap between these two worlds for Lillian and Bruno and became necessary distractions.
Visits from strangers and new friends in the dead of the night reminded Lillian and Bruno that they were not in this alone. The night they got a phone call telling them to rush their son to the nearest emergency room was not uncommon in this world, nor were sharing their concerns and telling their story to other families living similar nightmares just down the halls.
Tien, Lillian, Bruno, Yune, and Vanina left the comfort of their safe, normal world, their previous life, abruptly with no warning.
3
A few months before, Tien had slowly placed his hands, palms down, on the flat, hard, wooden surface of a table in the middle of the gymnasium. Blocking out the stares of his teachers, the voices of other performers, Tien slowly pushed, the strength of lifting all his weight shaking in his arms. Legs moving toward the ceiling as if being pulled by rope, Tien’s body became a flawless, still line as he perfected his well-practiced handstand.
He held his position as the teachers of his circus class stared, his sweat dripping, before slowly, gracefully lowering his body and standing upright on the ground to receive smiles and applause. The teachers, who were part of Splash Circus, a group of young performers that entertained audiences throughout the Bay Area, were auditioning for new members. They wrote quiet notes as Tien prepared for the next act in his audition. He walked to the long, thick ropes hanging from the ceiling and grabbed on.
Looking up, he focused as one hand reached above the other, one at a time, slow and meticulous, until he reached the top. Using the same strength it took to climb, Tien slowly, gracefully, lowered himself down the length of the rope. He climbed up, down, up, down, demonstrating the poise and endurance of any other nine-year-old circus performer before moving on to his final audition performances.
From the age of three, Tien had practiced Capoeira, a Brazilian art form combining martial arts, music, and sport, and the technique, dedication, and strength it gave pounded through his body as it flipped, end over end, hands leading the way, across the floor in perfect back handsprings, twirled with perfect cartwheels past the teachers, and balanced perfectly on the shoulders of others during partner acrobatics.
When he was finished, Tien stood proudly before his teachers, panting and smiling, hoping they would select him for the circus.
After the audition, Tien gathered his things and walked to meet his parents as a pain, achy and familiar, crept through the heel of his foot, traveling slowly, purposefully, through its length to his toes. He grabbed at his foot midstep, massaged it quickly as it reached for and touched the ground, and then he grabbed for the other. It was a pain that he had learned to ignore, learned to live with over the past several weeks, because though it would go away briefly, it would always make its return.
He had learned to run through the pain during games of zombie tag at recess with his friends, let it dangle when hanging from the monkey bars, and kick through it during gymnastics and circus class. It would leave and return in the heat of the day as Tien played outdoors with his neighborhood friends, the hot sun pulling at the pain, intensifying it.
His feet would ache during bamboo sword fights and throb during “survivor,” a game he and his friends made up that involved eating cherry plums, sour grass, and dandelion leaves from their backyards in order to survive.
One morning a few weeks after auditions, after learning that Tien had been accepted into the circus, Lillian gently touched his cheeks as his eyes slowly opened from the night. Beneath her fingers, Tien’s skin, warm from sleep, puffed around his chin, his forehead, and the area below his eyes. She squinted and looked closer and felt deeper, as her fingers sank into the soft yet firm skin on his face.
She called Tien’s pediatrician, Dr. Randy Bergen, and scheduled an appointment for later that day. Something wasn’t right. His achy, swollen feet and puffy face were trying to send a message to Lillian and Bruno but not a clear one. Tien was enjoying third grade, loving the math club he had joined, and playing with his friends after school every day—what could be wrong?
“It’s possible that you have lupus,” said Dr. Vivien Igra from Dr. Bergen’s office, the only doctor available to see them right away.
Lupus, Lillian thought, her body and heart instantly numb with worry, sickened with fear. Flannery O’Connor.
Through the American novelist’s words, Lillian had learned in high school about life’s cruelties and hardships, many of them derived from the author’s experience with the same disease—the one with which her son had possibly just been diagnosed.
Sisters from Lillian’s Catholic high school had read O’Connor’s work to their students, opening their eyes to life’s realities, from serial killers to human greed to morality and ethics. The moment Dr. Igra uttered “lupus,” Lillian instantly thought of the fourteen-year-battle O’Connor had with the disease. She remembered how lupus sometimes became a character in O’Connor’s writing because of its dark, cruel existence in her life. At the time, Lillian was intrigued by the disease’s benevolence, its loosened grip on O’Connor’s life during remission, until it took it from her in 1964.
O’Connor’s death was all that Lillian knew about lupus.
She didn’t know that her son’s body was about to turn against itself, eating away at perfectly healthy tissue and functioning organs. She didn’t know the disease’s potential to wipe out any part of the body, from the skin to the joints to its most important organs.
Lillian didn’t know that the rashes forming on Tien’s skin, rashes she and Bruno thought must be from Tien’s allergies to strawberries, chocolate, and citrus—maybe Tien drank a glass of lemonade—combined with his puffy face and aching feet were all indicators of lupus.
“Can you move this for me?” Dr. Igra had asked Tien before suggesting he had lupus. She moved Tien’s feet gently, touching the small joints near his ankle bone. He sucked in his breath, pain rolling beneath the doctor’s fingers.
The pains Tien had been experiencing in his feet could have stemmed from anything, Lillian and Bruno had told themselves—playing in the dirt, tripping over rocks, climbing and falling from the branches of trees. He was a classic boy, an active nine-year-old. He was playing soccer in a summer soccer camp program for the third year in a row, and he was one of his team’s best, most aggressive players.
“Does this hurt?” Dr. Igra asked, tugging at the joints of his hands.
The small bones throbbed with the doctor’s slightest touch.
Aches in the small joints of the hands and feet, rashes, a swollen face—lupus.
She ordered labs to be done, an Antinuclear Antibody (ANA) test that would indicate the presence of an autoimmune disease, so Lillian took Tien to get his blood drawn later that day.
“We’ll call you with the test results,” Dr. Igra said, adding that, if the ANA test came back positive and they determined he had lupus, treatment would involve ointment for the rashes, medicine for the aching joints. Simple.
Even if the results came back positive for this disease with no cure, the treatment would be easy and Tien would be fine. Lillian was comforted by the doctor’s words. O’Connor’s suffering would not be her son’s.
The next step was waiting, the step after that, dealing with those results. Lillian had built her life around taking one step at a time—it was the only way she knew to function, a way of life echoed from past generations in her family. As a young girl, Lillian’s mother had shared stories with her about the hardships her mother and grandmother faced in China—hunger and war—and the way they shepherded their families, did what they needed to do, and faced what came their way with unending strength and courage.
Having never thought about where it came from, Lillian journeyed through life the same way, from the time she went through law school in the early 1980s and faced the challenges of being a female law student at that time to the situation they were in now.
This would be no different.
For past generations, taking one step at a time meant figuring out how to put meals on the table. For Lillian during law school, it was studying as hard as possible and passing the bar exam. Now, it was getting through one test, one lab, one result at a time.
3
They got Tien’s blood drawn for the ANA test on Father’s Day 2008. After their hospital visit, they went out to celebrate the day with brunch in Walnut Creek, a city near their hometown of Berkeley. As waiters placed plates heaped with delicious-looking food in front of them, as Bruno opened his handmade card from the kids, Lillian had to work every second of that day to keep her mind present—there with her family, not at the hospital where her son’s blood was being processed, not drifting into the unknown future.
She spent that day and the next living with her mind in two places, split between thoughts, consumed by two different worlds—the world where Tien lived as a healthy child, growing and exploring, loving life, and the other world with the disease that killed Flannery O’Connor.
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 voice 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.
Yune closed his eyes and blocked out the hushed voices of locals and tourists, removed himself from the cathedral’s beauty—its golden murals, floods of rainbow pouring through stained glass—and entered a place in his mind, his heart, that would let him connect to Tien from five thousand miles away.
He prayed with everything inside his soul, asking God to save his little brother, heal his kidneys, and bring him home. He felt the heat of the tiny candle in his hand, the dance of its flame, connect their spirits, an ocean apart. He had bought Tien a miniature sculpture of the Eiffel Tower, a small piece of Paris, which he prayed he would be able to place in his brother’s hands and see the smile it would bring.
From the time he was a young boy, Yune and Vanina had taken Tien on imaginary trips to Paris with their stories; they let him taste the food, see the sights, experience the culture. And as Yune sat in the serenity of Notre Dame, amid the enormity of its healing presence, he prayed with everything inside of him that Tien would live to one day visit Paris himself.
The power of Yune’s prayer traveled across the ocean and into Lillian’s heart, where the prayers of many others were living. From the moment Tien had become ill, friends and family from Berkeley to Tahiti, from all religious backgrounds—Buddhist, Catholic, Wicca, Jewish, Tibetan Buddhist—were praying for him. Naama, a friend Tien had since preschool, traveled with her grandmother to Jerusalem, Israel, where they made a special trip to the Wailing Wall to pray for Tien.
In his or her own way, each family member and friend had been praying to their higher power for Tien’s healing. Deep down, Lillian and Bruno believed those prayers would be answered.
They had to.
Until that day came, Lillian knew she needed to continue marching through the unknown with one foot in front of the other. Unable to fully wrap her mind around everything, she focused on the next step—getting Tien to UCSF. She couldn’t focus on anything beyond. It would kill her, and so would the “what ifs”—What if Tien doesn’t wake up? What if the doctors at UCSF can’t do anything for him?
Let’s just get him to UCSF, she told herself. That was the next step.
6
It was midnight when they got Tien transferred and admitted to UCSF, where he remained in a deep sleep, despite the war taking place inside of his body. Lillian stayed at his side, his hand in hers, for the next several hours until Tien’s eyes scooted beneath their lids, dancing as though dreaming, before flittering open, slightly, to look at his mother.
“What, sweetie?” she asked after Tien mumbled something so quietly it sounded like a whisper, a secret. Was he talking quietly or was her mind, awake for the past two and a half days, trying to sort words through fog?
“What did you say?” she asked, getting so close that the warmth of Tien’s breath tickled her ear. She desperately wanted to know.
“Why are you so close?” he whispered.
“I want to hear you, and you’re talking very softly,” Lillian said, smiling, rubbing a hand over his soft, black hair.
“Really?” he asked, his voice much louder in his mind. “Can I have a hug?”
Lillian smiled and reached down, wrapping her son in her arms. She never wanted to let go. Eyes closed, she held him tight as he whispered, “Mom, I can’t feel you.”
Lillian opened her eyes as the past few weeks flashed before them. In all the years she had spent watching her children and their friends rehearse and perform circus acts, she had always been the most fascinated with tightrope walkers, the art of pure concentration, unwavering focus.
For the first time, in that very moment, Lillian realized how their lives had become a similar act, a delicate balance, one foot carefully placed before the other.
One stumble and the only way was down; for circus performers, down meant landing safely in a net—for Tien, down meant death. Lillian and Bruno had kept their chins high, their eyes looking only at the safety platform on the other side. Looking down had never been an option.
But when Tien closed his eyes once again, entering another world, a place where no one else was allowed, Lillian wondered if Tien was about to fall. Was that moment his disease’s way of letting his spirit—the part of him that could no longer feel her touch—wake up to say good-bye?
She was not ready to look down. They hadn’t made it this far to fall. The new walls surrounding them, the new doctors and nurses, the new ideas and untried treatments, let her mind take another mental step forward to stay safely on the rope. This hospital—this new team of doctors trained to care for the most critically ill children—would be a new beginning for them, a new set of options, the next act.
Lillian held Tien the rest of the night.
The following day, Bruno and Vanina called to tell Lillian they were going shopping. They were going to buy something they knew Tien would love very much—a Nintendo DS.
They arrived at the hospital and presented Tien with their gift, their incentive for him to wake up.
“If you wake up, you can play!” Vanina and Bruno teased.
Tien’s eyes had danced beneath their lids several times since then, his body almost twitching awake, but he remained nearly lifeless in his hospital bed. His face, his hands, and his body, succumbing to the cruelty of his disease, became puffier, less recognizable, by the day.
“Wow! Look at this!” said Dr. Allon Beck, an intern whose booming voice echoed in Tien’s room, into his ears and through the waves of his brain. “Let’s turn it on!”
Somewhere, deep within, the doctor’s words triggered something that ignited Tien’s mind and awoke his passion for games. He wanted it so badly that his mind finally shoved its way through, commanding his arms, his legs, his voice.
“Wow, Guitar Hero!” Tien said, groggy, squirming in his bed.
It was the second night after being admitted to UCSF, and he woke up long enough to see the DS, to imagine pushing its buttons, playing its games. And then his eyes shut once again. But that was enough. Tien was still there—somewhere in the depths of his mind was Bruno and Lillian’s son, Yune and Vanina’s little brother.
7
Other than the brief moment when Tien, unable to feel his mother’s hug, had, in Lillian’s mind, woken to say good-bye, it had been days since his parents had seen any sign of life in him. When they admitted him to UCSF just a couple of days before, his body had started the process of surrendering to its attacking disease. His stomach had begun leaking fluids; his skin had turned pale, puffy, and cool to the touch.
Day after day, Bruno and Lillian watched Tien sleep, subtle twitches of his body the only indicator that he was still there, his mind still close to the surface. He hadn’t yet fallen into the depths, the static slumber of a long-term coma, and every movement, no matter how small, gave them hope that he would soon wake up.
When little, involuntary movements in Tien’s body gradually became intentional, Lillian and Bruno knew that, even in sleep, Tien’s body and mind were pushing back against his disease.
Doctors at UCSF had immediately started Tien on dialysis with hopes that his body would respond, and they had all waited patiently through days of failed dialysis, watching for a single drop of urine in Tien’s Foley catheter, any indication of kidney function.
Nothing.
On the third day came the first drop, the first indication, dripping into Tien’s Foley bag. The liquid was black, darker than blood, but it was there. Lillian watched as it fell, one drop after another, slow and murky, into the clear bag. She and the nurses had never been so excited over the sight of urine.
Dialysis was not yet working, but those drops, combined with Tien’s increased body movements and eventual ability to speak and sit up with help from his father and his nurses, gave them all hope that soon it would. To test for the possibility of kidney regeneration, doctors performed a biopsy and stared in disbelief at the results.
“We believe Tien has a disease called Antiphospholipid Antibody Syndrome, or APS,” a group of doctors from the hematology and rheumatology departments of UCSF said to Tien’s mother. They had taken Lillian from Tien’s room and into the common area where all bad news was delivered. Before a word was even spoken, their faces, grim and gray, looked as though they were about to reveal news that Tien had only minutes left to live.
Instead, they told her that the biopsy revealed millions of micro clots in his kidneys, indicating APS.
Millions, Lillian thought. How could millions of anything possibly exist inside the kidneys of a small child? She knew the danger of one clot, a single threat, lodging itself in an inoperable location, but the thought of millions inside her son’s body, threatening release at any moment, was unfathomable.
The doctors explained that, while it is not uncommon for people with lupus to develop APS and for those with APS to develop lupus, the two do not always go hand in hand.
“Tien has unfortunately pulled a terrible roll of the dice,” said one of the doctors.
Lillian tried to absorb the doctors’ words, understand their meanings, before Dr. Paul Brakeman came in a while later to talk with her about the next steps for Tien. After breezing by the mention of two other patients with these simultaneous diseases, Dr. Brakeman tried to continue talking about what was next for Tien, but Lillian stopped him.
“What happened to those other two patients?” she asked, fearing the answer but at the same time needing it. “Did dialysis and plasmapheresis work for them?”
Sensing his hesitation, Lillian stared him down.
“They didn’t respond to treatment,” the doctor said simply, offering nothing more, but there was nothing simple in his answer. Was Tien’s destiny also death?
Every set of lab results were coming back with black and white, numeric proof that Tien’s kidneys were not improving, his lupus had not been quieted, and dialysis was not yet working. Even if dialysis started to work, making Tien well enough to leave the hospital, lifelong treatments or a kidney transplant were his only options of surviving.
As if the odds against him were not bad enough, his body was now attacking from another angle, with another autoimmune disease, one determined to fill his body with clots that could lead to a stroke or heart attack at any given moment.
But in spite of his diseases’ attempts to completely take over his body, Tien, who was taking liquid steroids and sitting through three hours of dialysis a day, in addition to two hours of plasmapheresis—a process to clean antibodies from the blood—seemed to be improving daily, with an increasing ability to speak, sit up, and roam the halls in a wheelchair, despite his numbers and the results of his tests.
“We need to knock out his immune system,” said Dr. Portale, explaining that a chemo-like medicine would work to wipe it out, taking away his body’s attempt at attacking any more of its major organs.
But Bruno and Lillian were not ready for that. They saw the look in their son’s eyes, the way he had improved slowly but steadily in the past week, the way his spirit had woken up, the way his body was fighting back—despite what his labs were saying.
“Just give us a little more time,” Lillian said, speaking from her heart, where intuition, her mother’s gut instinct, lived and screamed, Just give him a little more time!
One more day.
It was Tuesday, and Dr. Portale, who also maintained hope based on Tien’s visible improvements, was giving him until Wednesday to let the progress that appeared on his patient’s face, in his eyes, and in his smile, show up in his blood and translate to acceptable numbers on his charts.
And the next day, they did.
“His labs are getting better,” said Dr. Portale of Tien’s very next set.
He smiled down at paperwork in his hand that proved they had made the right decision. It was the end of their second week at UCSF and the first bit of good news they had received since Tien’s very first seizure, his body’s first defeat.
8
Tien continued taking steroids and sitting still for three hours a day as dialysis and plasmapheresis cleaned his system, filtered his blood. On August 8, 2008, he was sent home to continue with medications and visits to UCSF three days a week for three hours of dialysis per visit.
The moment the hospital doors slid open after Tien was discharged, he was wrapped in the city’s foggy embrace. He smiled as the smell of San Francisco’s thick, cool air teased his imagination. He knew that just beyond UCSF was a big city to explore, a city he had rarely visited—a city he knew he’d be visiting three times a week for dialysis. It was a city waiting to be discovered.
For several weeks, Lillian and Bruno helped nurses lift Tien from his wheelchair and lay him gently on the bed next to his dialysis machine. After three hours of lying still, dreaming of Paris, remembering his grandmother through his mother’s stories, and catching up on homework with his pediatric dialysis teacher, Alice Cassman, Tien would venture into the city with one or both of his parents.
They visited its giant malls, got lost on its twisted streets, ate in its big restaurants, sat in its unruly traffic. Coming from the smaller, suburban city of Berkeley, Tien felt like a big city boy. He left his Berkeley home every Monday, Wednesday, and Friday, early from his fourth-grade class, to drive to the big city and undergo dialysis before exploring this other world.
His schedule, which instantly became his life, blended many different worlds—the world where he was well and the one where he was ill, the one with his Berkeley home and the one with the big city that became his home away from home, his world full of teachers and friends and “normal” things like school and homework, and a world where the kids around him were making wishes through the Make-A-Wish Foundation because they had beaten death and lived to do so.
The kids at school lived “normal” lives and didn’t know anything about staring death in the face, while the kids in dialysis talked about making wishes that would allow them to feel part of that “normal life” again.
After talking with social worker Steve Baisch about his desire to visit Paris, France, for a culinary experience, Tien and Lillian got a visit from Dr. Portale, who was a master of breaking bad news in the best way possible—with just the right amount of sympathy and the necessary amount of truth.
“There’s no way you’ll be able to go to Paris,” Dr. Portale said gently. It hadn’t been long since Tien had started dialysis, and his body was still very weak from its fight to hush lupus. “It’s too far and you’re really in no condition to travel. If you’d like to go somewhere, the furthest you can go is a couple of hours away.”
“Ooooh, maaaaan!” Tien said, smiling, trying to roll with this news, as Lillian rubbed his head, lips pressed together. He was alive and responding well to dialysis, so nothing, aside from bad news about his health, could bring Tien down. “That’s okay, I’ll think of something else!”
A few months later, volunteers from the Make-A-Wish Foundation called with the next best thing. “We know you wanted to travel to Paris, but since you can’t, we want to bring Paris to you,” they said.
Tien smiled the same smile that snuck across his face with every thought of Paris lights and the city’s smells and food. He didn’t know exactly what that meant—all he knew was that Paris was coming to him.
Tien had been on dialysis for six months, long enough to return to fourth grade and run and laugh through life the same way his friends and classmates did. He had gone from being wheeled into dialysis every day to walking in, went from pausing on the landing of his stairs at home to racing up and down them. He wasn’t well enough to travel to a country across the world, but he was finally well enough to experience it.
A couple of weeks after talking to Make-A-Wish volunteers, Tien was touring Paris through the sights and scents of its most delectable food, living the dream that had lived in his imagination for so long—the dream that had started as a very young child and continued through his long hours in dialysis. He was suddenly in the place he had visited through his brother’s and sister’s stories, the place from which Yune had sent healing prayers when Tien went into kidney failure. His dream, his wish, was finally coming true.
Paris was still 5,000 miles away, but its heart and soul were in the very kitchen where he worked with French-born Chef Roland Passot, owner of the area’s La Folie and Left Bank restaurants, as he prepared food for the annual Make-A-Wish Foundation Wine & Wishes fundraising event on Treasure Island.
Tien was finally standing beside a true French chef, a master of foie gras and frog legs, soufflés and escargot: the country’s finest cuisine. Knee-deep in Chef Passot’s white coat, its sleeves rolled up high, tall, white hat proudly atop Tien’s head, he was finally a chef, and finally, in his mind, in Paris.
The evening, a black-tie affair, brought in dozens of the area’s finest restaurants, which displayed hundreds of exquisite samplings, from uniquely prepared starters, to meats, salads, cheeses, and desserts, such as French macarons and puff pastries. Tien and his family strolled slowly from vendor to vendor as though roaming the streets of France, tasting the country’s most delicious food from sidewalk cafés selling crêpes or sandwiches to people on the go.
But helping Chef Passot add the final touches to plates during Wine & Wishes was just the beginning. Another two visits to Paris awaited.
9
The second of three visits came a few days later as Tien, once again, stood beside the chef, this time, the experience taking him to the heart of French cuisine, the place it all begins—a true French kitchen.
A sleek, black town car had swung by the Hotel Sofitel San Francisco Bay, where Tien and his family were staying for the night. They had checked into the hotel—the fanciest Tien had ever seen—and enjoyed macarons and a rich, flowing chocolate fondue that welcomed them to their room.
The town car, following dancing lights of red and blue from four police cars leading the way, took them to a place that would reveal how these and other of life’s most delicious foods were made—Chef Passot’s Left Bank restaurant. The closest Tien had ever come to a police escort was riding in the back of an ambulance on his way to the hospital; and the nicest restaurant he’d ever been to would not come close to the restaurant he was about to experience.
In the middle of Left Bank’s kitchen, Tien stood in awe as the hustle and bustle of a busy, French restaurant came to life before his eyes with the infectious chaos of knives chopping, pans clinking, flambés firing, shouts of dinner orders echoing. Tien watched as food in every form, from raw ingredients to pans sizzling to perfect plate placement, made its way from the loud kitchen to the dining area, where guests sipped on wine, enjoyed one another’s company, and pleased their taste buds with dishes that originated halfway around the world.
Standing over a hot griddle as food on plates carried by the careful hands of prep chefs and waiters flew by, Tien remained focused on the task he was given—flipping crêpes. Left Bank’s industrial kitchen had different demands than his kitchen at home, where he had spent every Sunday morning cooking crêpes with his father from the time he was six years old.
Tien had hung a sign on the kitchen door every weekend announcing “Crêpe Day Sunday” to the rest of the family, and he and Bruno spent hours making dough from scratch, flipping and filling them with jam or eggs and cheese. They laughed together as Tien learned to keep the crêpes from flipping onto the floor, and now, beside Roland Passot, the chef watched as Tien perfected the flip—quickly adjusting to the fifteen seconds it took to cook each side as opposed to the two minutes it took in his kitchen at home.
They flipped and stuffed crêpes together, fulfilling the orders of customers ordering any kind of crêpe imaginable from the special, one-night-only, “Tien Menu.” Not only was Tien a chef, but also he was a chef with his own menu. He smiled more than he had smiled in months as a long table filled with police and firefighters sat and indulged in his creations.
Touched by the spirit of this young, bright, and healthy child, the officers and firefighters passed around a hat to collect money for Tien—half of which he used to buy board games for himself, the other half he spent on buying games for the children in the pediatric ICU at UCSF. Three days a week, he was still one of those children, but on that night, he was a chef in Paris.
10
Tien’s tour through France continued two months later in a limo to the Culinary Institute of America in Napa Valley, where he witnessed a very different French restaurant culture from that of the pleasantly chaotic kitchen of Left Bank. The quiet, laid-back style of restaurant or bakery he imagined existing in Paris existed in the kitchen of the Culinary Institute, where Tien got to quietly learn from one of its students the art of making croissants and baguettes.
He helped make dough from scratch for the baguettes, which he rolled out and placed in a machine that molded and folded it into perfectly shaped bread. Fresh from the oven, Tien and his family gathered around a large, wooden table in the main dining area and enjoyed a feast that included Tien’s fresh-baked baguettes and other French-inspired foods, such as steaks they could slice like butter, mini quiches, delicious vegetable creations, and traditional desserts like crème brûlée.
Tien left the last trek of his trip to Paris with a bag of baguettes—the way he had always imagined people in France carrying the long, skinny bread from boulangeries to their homes or offices. Just like them, Tien was heading home. His trip to Paris was over, but through the three experiences that allowed Paris to come to him, the city would live inside of Tien forever.
Tien returned to the fourth grade, maintained good grades, and signed up for his school’s end-of-the-year play, where he auditioned and got the part of the grandfather in a play about the Oregon Trail.
On the night of the play, Dr. Portale gave his “okay” to let Tien leave dialysis a few minutes early as long as everything looked alright. Twenty minutes before Tien’s dialysis session was over, Dr. Portale looked at the numbers, checked his blood pressure, looked at the anticipation on Tien’s face, smiled, and set him free.
Lillian drove Tien back to Berkeley, straight to his school, where volunteers were able to quickly paint an old man’s beard across Tien’s excited face and send him onstage. It wasn’t the circus—he wasn’t tumbling or twirling or flipping or turning cartwheels—but he was back on stage; back in the spotlight, back where he belonged.
The audience, many of them the parents of Tien’s friends, cheered wildly at the end of the play, loudly in celebration of Tien’s return. He smiled and bowed with the rest of his classmates, then returned home to start his summer vacation.
Tien spent the next six months going to dialysis three days a week, living in between his old, “normal” world and his new world, a world he had learned to adjust to, to live in, because there was no other choice. He no longer had working kidneys, but he was alive.
One day after treatment, Lillian and Tien ventured into San Francisco as they did every other day of dialysis and enjoyed a little piece of France—crêpes in a small, quaint restaurant. Just like every other customer in the restaurant, Tien enjoyed every bite, but now he knew what went on beyond the swinging doors of the kitchen. It was another life back there, another culture, one that the Make-A-Wish Foundation had let him become a part of.
That day was a day like any other, but when Tien and Lillian returned home that night, Lillian opened the backdoor of their house and knew that everything was about to change.
Inches from where she stood were silent flutters in the cool, dark night; black wings of a bat danced wildly, momentarily, before scurrying clumsily back into the night. Staring at its tiny body, its beady, mysterious eyes, and snout face before watching it fly away, there was a moment of truth between them: a clear message delivered from the depths of folklore—bats were symbols of transition, of change, and initiation—out with the old, in with the new. As the wild animal’s dark body merged with the night, taking “the old” with it, Lillian knew in her gut what “the new” would be.
After nearly a year of keeping Tien on dialysis, carefully and occasionally broaching the subject of “transplant” with each other, Lillian and Bruno had finally made a decision. Despite its possible complications, they knew that keeping Tien on dialysis was not a “forever” solution. He could not live the rest of his life being kept alive by a machine, having his “normal” world constantly darkened by this other world of dialysis, a constant reminder that he was still ill.
He needed a transplant.
11
An hour after the bat fluttered into the night, the phone rang and Lillian knew exactly why. Tien had been on the transplant waiting list for less than a month, and as the bat predicted, the words, We have a kidney for Tien, were proof of the change the bat promised was on its way.
“Come now,” said a woman from UCSF.
Lillian closed her eyes, creased with lines of both happiness and sorrow: happiness for Tien and sorrow for the family that had just lost a loved one, making this transplant possible. She shared the news with her family—Tien was getting a new kidney.
The predicted three-hour surgery (“if everything goes well”) was a little less than three hours. It was late at night, and Bruno had returned home from the hospital to be with Yune and Vanina. As Lillian paced the halls, thinking, praying, hoping with all her might that the surgery would go well, keeping her mind free of the haunting “what if” thoughts that easily could have seeped in, she was finally able to breathe when doctors announced that the surgery was a success and Tien was heading to recovery.
“I’ll be here when you wake up,” Lillian had whispered to Tien when doctors announced, “It’s time,” before wheeling him back to the operating room. As a family, Lillian, Bruno, Yune, and Vanina had remained strong, patient through months of waiting on test results, kidney function, a transplant, and the fight of Tien’s spirit to pull him through.
Finally, as Tien crawled slowly from the grip of anesthesia in the recovery room, the wait was over. They, as a family, had won death’s battle, and after Tien’s successful surgery, they knew he would have a full life ahead of him, a life that did not require machines to keep him alive, a life he would be free to live to its fullest.
More than two and a half years after Tien’s transplant, he is enjoying middle school, learning to play the drums, and performing once again as part of his school’s drama club. Other than a few hospitalizations for different viruses and bacteria and the worry of his body’s rejection to its new kidney, Tien’s mind is consumed with childhood joy, such as playing with friends after school and coming up with new dreams, new places to imagine visiting, because Paris no longer lives within the limits of his imagination.
He has been there.
A place that only his mind once had the power to take him had come to him through the Make-A-Wish Foundation. It had led him through the double doors of a true French kitchen, let him stand side by side with a true French chef, and allowed him to taste hundreds of authentic French foods.
He hadn’t traveled the streets of Paris to arrive at such restaurants, hadn’t walked the sidewalks or seen the buildings or heard the accents. But that didn’t matter; he had experienced so much more. Rather than eat the food of French chefs in Paris, he had gotten to work with them. Rather than sit in fancy French restaurants, he had gotten to cook in them. Rather than breathe in the scent of crêpes and baguettes and croissants floating down the streets of Paris, he had gotten to make them.
He had visited Paris through his brother’s and sister’s stories, inherited his love for the city from his grandparents, developed an appreciation for its food from his father, and finally experienced its culture through a gift from the Make-A-Wish Foundation. And if the day never comes to cross the ocean and step onto the streets of Paris, the city, the experience of that city coming to life in his hometown, will forever be with him, will forever be enough.