Once Upon a Wish (41 page)

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.