Once Upon a Wish (42 page)

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.