No, I could not even stand at the window outside, alone, peering in at my son. There was nothing they would let me do to keep him safe, to keep watch.
So when the time came, he and I both smiled bravely just before they settled the anesthesia mask over his face and ushered me out.
The waiting room was small and dark with a ceiling low enough that it seemed to press down on me. I sat in an easy chair with fabric so acrylic I shrank from its touch. A nurse had been assigned to sit with me, to keep me company. But I would have felt better alone, easier to sink into the fear and doubt that saturated my mind. What had I done? Listened to the doctors offering up my child’s body as a sacrifice to their gods of medical technology I had always had so little faith in? Even the doctors were not sure. The head oncologist’s words reverberated in my head. The transplant could kill him . . . Fifty-fifty chance that the bone marrow transplant itself will end his life. Why had we chosen this route? Up until that morning, we could have changed our minds, turned back, back to nature, to his own resilience. But not now. The radiation would kill him if the doctors didn’t swoop in and save him with their miracle of a stranger’s marrow.
I was there by myself. Dtaw had to take Cody to school and drop Tahn off with another generous friend who’d agreed to watch him. By the time Chan came out of the anesthesia hours later, though, we were all gathered around him, his brothers laughing at his sleepy face. They asked him what it was like. He roused himself quickly at the sound of his brothers’ voices and talked with his usual enthusiasm, delighted in the novelty of a new treatment center, nice nurses, and all the apple juice he wanted.
Except for the misery of chemotherapy’s physical effects, Chan enjoyed the adventure of the hospitals where he was the center of attention and there was always something new to see. Adults were keenly interested in his health and what he had to say. Doctors listened intently to not only his heart and lungs, but to his words. Even the frequent blood draws were interesting to him. He would watch the needle pierce his skin to find the vein while he chatted with the nurse and watched the dark blood fill all the test tubes she needed. He never showed any pain or fear during these procedures. The radiation was no different. Another adventure.
Dressed again in his own clothes, he looked none the worse for the experience. The deterioration would start from the inside. Invisible.
* * *
The night the marrow came, I was not there. It was Dtaw’s turn to be with Chan. Christmas. My mom had flown out from Maine and brought a small artificial tree and a pile of beautifully wrapped presents for Chan’s spacious room. The transplant rooms were the nicest in the hospital. A picture window provided a view of an enclosed green space beyond which treetops stretched into the distance. When I looked out, I could never orient myself geographically. I never knew where we were. I sometimes wondered what was beyond the trees in the distance, but I gave up quickly. It didn’t matter.
The nights I couldn’t sleep from worry, from feeling Chan’s feverish skin next to mine in the narrow bed with its hard chrome rails, I would lie down on the window seat, shutting my eyes against the blue-white monitor lights and red numbers always glowing beside him. I would sleep in small pieces between nurses coming in and out to check blood pressure and pulse through the night.
In the daytime, Chan loved to sit with me on the window seat and play with the collection of small stuffed animals he’d gathered, some provided by the hospital, some gifts from friends. Dividing them into two facing teams, he would line them up on the window seat. “Let’s play war, Mama.” I’d sit behind my team making funny voices for the different animals. My team was led by a bumbling general who yelled at his men to advance but always to their doom, as Chan’s floppy ponies and eagles and puppies pounced on mine, gaining unequivocal victory every time as I howled in defeat. He never tired of that game.
Dtaw and I alternated nights with him. I was there with him in the daytime and every other night. I sat with him listening, holding, soothing, while he suffered the itching, nausea, and pain. But the night they put the new marrow in his blood, I wasn’t there.
It arrived after midnight, flown in from far away. They had told us earlier that day it was on its way, so we had been anticipating its arrival like that of a faraway friend. Dtaw took pictures, catching Chan’s smile bright, everlasting. He poses beside the small IV bag of liquid, a bulging bag of gold, like honey, that the nurse holds in her hands. The marrow will enter the blue-capped side of the double-headed line that snakes into Chan’s heart. His smile shines, knowing, having been told, that this is what will save his life.
Wishes
I hurried down the narrow stairway of our two-bedroom apartment, flip phone pressed to my ear as I listened to the message from the Make-A-Wish volunteer. He had called so many times asking to meet that his voice had taken on an apologetic tone. I had ignored all his messages.
I was rushing to get Cody and Tahn packed into our minivan. Visiting hours would start shortly, and I hated to have Chan miss a minute with his brothers. Splitting up at the end of the day, alternating one parent at home, one at the hospital, was near the top of our list of what we didn’t like about living with leukemia.
“I was just calling again to see if we could find a time to come over to talk to you and your husband about Chan’s Make-A-Wish.” He pronounced Chan like everyone who didn’t know him did, with a long a sound instead of short, rhyming it with man instead of John. I listened almost all the way to the end of the message before closing the phone. With all I had to worry about, helping Chan recover from the recent transplant and trying to keep Cody, now seven, and Tahn, two, fed and happy, sitting down with a stranger to talk about something that didn’t have a direct impact on Chan’s survival was low on my priority list.
“Come on, guys, let’s go!” I called out to my boys, trying to sound cheerful and patient. Cody was already zipping his little brother into the lime-green padded coat I had gotten in one of the bags of hand-me-downs our friends brought when we first arrived. Tahn was trying to wriggle away, but Cody, after only a few months as the oldest brother in a family whose predictable routines had been interrupted by serious illness, had learned fast how to bring things in his world under control. He spoke firmly to Tahn as he pushed the red mittens over Tahn’s little fingers and marched him out to the minivan without any assistance from me. I was busy gathering up the daily doses of steamed broccoli and fresh vegetable juice to bring to Chan.
* * *
A few weeks later, after seven months of treatments and the bone marrow transplant, Chan was discharged from the hospital. The nurse showed me how to use the pill organizer that held the thirty-six pills he had to swallow each day. We found a daily routine that incorporated flushing his line, taking a walk, going to the playground, eating broccoli and whatever other foods Dtaw had, in his research, found to be antioxidants. We learned how to protect the hole in his chest with a large plastic sticker made especially for covering wounds for bathing, so we could give him quiet baths, careful, always careful to keep the bacteria-laden water from dripping close to any wrinkle in the sticker. When I found a free moment in the midst of all this, I returned the Make-A-Wish phone call and agreed to a time when the volunteer could come over.
* * *
We sat by the big window with its view of the twin apartment building across the wide lawn. Tahn wiggled on my lap, his bare bottom warm on my belly. Only recently weaned, he still took every opportunity to maintain skin-to-skin contact, and today this meant shoving his little feet up under my shirt and vigorously massaging my chest with his heels. I held his hands as he lay back against my thighs. His playfulness exhausted me. I felt my lower lip crack and bleed again as I smiled at the pleasure he took in his own mischief. I was so tired and distracted during those months of Chan’s treatment, so intent on taking care of him, that there was no time for me to remember to drink water. I grabbed a tissue to soak up the blood.
The volunteer looked away and watched the boys
playing in the area between us. The living room was only a small space by the front door with love seat and soft chair between the window and the kitchen. It was also our playroom. Cody and Chan, dressed as Ninja warriors, fought with plastic swords between us. His head still shiny and bald, swathed in black polyester scarves revealing only his eyes, Chan jumped and parried with his big brother as if he’d never been sick. Finally, I pulled him over to sit next to me to answer the volunteer’s questions.
“Mom, can you untie me? I’m sweaty.” Chan turned his back to me and I gently loosened and released the knots at the nape of his neck.
With Chan standing still, the volunteer saw his opportunity and asked, “What would be the one thing you’d want more than anything right now? If you could have one wish, what would it be?”
“A horse. A black scallion.”
“Okay.” The volunteer made a note on the legal pad he held on his lap.
“And if you couldn’t have that, what would you want?”
“My cousin Jew to come.”
The volunteer paused before asking again, “Okay, what else?”
“An Xbox.”
I was disappointed. Since we’d made the Make-A-Wish appointment, I’d been priming Chan. I knew it wasn’t right, but I couldn’t stop myself. I would casually mention ideas that appealed to me and my fantasies of escape. “Honey, what about a snowboarding vacation in Utah? Doesn’t that sound like fun?” When I got no enthusiasm for that, I tried others. “Don’t you want to go to Hawaii? You could surf.” After the last time he shook his head and replied with finality, “A black scallion,” I gave up trying.
* * *
The volunteer returned to our living room three weeks after his first visit with the verdict on Chan’s wishes. “We can’t get you a horse. We would have to find a place for it outside of Seattle, and with the costs and complications involved in stabling it and getting you to and from the place with your suppressed immune system, it’s just not practical long-term.”
Chan listened without visible concern and immediately responded, “What about Jew?”
The volunteer shifted in his seat and looked down at his legal pad before responding: “Well, international visas are not something we get involved with. So we won’t be able to do that either.”
Chan waited, knowing he didn’t need to remind the volunteer about his next wish.
“As far as the Xbox, your parents have forbidden that.” (Okay, so I didn’t give up all my rigid beliefs about wholesome parenting.) “But we were able to compromise on a plan. We are getting you a laptop you can use for nonviolent games and later for your education.”
Chan looked at me. I shrugged. I wanted to say, See, I told you you should have gone for the snowboarding vacation. He wasn’t surprised he didn’t get the Xbox. He knew his father and me well enough to know we would never let him have a large chunk of polar-bear killing plastic dedicated to games that required neither large motor movement nor human interaction.
“Thanks,” he told the volunteer, and went upstairs to play Legos with Cody.
The laptop arrived in the mail a week later. A flat black computer that, at the time, seemed state-of-the-art. It weighed close to ten pounds.
Dtaw and I kept it on the desk in our bedroom. The Make-A-Wish people had installed video games they thought we’d approve of. We did. The one we all loved involved virtually riding a BMX dirt bike over desert scenes. We would intentionally fly off cliffs and over huge jumps. The air time was exciting, and when you crashed, you never died. You could just keep playing.
News
When the nurse from the hospital called, nine months after we’d come to Seattle for treatment, I wasn’t expecting any remarkable news. Chan had been doing well. He was getting stronger every day; he roughhoused with his brothers and ran in the grass outside the apartment like a normal healthy boy. I was having conversations with the social worker about his eventual return to school.
“The routine aspirate showed blasts in the peripheral blood,” the nurse’s voice at the other end came, quiet but resigned.
“What are blasts?”
“Immature cells.” She sounded grim. I didn’t understand why. Then she said something about the elephant in the room.
“What elephant?”
“The cancer is back. The transplant failed.” Her voice indicated she was trying to soften the blow of delivering this news, but I could hear her own sense of failure.
“Oh.” I felt my heart sink as I lowered myself onto the chair behind my knees.
“Chan is in relapse.”
I was unable to register this as fact until the next day when we met with Chan’s transplant doctor. Dtaw and I sat in a dim conference room across the table from the doctors, social worker, and a few other members of Chan’s medical team. I felt sorry for the oncologist. He was so young to be facing such a hard situation, telling parents that their child was incurable. When the meeting began, he turned to us and, in a controlled voice and with face drawn in regret, explained the situation. He made it clear: Chan would not live. The hospital would continue to support him with morphine and transfusions as long as he needed them. Any alternatives would only prolong his pain and suffering.
The doctor outlined the options, never quite meeting our gaze. Or maybe mine wasn’t meeting his. “In these situations, the cancer is never successfully eradicated. You could choose to have Chan undergo another transplant, but most likely that will only extend and intensify his suffering.”
He went on to illustrate his point by telling us the details of a patient who lived for months longer in the hospital but with terrible, painful complications from the treatment. The doctor was so against further treatment that we agreed to let the disease follow its natural course, our only prospect being palliative care. I asked the doctor to define what this meant.
“When Chan’s suffering becomes unbearable, we will introduce morphine and increase the doses until death takes away his pain.”
I asked him how much longer Chan had to live.
“We don’t like to try to predict that. It varies from patient to patient.”
“Well, are we talking years or months?” I pressed.
He hesitated before replying, “He might have as much as two months.”
I don’t clearly recall my emotional state after this meeting. I don’t think I had one. I was simply numb. I do remember being accepting and obedient. “Chan will die,” I tried to tell Dtaw when we got home. I knew he would not accept the doctor’s prediction, so I spoke in my most please-be-reasonable-and-well-behaved voice.
But Dtaw is usually neither of those things. He insisted that we neither obey nor believe the doctors, but that we pack up our family and fly straight back to Thailand to fight for Chan’s life as hard as we possibly could where he knew of people who would believe in Chan’s ability to heal himself.
At first I thought this was unreasonable and unrealistic. I thought we needed to accept Chan’s fate, be rational, calm, dignified adults. But over the course of that night, as I listened to Dtaw’s conviction that Chan deserved our support in fighting for his life, that there were people in Thailand who could help, something old and seemingly intractable inside me began to shift. I began the slow turning toward hope that required a kind of strength I had never felt wakening before.
We left Seattle with our doctors’ blessings.
PART 4
Back to Bangkok
Cody scanned the baggage claim area while I stood dazed from heat and twenty hours trapped in flight with three busy boys and a sleeping husband. “Over there, Mama. Number three.” At eight years old and after nine months of living with his brother’s illness, Cody had become the family expert at logistics. Seeing his father and me too absorbed in caring for Chan to be able to think clearly about getting from point A to B, Cody was taking up the slack. Serious-and-efficient had settled onto his little-boy self like a second skin. Now, nearly midnight after a long journey and a whirlwind week of packing and s
aying goodbye to his Seattle world, he heaved his small body back in counterbalance to the weight of a sluggish metal cart from the line between the baggage carousels and, pushing into it, led the way. The two of us maneuvered the eight enormous duffle bags and four carry-ons onto three carts. Dtaw’s back was bad, so Cody and I always did the heavy lifting. But Dtaw could push a cart. Chan and Tahn sat perched atop one of the piles of luggage, and the customs man waved us through.
Hours later, drunk with jet lag, we were still awake at three a.m., sitting around Dtaw’s sister Jum’s kitchen table eating leftover noodles and slapping at hungry mosquitoes. Sticky and tired, it was hard to feel we’d made the right choice coming to such a hot, dirty city.
When it was finally dawn, we bathed in the cold water from the cistern, the children laughing and splashing with Jew as they always did. Mei Ya hurried us along so that we could get to the temple to see about getting Chan’s cure underway first thing. All nine of us crowded into Jum’s small sedan, and headed into Bangkok rush hour, traveling to the temple where the monk most influential in matters of health presided.
Chan had always loved temple visits. When he was a baby, and we rode our bicycles through the countryside, we often stopped at a temple to rest. The white thick-walled structures offered cool air inside and deep shade outside. Red-tiled rooftops swept toward the heavens, apexes tipped with long golden serpent heads that drew our eyes and thoughts upward. The grounds were always swept clean by the monks to ensure that they did not crush the life out of any bug too small to see as they walked. And flowers and trees rose succulent and abundant from the dry earth, offering serenity and color.
On those visits, before exploring the gardens, we first entered the main hall where we paid homage to the Buddha’s teachings and the monks who lived there. All of us on our knees, Cody and Jew even as toddlers knowing well what to do, we faced first the large golden statue of the Buddha that was the focal point of every temple, touching our foreheads and palms to the floor three times before doing the same as we turned to bow to whatever monk happened to be there. Then we would fall into quiet talk with the most senior monk present.
Now You See the Sky Page 8
