Now You See the Sky

by Catharine H. Murray

  Chan nodded again. I was grateful that the doctor addressed Chan as he would an adult. That is one of the things I appreciated about raising my sons in Thailand. People expected children to be able to handle life and the pain and suffering that goes with it. They didn’t expect them to do it without ever crying and complaining, but there was no sugar-coating of the fact that life includes hardship.

  “You can cry and scream all you want to when we’re finished, but not during the procedure. Okay?” the doctor reiterated.

  “Okay,” Chan answered.

  It was normal practice in Thailand to avoid general anesthesia whenever possible, even with children. I believed that anesthesia hid the pain, rather than stopped it. I was aware that anesthesia is normally administered along with what is known in the trade as “milk of amnesia,” a drug that induces a state of forgetfulness about the experience, so that the patient cannot consciously remember it. To me that meant it also made total healing from the experience impossible. Without the ability to access the memory of the pain, how could one later release it?

  A little later, the doctor came back to the room to take us across the hall to an examining room with bare floors, cement walls, and a steel examining table bolted to the floor. I lifted Chan up onto the high table. The doctor asked him to pull his pants down over his bottom and lie on his belly. He did so.

  Dtaw and I stood close by, smiling our reassurance and faith in Chan. Inside I trembled. The doctor spoke casually to Chan as he unwrapped the needle he held below the table, out of Chan’s sight. When he told Chan to look at us and keep very still, raising the needle over Chan’s hip, I could see why. The needle itself was six inches long and an eighth of an inch in diameter. I summoned all my mothering skills to keep the alarm from showing in my face. Focusing intently on the insertion spot in Chan’s hip, the doctor slipped the point into the soft flesh. Chan grimaced, but held still. Dtaw and I held our breath, watching the doctor draw back the plunger and the syringe slowly fill with a golden bubbling liquid. Chan didn’t move. At last the marrow had filled the tube and the doctor pulled out the needle and stepped back. We all exhaled. Chan pulled up his pants and stood up to come into my arms, his mouth set in a thin line.

  Once we were back in our room, and the nurses had left us, Chan started to cry. I told him I understood it must have hurt tremendously and he had been so brave. It was good to cry now, I kept telling him, as he let the painful experience shudder out of him in my embrace.

  Later that night, while we looked down at the city lights, a curiosity for all of us, accustomed to the darkness of our garden at night, Chan spoke up: “I think there must be a lot of good toy stores out there, Paw. I think tomorrow you should go get me a really cool new toy like you promised.”

  “Of course I will,” his daddy replied. As we lay side by side, the three of us in the single bed with iron rails, Dtaw talked about how brave Chan had been and said that when we woke up in the morning, he’d go right out to get him that special toy he’d promised. I worried that Chan could see our fears spelled out in our eagerness to buy him a reward for doing something hard. He would know that wasn’t like us. But I couldn’t think what else to do.

  We lay together cuddling Chan between us while Dtaw spoke to him in the soothing voice that always helped the children and me sleep. Finally, Chan’s breathing slowed and steadied, and the two of us dozed in the dark. At around nine o’clock that night, a knock sounded on the door. A nurse stepped in. “The doctor would like to talk to you.”

  Dtaw and I exchanged looks. The doctor who took Chan’s marrow that morning had told us that another doctor would look at the cells under a microscope and give us the diagnosis later that day. We knew we were about to hear what might be wrong with Chan’s blood. Aplastic anemia, leukemia, thalassemia. These words tumbled in my head like poetry.

  We followed the nurse into the unlit hallway that served as a long balcony so that we could feel the night breeze on our skin and hear the hum of crickets in the grass below. Immediately outside the door, a doctor stood with a knot of a dozen young medical students in white coats. The doctor looked at us, yellow light spilling from the room and illuminating the side of his face. He spoke to us without acknowledging the students gathered in close, listening.

  “I have examined your son’s marrow,” he began, “and it is clear to me that he has acute myeloid leukemia, bone marrow cancer. I think it is of the M6 variety, but that is difficult to diagnose only with the naked eye and a microscope. You will need to travel immediately to Seattle, Washington, for cytogenetic testing and diagnosis. They have more advanced technology there.” As he spoke, my legs felt weak and I looked around at the curious students. I wondered why they were there. I wondered why no one was asking me if I needed to sit down. I wanted to ask someone to bring me a chair, but as so often happened when I lived in that culture that was not my own, I suppressed my own needs in order to follow what seemed appropriate. I concentrated on staying vertical as I tried to make sense of the doctor’s words. A product of my racist culture, I thought, Oh no. I never should have married a Thai man. This must be the result of trying to mix incompatible genes. Already I had begun the incessant worry that this was somehow my fault.

  The doctor seemed to read my mind. “This is entirely a fluke. It has nothing to do with your genes as parents. There is less than a one-in–one hundred million chance that this kind of genetic abnormality would express itself. Medicine does not know why it happened. There is no explanation. Do not try to find one. Do not try to look for a cause. You will not find an answer.”

  As he spoke, I closed my eyes and saw black-and-white images of genes and mitochondria that swam up from seventh grade studies of biology. I saw the cell diagrams I had so painstakingly drawn, but in my mind they swirled like mutated fingerprints. I took deep breaths.

  “You will need to travel immediately to the Hutchinson Center in Seattle where the first bone marrow transplant was conducted to begin treatment with aggressive chemotherapy.” I couldn’t believe this was real.

  The doctor and students moved on. Dtaw and I were left to sit limp on the edge of the bed where Chan slept. Dazed, slammed, we sat in silence. We lay down and held each other close.

  “It’s going to be okay,” Dtaw murmured into the top of my head. “We will figure this out. Chan is very strong. We will fight.”

  “But how?”

  We stayed up talking about the options, Western allopathic vs. Eastern holistic medicine. He had heard of a nutritionist in Bangkok who specialized in helping people overcome cancer without allopathic treatment and chemotherapy. We had heard many stories of people healing from diseases using the powers of jungle plants, spirit doctors, and meditation. We went back and forth over the possibilities.

  “Honey,” I said at last, “this is cancer. As much as I believe in homeopathy for taking care of colds and fevers the boys have gotten, and as much as I am averse to allopathic medicine and want to believe in traditional Thai treatments, I don’t think we can decide what to do based on what makes me comfortable. We need to do what will make Chan well, whether it matches up to my antiestablishment politics or not.”

  Dtaw was quiet, then nodded, and we agreed that we would listen to the doctors and return to Seattle.

  As Dtaw drove us home that night, I held Chan close in my lap and looked out at the fiery orange and solemn gray skies shining in the flooded rice fields and wept silently. I was so afraid we would whisk him off to the US for treatment and he would die there, afraid he would never be able to come back to his beautiful homeland.

  * * *

  A week later Chan and I were headed to his first appointment at Seattle Children’s Hospital. Dtaw and Cody stayed behind with Tahn to pack up and move our family back across the Pacific two weeks later.

  PART 3

  Treatment

  Within seventy-two hours of a second bone marrow aspirate and confirmation of the diagnosis the doctor in Thailand had made, Chan was checked into a su
nny room on the cancer ward at Seattle Children’s Hospital. With a huge picture window on one side of the room and a glass wall between his bed and the center of the ward on the other, there was plenty to see. We watched as nurses and patients and families walked by. It almost felt homey, the way people came and went like neighbors. Nurses bustled in and out, friendly, welcoming. Social workers were sent to guide me through the dizzying challenge of insurance forms and medical histories. They knew that the news of a child’s cancer diagnosis would make the processes of bureaucracy impossible without gentle persistent help. Systems were in place for this. All I had to do was what they told me.

  There had been another kind of worry for a few days before Chan’s aspirate. The oncologist met with us to tell us that it was not clear that Washington State Medicaid would cover Chan’s hospital bills because we had been living overseas. She told us that Chan’s medical costs could amount to well over half a million dollars. Despite the enormity of this number and having no savings at the time, we didn’t think much about it. A lifetime of debt sounded at that point like the least of our worries. It was still a relief, though, when she told us the next day that even if the state wouldn’t cover the bills, the hospital would find the funds to make sure Chan received the care he needed. After Chan was admitted, we were informed that Medicaid would pay for his care after all.

  Before the chemo started, Chan would need a Hickman line surgically inserted just above his heart. This was done so the toxic chemo drugs could be conducted into his body without exhausting his forearm veins. One of the nurses explained that only one adult would be able to stay in the room at night. The rest of the family could come during daytime visiting hours. The five of us had always slept close together. We contested the policy, but we did not win.

  * * *

  A few days after the first doses of chemo had been pushed into the line, one of our nurses took me aside to give me some advice: “When his hair starts falling out, it’s going to be itchy and messy. And it won’t look good. You might want to consider shaving his head before that happens. We have clippers. I’d be happy to do it for him.”

  Grateful for her wisdom, I consulted Dtaw. Because he was always skilled at getting the children to do what he wanted them to, I left it to him to bring it up with Chan.

  “Mama!” Chan, excited and happy, called to me as soon as I’d opened the door to step into the room the next morning. “Guess what? I am going to have my head shaved.”

  As soon as the last clump of soft brown hair fell to the floor, Chan grabbed up his bedsheet and wrapped it around his waist and over one shoulder, monk style. “Look, Mama! I’m a monk!” He picked up the clean plastic basin by his bed for the nausea that would hit hard in the night and held it like an alms bowl as he pretended to make the morning rounds.

  * * *

  I pulled the movie The Black Stallion off the shelf from the line of videos in their worn cardboard cases. I remembered liking the movie when I was young, so I took it back to the room and offered it to Chan. During his stays in the hospital, the threat of infection was taken seriously because of his suppressed immune system. He was never allowed to leave the floor and was discouraged from leaving his room. Other children were not allowed to visit, and even his brothers’ visiting hours were limited. After raising my boys without television or Internet in our home, and after realizing how much physical pain would be involved in chemo medications, I quickly succumbed to our rapturous forays into the world of television. Dora the Explorer, Johnny Bravo, and Kim Possible became companions I could depend on being cheerful and strong.

  I also allowed a movie every couple of days. I had been a mother who eschewed antibiotics and food grown with pesticides. In Thailand we had so much fresh air and sunshine that even indoors we were outdoors. Our traditional house had no glass in the many windows and the breezes and the neighbors moved freely in and out. We had shaped our lives not around career and financial planning but around a healthy lifestyle.

  Yet here we were, in urban America to treat our middle son for bone marrow cancer. With the onset of his disease, I quickly began to relinquish the tight grip I had held on my ideas of how to grow healthy children. Television became one of the earliest concessions, right after Western medicine.

  Chan watched the movie rapt. In it, an aged Mickey Rooney helps a bereaved boy and his horse to overcome their life-threatening obstacles and achieve greatness together. Chan told everyone about it. “Have you seen The Black Scallion?” he would ask his favorite nurses. I never corrected his mispronunciation. He would go on to tell with wide-eyed enthusiasm the struggle of the young boy and the way the horse saved him.

  Days later, and for the months of treatment that followed, when the diarrhea and vomiting and itching became so bad that Chan wept, Dtaw soothed him by telling him that when we returned home to Thailand, he would buy him his own black stallion.

  Trade

  For the next six months, we lived in an apartment in the University of Washington’s graduate student housing a mile and a half from the hospital. We were lucky to find this apartment, a modern place just right for us. Clean and new, furnished simply, it was part of a spacious complex of student housing with other young international families nearby. One of the three playgrounds built into the sloping lawns was twenty feet from our back door. With three boys under six, this was a godsend.

  Work was out of the question. Both Dtaw and I were overtaxed for time and energy with all the responsibilities of caring for the boys and Chan. My generous mother paid the rent on the apartment and whatever else we needed. We didn’t need much. Insurance would cover all Chan’s medical bills, and as we had lived in Seattle before, we had a whole community of friends and acquaintances and even people we’d never met who organized themselves into a support system for us. They divided up the chores of grocery shopping, cooking dinners, and shuttling Cody to and from the small school where he was in first grade. They even took care of Tahn so that Dtaw and I could focus on getting Chan everything he needed. They did all of this without troubling us for input. I only knew that when we came home at night from the hospital, groceries were in the fridge and dinner was waiting in containers on the counter. A friend even gave us her old minivan so we could get back and forth to the hospital each day.

  Seattle Children’s Hospital became our second home. We juggled cooking for Chan, soothing his chemo reactions, parenting the other two, and holding as tightly as we could to our sanity. For me, this required suppressing all my fears to be able to keep up with the constant physical demands of caring for a very sick child. Chan underwent two four-week rounds of inpatient intensive chemotherapy. He emerged seeming very much intact despite the painful side effects throughout.

  * * *

  Four months after treatment had begun, it looked as if Chan was on the road to recovery. The percentage of young cells in his body seemed to be returning to normal and his energy was high. He was finally home with us, making us all grin with delight as we watched him run and play with his brothers.

  We could have stopped there, walked away from the table without looking for higher returns. We could have hoped that the chemo alone would be enough to cure him, that his body would return itself to balance. We might have, but Chan’s doctors told us that cytogenetic testing showed that his DNA still carried a tiny abnormality on one of the chromosomes. Because of this, they suggested he have a bone marrow transplant to replace his own marrow with that of a healthy donor. There were so few people who had ever been diagnosed with this particular kind of leukemia that no reliable statistics could be studied. They could not project the outcome of waiting to see how the effects of the chemo would pan out. They did say that if we wanted to go with a transplant, it should be done quickly, while the cancer was still at bay from the chemo. The only odds they could give us on this gamble were that the transplant itself had as much a chance of killing him as it did of saving him.

  Conditioning

  We followed the doctors’ advice and
took him in for what they called “conditioning,” toxic radiation that would kill his own cancer-producing marrow to replace it with marrow we hoped would produce healthy cells.

  In the basement of one of the University of Washington’s largest buildings, a bank of fluorescent lights glared down from the ceiling illuminating pale yellow walls and an expanse of white linoleum floor in this cavernous room that would soon swallow my child. I wondered how such a tall space could exist underground. It had taken some time for Chan and me to wind through the warren of hallways before we found the office where a nurse led us downstairs to the world of busy researchers, students, doctors, and a few frightened-looking patients.

  The radiation room waited, empty except for the steel table in the middle with the linear accelerator poised above it like a mechanical claw. This, they explained to me, was where my son would lie, unconscious, while his marrow—the marrow that had grown inside my body inside him—would be altered, damaged beyond repair. I stood looking at the setup and tried to understand this protocol.

  The room was cold. I knew he would be naked with his eyes taped shut so as not to fall open and disturb the technicians as they worked. The cast that had been molded to stop the radiation from entering his chest and ruining his lungs would rest upon his slender body. I knew they would do their work, adjusting angles, straightening his head, picking up and carefully settling his limbs on the chill of the table, perhaps warmed a bit by the insistent heat of his body, and I knew I would not be there to protect him.

  The doctor was adamant. No, he could not go through radiation and be conscious. I pleaded, explaining how mature he was, how good he was at holding still in uncomfortable places, but the doctor refused. And no, I could not stay in the room, not sit very quietly behind the technicians at the control desk, not bothering anyone.