Ultimately, and not on the strength of my charm, we got our lamps and dining room chairs. Though it did not quell my larger anxieties, making the apartment functional gave me a delicious, illusory sense of control. Within twenty-four hours we had matching silverware, lemon-scented hand soap in every bathroom, sufficient paper towels and toilet paper to pass down through the generations, a utility room stocked with tinfoil, bug spray, laundry soap, and disinfecting wipes; we’d installed both Wi-Fi and a deluxe cable package, and stocked bottles of cabernet above a secret kitchen drawer that cooled multiple grades of dark chocolate. In our walk-in closet (another perk of southern living, I’d never before walked into a closet), my bras were folded (yes, they can be folded) into neat piles of ascending pink and ivory.
On Thanksgiving morning, Brian ran out to Whole Foods and returned with an entire meal. We heated, served, and ate it, laboring to feel thankful. Afterward I took the kids outside to fly a kite. There’d been an early snow, the lightest dusting over the open green space beside our unit. The kite lifted and dove, caught and lost wind. Against the snow, it formed a startling red diamond on white. Gracie ran to it, picked it up, and held it against her chest with care. “It’s OK. Flying is hard.”
32
We’d been to Duke once before for a consultation, but walking in as the parents of a girl who would, for certain, receive a transplant in this building, we saw it as if for the first time. The ceiling rose four stories above us. On each floor an open balcony curved into the high lobby space. The balcony railings were rimmed with see-through rounds of glass, so that children could look down on doctors below in white coats, cut down to size. Finally, smaller than the children themselves! Hanging fifty feet overhead were gigantic mobiles made of colored feathers. They twisted in the ventilation breeze. Someone, probably many someones, had spent vast amounts of time and money designing a space that would put children at ease, delight them.
I tried not to think of Temple Grandin’s humane redesign of slaughterhouse chutes with obfuscation. Don’t let them see what’s coming, how bad it is going to get. The cattle chutes, bending, dipping into water, bending again, but still, always, ending at the same silver blade.
Brian was making low-key jokes with the kids, pointing out the giant fish tank and fountain in the lobby. He took my hand and squeezed it in rapid pulses, an old code, I’m here, you’re here, I’m here.
We rode the glass elevator to the Green Level, floor four, home of the Pediatric Blood and Marrow Transplant Clinic.
In the waiting area I looked around with dismay. Until now, we’d been in the minor leagues. Not only did these kids look terrible, but most of them looked terrible in the same uniform way. They’d been transmogrified. They were, for the most part, bald, bloated, sallow, and slightly hairy-faced. They’d traded in their healthy bodies for oddly shaped sacks. The life force, the spark, had been siphoned out of them.
An older, slightly overweight girl said to her mother, casually, “Maybe I won’t have children.”
A toddler at the train table in mismatched Crocs, one blue, one green, stumbled and leapt up again, “I’m OK!” he said. A little loud, a little overeager. An assertion to the world, get this, take note, I am OK.
A playful redheaded girl holding a Barbie by the hair said to her doctor, “Bye, Dr. Googley-Eyes.” Her father, one hand on her shoulder, exchanged a look of despair with the doctor.
I felt an urgent wish to grab Gracie by the hand and run.
Look, I told myself, it’s just a hospital. Don’t be melodramatic. Take your cues from Brian, be calm. Take your cues from Gabe, get into the fish.
Across from us sat a boy some years older than Gracie. He was bald, with Groucho Marx eyebrows. His body looked overinflated and frail: a sack of vapors that might collapse under pressure. I might come to feel a certain affection for this look—the transplant bloat—but not today.
Gracie and the boy eyed each other, both a bit bored, investigating.
“Are you sick?” he said. She looked too good, out of place. He was questioning her credentials.
The mom looked up from her magazine. “Jake, that’s not polite.”
“I get blood,” Gracie told him. This was good enough. She and Jake moved toward the balcony railing so they could look down to the lobby. Gabriel snatched a pair of reading glasses off Brian’s head and trailed after them. That was his job description, trail after.
The mom gave me a look of apology, I mimed my understanding, and we started to chat. Jake had already had his transplant and since then had been stuck in an extended cycle of clinic visits for a litany of side effects. Here, we teetered, in silence. Should I ask more? Was that tantamount to making friends, our first Duke friends? We’d been cautioned against this: knowing, caring about, other families.
One transplant father I’d spoken to had said, “This will seem crazy, but don’t make friends. You don’t know which kids will make it and which ones won’t. If you get too close to the family of a kid who doesn’t pull through, it can send you off the rails. And you have to stay on the rails.” I didn’t tell him so, but I did think he sounded crazy. When I told Brian what he’d said, Brian didn’t think it sounded crazy at all. “I think he’s suggesting that it’s best to save your energy for your own kid. That makes sense.” Maybe, but what had always kept me steadiest in life was friends. On the other hand, what the hell could regular life teach you about transplant life? I’d never had to stand by while a friend’s child suffered. Or died.
I knew Brian would preserve the core of his caring for Gracie. And that was beautiful. And for better or for worse, perhaps even selfishly, I knew I’d make friends.
“How often do you come to clinic?” I asked the mom, Cindy.
“Four times a week at least, and we are here for almost the whole day every time.” I looked at her, hoping to appear more empathic than horrified. “We’ve been doing this for over two years,” she said. “With no end in sight.”
“Do you work?” I asked. “I mean besides this?”
“I was a nurse,” she said, “but not now. It would be impossible.”
I didn’t ask her if her family was hurting without her salary, or if she missed working, or if she’d go back, or, if she wanted to go back, would they have her. I tried not to ask myself these questions either, because I was pretty sure the answers would depress me. Work, and a creative life, were things I would think about later. When Gracie was well. When. I reached into my purse and offered her some gum, Juicy Fruit, soother of all ills.
I looked around the room. Were all these families equally imprisoned? Coming to clinic all day, every day, for years on end? Stuck in a purgatory of half healing?
Gabe called down to the fish in the lobby tank, “Fishes! Look me!”
“Gabe, they can’t hear you,” Gracie said, as if their inability to hear was the primary reason they weren’t answering.
Gracie and Jake stood at the railing, peering down at Lego-sized people moving across the lobby. They were pointing, laughing, talking. Gabriel was trying to squeeze between his sister and Jake, to see over the edge. He couldn’t get his eyes high enough, and so as a surrogate, he lifted up Brian’s reading glasses. He pushed them up, over the railing, and let go.
“Daddy’s glasses!” Gracie shouted out as they plummeted. Happily, fabulously, they did not peg anyone below. They landed beside the fish tank. Gracie said, “I can get them. Me and my friend.”
And so they walked together to the elevators, one healthy-looking three-year-old girl, one toddler, and their leader, a boy of eight or nine, who appeared to have toured hell. I watched from the railing as the troupe emerged below. The glasses were, unbelievably, intact. When the kids arrived back, I showed them to Brian. “Unscathed,” I said. “Good omen.”
Finally, we were called back by a nursing assistant who said, “Hi, Gracie, I’m Nadia.” She ignored Brian and me and offered Gracie her hand—patient as primary. Gracie must have sensed it was genuine; she took Nadia�
�s hand instantly.
“Do you know where to go, Gracie? I forget.” Gracie, good guesser, pointed left. Nadia beamed, and they headed that way. We tagged along behind. In the weigh-in room Nadia asked what Gracie would like to do first, temperature reading, blood pressure, or weight. Gracie took off her shoes but halfway to the scale lost momentum. She stood still and silent in the middle of the floor. Nadia said, “Gracie, you’re in the alligator patch! Jump on the log, girlfriend!” and pointed at the scale. Gracie jumped on and gave her patented high-pitched giggle. Take note, I told myself: Give the kid power, any way you can.
Nadia hooked up the blood pressure cuff and told Gracie, “This machine is gonna squeeze your arm. Your job is to squeeze my hand as hard as it squeezes you.” Gracie squeezed with her whole body. “Wow, Gracie,” Nadia said, “you are strong. “
Gracie beamed. “Nadia,” she said, “I think I know that.”
In the corner of the room was a bulletin board covered with pictures of kids who’d been through the program. One was signed, in hot pink Sharpie with three hearts, “I love you, Nadia, cause you are the nicest one.” The girl in the picture was rafting; the three hearts floated above the white river water. In another photo a girl jumped on a trampoline. Caught midair, her light brown hair flew around her head like an exploding star. There was a dark-eyed boy in a too-big fireman’s hat, grinning mischievously at the wheel of a ladder rig, as if he intended to drive anywhere but the fire. And an uber-thin teenage boy blowing out a cake full of candles, in a black T-shirt that read “Fuk Nü.” He looked so tired, as if he wanted to lay his head down on the cake and sleep.
One of these children, at least one, was gone. Pinned here, among the living.
“Gracie, are you going to put your picture up here too?” asked Nadia.
Gracie smiled at her, a full-wattage display. “Yes!”
No! I thought. Fuk Nu.
We were ushered into a private room to wait for Dr. Kurtzberg. To help quiet Gabe’s restlessness, Brian began blowing up latex gloves into animals Gabe requested: a camel, a donkey, a sheep. Gabe was on a biblical roll.
After an hour or so, Dr. Kurtzberg arrived wearing what we’d come to know as her uniform: denim overalls, rainbow socks, a utilitarian haircut, and an air of confidence cut with curiosity. I felt like someone who, after only a first date, had agreed to marriage. I desperately wanted to like this woman to whom we were entrusting our child.
The dance between the doctor and parents of pediatric patients is an excruciatingly awkward love triangle, in which the three sides don’t necessarily like one another initially (sometimes never), but all are devoted to supporting the one person between them.
Dr. Kurtzberg, using cord blood transplantation, was curing children who’d previously had no chance of a cure. She was a genius, undeniable genius. But her waiting room looked like hell’s waiting room. Her sheer confidence, once so attractive, now made me nervous.
She chatted with us for a few beats about our move to Durham, recommended good Thai food near the hospital, asked how the kids were adjusting. “Feel free to call me Dr. K or Joanne, whatever is most comfortable for you,” she said.
Then she looked over Gracie’s latest labs and frowned. Even in overalls and rainbow socks, she was formidable. A tiny dynamo.
“Her iron is very high,” she said. “The liver is compromised.” Again the liver, not her liver. We were quiet, waiting for her to continue. “You’ve done her a real disservice by waiting this long to bring her to transplant.”
Dr. K’s comment struck me as an insurance policy against her own accountability. If, God forbid, things didn’t go well, we were the ones responsible; we’d exhausted Gracie’s liver with our dithering. I was furious. Blood-throbbing-in-the-temples, throw-furniture furious. I opened my mouth to say—Go take a look at the wrecked children sitting out front, someone has done them a disservice.
Many other docs had told us to wait, or not to come at all. Had warned us about the risks, the toxicity of chemo, the damage to a young child’s developing nervous system. At least one had said that survival rates were better for older children. All of them had agreed that transplant was a long, nasty business not for the faint of heart. Which Gracie wasn’t. But still, any rational person would think long and hard before buying a ticket for this train.
Beside me, I could feel Brian’s anger too.
“This was the most important decision we’ve ever had to make,” Brian said. “It took time.”
Dr. K gave a curt nod. “I know you want what’s best for her. I’m sorry if I offended you.” She didn’t argue; she had more class than that. She paused there, choosing her words. “Kids with weak livers have a hard time. You should just know that.”
We knew. Kids with weak livers could develop VOD, or veno-occlusive disease, in which the liver fails. Full stop. Effective immediately.
Dr. K moved into problem-solving mode. “The best course of action at this point is to begin intense chelation. We can do it intravenously here in the clinic. Gracie will need to be here eight to ten hours a day, every day, from now to Christmas. After that, we will reevaluate her liver to see if she is ready. How does that sound?”
Um.
“Will intravenous chelation cause her any pain?” Brian asked.
“No, we will give her a port or a central line so that when she comes for chelation they literally just attach her line to the tubing. No need to stick her anymore. It would just mean an extra month or two here in Durham.”
We weren’t in any rush. There was nothing to get home to unless we were going home with her. We agreed, thanked Dr. K, and gathered our things.
As we stepped into the elevator, we passed a bald child in a wheelchair staring blankly ahead, emptied out. I couldn’t discern the child’s age or tell if it was a boy or a girl. Another wraith child.
I really, truly, deeply wanted to leave this place and not come back.
Gracie stood between Brian and me, holding each of our hands, subdued. The novelty of a new place had worn off. As the glass elevator descended, she looked through the wall as the cheerful colors, the bright feather mobiles, the enormous fish tank blurred past. She had an air of suspicion; she hadn’t had to endure anything too painful today, but clearly this was a place filled with doctors and nurses.
“Are we coming here again?” she asked.
“Yes, sweetie, we’ll be here tomorrow,” Brian answered.
“What about the day after that?”
“Yes.”
“And the day after that?”
“Yes”
“And the day after that?”
This was her favorite conversational move, keep the ball in play indefinitely. But she also needed to know. Should we tell her she’d be coming here every day for at least the next six weeks or for months, maybe for years? In the lobby we sat down on a couch with Gracie squeezed between us.
Brian said, “This place is where we are going to come for a lot of days. This place is where you will have a transplant so that you won’t have to get blood anymore.”
She thought about this for a while.
“Can I watch movies when I am getting my transplant?”
“Yes,” I said. “You can watch as many movies as you want.”
“Can I watch Dora?”
“Yes.” Brian was stroking her hair. “Dora galore.”
“I hate Dora,” she said. Trick question, good sign.
“Can I eat candy?”
“Do you like candy?”
“Yes.”
“Then you can eat candy.”
“What if it is bad candy that I hate?”
“Then you don’t have to eat it.”
“You won’t make me eat it?”
“No, sweetie, we won’t make you eat bad candy that you hate.”
“OK.”
We didn’t add that eventually, because of the effects of chemo, she’d be unable to eat. She wasn’t interested in knowing that now.
Bria
n went to get the car while the kids and I stood in the cooling night air. It seemed like heaven out here, open sky, a cherry tree in the middle of the circular drive, a friendly valet captain who greeted each guest with “Hello, milady” or “Hello, my sir.” There was neither irony nor servitude in his tone, just warmth and formality. Best of all, at this particular moment, there were no sick children in sight.
Gracie ran Gabriel’s stroller in circles. They were a gleeful pair of released finches, flinging themselves in every direction. When we tried to load them into the car, it was open rebellion. Gracie kept shouting, “Wait, I’m not ready! I have to do my exercises!” This was reasonable, but I wanted to get home.
“Let’s go, sweetie,” I said.
Rather than get into her car seat, Gracie swung her legs in between the two front seats, resting her elbows on them for support, car gymnastics.
“I’m flying,” she said.
“Great, lovey, now get buckled.” I was trying to sound casual. If she sensed a demand, she’d be obliged to resist.
“No way,” she said. “I’m doing my special tricks!”
I should be savoring her “special tricks” and everything else about her. But I wanted to get home, to get in bed, to maybe, if we were lucky, stay awake long enough to watch a crappy movie. “Gracie, in your car seat now. One … two…”
She ignored me and began to swing her legs so high she could kick the roof of the car. She looked at me from the corner of her eye. “These are exercises.”
“Gracie,” Brian said, “your exercises are so important. Let’s get home where you have more room for exercising.”
She wavered. “Will you exercise with me?”
“I will, my love. We’ll exercise together till the cows come home.”
She got into her seat and settled down.
“Stop showing off,” I said to Brian. It drove me nuts how he made things with the kids look easy. How he made things with the kids be easy. He’d arrived late on the scene, but he was way out in front.
“I was here first, you know,” I said.
“I know you were. And I’m not trying to make you look bad.”
Happiness--A Memoir Page 17