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.