At the park Gracie would quietly watch the other kids tumble through space, zigging, zagging, squealing through the play structures in wild, energized circles. She seemed to consider their play an enticing, alien task for which she was not fully equipped.
If she climbed to the top of a slide, it was with a devoted, intense focus. As the soul of caution, every step considered. Foot up. Stop. Breathe. Look around. Push up her sleeves. Wave to me. Wave to Kathy. Step. Stop. Breathe. Look around. In the time it took her to climb halfway up, an impatient mob would coagulate behind her, hoping to pass.
Eden would be up and down the slide five times before Gracie summited. Gracie was forever calling after her, “Eden. Wait. Wait, Eden. I am coming.”
Kathy never mentioned Gracie’s lethargy. If I did, she tried to be reassuring. “That might be her nature,” she’d say. “She’s a prudent kid. Like Brian!”
Gracie’s fevers, her general lack of zest, fueled my sense that we needed to act. One night as I took off Gracie’s shoes, I noticed they were tight.
“Oh no!” I cried out. Brian pounded up the stairs.
“What? What is it?”
“She’s outgrown this.” I held up the guilty red boot.
“And that’s bad because?”
“If she’s outgrowing her boots, she’s outgrowing her donation.”
“What donation?”
“Gabe’s donation! His cells. They said for transplant the more cells per kilo the better. And she’s gaining kilos. Look at these huge feet.”
“If we decide to transplant her, the cord blood we collected from Gabe is sufficient for many, many shoe sizes to come. You know that.”
Gracie, who had been ignoring this conversation in favor of looking through a picture book about baby ducks, turned her attention to her feet.
Brian looked at her. “You’re growing, sweetie.”
He looked at me. “That’s generally perceived to be a good thing.”
He picked up the red boot and placed it on his head, glanced anxiously around the room. “If I could only find Gracie’s missing shoe, I’d be a completely happy man.”
Gracie giggled and touched her forehead to the floor, then turned serious, helpful. “Daddy, look up.”
26
The new hematologist, who might or might not know Gracie’s name, was Dr. G. She had come highly recommended by virtually every doctor we’d encountered. In theory, she was amazing. In practice, meh.
On our first visit she’d kept us waiting for almost four hours. “If this is the first date,” Brian had said, “I shudder to think how she’ll treat us on the second.” But her hospital had the best facilities, the best blood. The washed and irradiated blood. We would wait.
On our second date, Dr. G told us that we needed to begin chelation. We’d known for a while about the need for chelating transfusion-dependent kids but had put off learning the details of the process in the hope Gracie would be cured before we had to deal with it. No such luck.
“Can you explain the process?” I asked.
Dr. G spoke to us while looking down at her pager. “Children who receive blood transfusions accumulate iron in their tissues. Red cells have an inner iron core. When the transfused cell disintegrates its iron is released into the bloodstream. Over time, this interferes with heart and liver function.”
“What will this require from Gracie?” Brian asked.
Dr. G looked at us briefly and then back at her pager. “The patient is hooked up to a pump which delivers a chelating medicine over a twelve-hour period each day.”
Until now, Dr. G had evidenced no sense of humor; the chance that this was a cruel joke seemed slim. Her foot bobbed, restless; she was ready to move on to the next room, next customer. Were those Jimmy Choos? A gauche display of conspicuous consumption made possible by the for-profit health-care system. Or maybe she came from money, and medicine was just a hobby. Maybe I would like to think about anything except what she had to say.
“Twelve hours?” Brian had said. “Isn’t that a long time to constrain a three-year-old?”
“Most parents do it at night.”
“How long will she need to do this?”
“For the rest of her life.”
Silence on our part.
“As long as she gets blood, you will need to pull the iron out. Otherwise, eventually, the lungs and heart degrade.”
My brain locked; I was post-verbal. The heart. The lungs. As though they were free agents, objects separate from the girl, with agendas, frailties, whims of their own. Parts that could rust, decay.
“When should we begin?” Brian asked.
“This week. I’ll write you a script for the chelating agent and the pump. A visiting nurse will come and help you learn how to operate it. You’ll see, it’ll soon be as routine as brushing your teeth.”
I wanted to scream, Do you spend twelve hours brushing your fucking teeth?! Killing the messenger was too good for Dr. G. I would torture her first, with the spikes on her Jimmy Choos.
From then on, every night, our primary mission was to successfully “hook her up” to the pump.
I was the designated mixer. The chelating medicine, Desferal, came in powder form, which had to be reconstituted into a fresh liquid solution with sterile water, dose by dose. The nurse who taught me the procedure emphasized the danger of overagitating the mixture and creating air bubbles, which could travel to the heart. I lived in fear of accidental effervescence.
The first night had been harrowing. Wait … swirl gently, swirl gently. I could hear the nurse’s voice. Wait … When it was fully dissolved, I drew the liquid into the syringe, locked the syringe into an evening clutch–sized pump, and primed the tubing until drips came out the end of the needle—careful not to leave any segments of air in the line. And then came the hard part. We had to get numbing cream on the girl, and the needle in the girl, without waking her. It was not a big needle, more of a thumbtack, but, like a thumbtack, it had to be pushed straight down. Pushing a thumbtack into your child is a counterintuitive act.
We put the cream on Gracie and waited for her to fall asleep.
When the needle pierced her skin, Gracie sat up precipitously and looked at us. “Be very careful,” she said, then toppled to the left, asleep again.
We crept out of the kids’ room and into ours.
I could hear Gabe’s quick whistling breaths in the next room against Gracie’s slower deep breaths. Hopefully, the pump’s medication was pulling iron out of her heart and lungs. Hopefully, they were not “degrading” right this second. It was hard to believe that chelating was a job for us, laypeople.