Race Across the Sky (30 page)

June was nodding. “Mack said it would be toxic.”

“It's not a pharmaceutical drug,” Shane explained. “It's natural. It comes from the body. There's nothing artificial in here. It may not work, okay? It may not. But it's not toxic.”

He leaned in closer. “But something could still happen. Lily could have some kind of allergic response. We've never tested this exact drug on a baby. Her liver could react in some unforeseen way to the protein, and liver damage is not reversible. We estimate a one point eight percent chance of a problem.”

June had gone paler than he had ever seen her. She stared at the vial between his thumb and ring finger. “The doctor told me she only has a small chance of living past three years old,” she nodded, almost to herself.

“That is the current statistic,” Wenceslas agreed quietly. He passed her the vial, and she handled it nervously.

“How long does it take to work?”

“We don't know,” Shane told her. “A week, a year? It took around a day in our mouse.”

“Can I see the mouse?”

“Sure. You guys should have it, actually.”

“If something happens to the mouse, we'll know to call you.”

“His name is Thailand.”

“Tell me what happens if . . .” June trailed off, looked down at Lily and hugged her close. Her voice broke a bit. “If something goes wrong.”

“We'll get her right to the ER,” Wenceslas answered. “I'll bring the rest of the vials, and we'll tell them everything.”

“Can they just give the drug to her there, in the ER?”

Wenceslas shook his head and gave her a small, resigned smile. “We can't walk into a hospital with a vial of a homemade biotechnology drug developed in an unlicensed lab and ask them to help us inject it into a child. Should we stop?”

“And do what?” June gestured to her daughter. “She's dying. She's dying.”

Wenceslas nodded. “I think she is.”

“Caleb knew it. That's why he needed to bring her to you. He gave everything for this.”

Shane laid his open hand onto the table. “Caleb can't be the reason you do this.” He squinted, looking as deeply into her eyes as he could. “This can't be a memorial to him. It has to be because you believe it's right for Lily. You're her mom. It's your call. Not ours. Not his.”

Shane turned to Janelle. He knew she was struggling, wanting to tell them all not to do it. But by the set of her jaw, he saw that she would defer, as they all would, to June.

Shane went to the bathroom and returned with a paper bag. He placed a box of alcohol wipes and an Elmo Band-Aid onto the coffee table. Janelle and Wenceslas watched as he arranged them like sacrament. Outside a family ran laughing past their bay window.

Shane held out a packaged syringe to June. “Do you know how to use one of these?”

“I sure don't.”

Wenceslas explained, “Better learn now. If this works, you'll need to do this every six months. You clean the side of her belly with rubbing alcohol. Let it dry. Pinch her fat between your fingers, three inches from her belly button. Very easy. Push the needle in straight. And press. When you remove it, push the plunger and it will click shut. I'll write Shane a prescription for the syringes.”

June lifted Lily onto the table, facing her. She raised her yellow play shirt and touched her warm, thin stomach. June looked shaky. She's not going to make it, Shane saw.

“I love you, baby girl,” June whispered into her ear.

Lily seemed to sense something then and squirmed away. June opened the wipe. The antiseptic smell reminded Shane of imminent pain. And then she took up the syringe, pushed it into the top of the vial, and pulled the plunger up, sucking in the opaque liquid of Prajuk's genius.

Her hand hovered over her baby. Tears began to roll along her cheeks. Nobody moved.

Janelle whispered. “This is enough for now.”

And June pushed it through.

Lily frowned, and then tears burst from her betrayed eyes, and she howled. June withdrew the needle, laid it on the table beside the discarded wipe, and it was done.

Instantly a trembling began in Shane's fingers. It moved up his arms, as if he were suffering the physical reaction they all half-expected in Lily. He moved his hands to his lap so that no one would see. Wenceslas was looking at him. Then Janelle. He could not control it as it moved to his shoulders. Oh, Jesus, he screamed inside his head, what had he just done? He stood and walked into the kitchen.

Janelle followed him. “What?” she asked angrily.

He could not reply. He stared out the back window onto the alley. It took everything he had to remain upright.

“You can't,” she frowned, “be thinking this
now
.”

Shane shook his head back and forth.

“If you had any doubt, you should never have let her do it.”

“I don't,” he replied far too weakly.

Fed up, Janelle went back to the living room. He could hear them talking with voices reserved for waiting rooms. A hot flush burrowed its way into his temples. His chest tightened. He grabbed the countertop, squeezed, pulled deep breaths. It was not enough. A cool tingling shot down his left arm.

He waited to hear the screaming from the other room when the bruising of Lily's soft stomach appeared, and turned a wretched black. When her eyes began to yellow. When her body began to convulse.

Shane searched out some neutral object, the toaster, the window. Anything to focus on. It was no good; every nerve in his world tensed. Taking breaths became harder. He thought he might pass out.

The window of time Prajuk had set for a toxic reaction was twenty-four hours after injection. Shane could not fathom surviving this amount of time. Twenty-three and a half hours? How would he get through the next two seconds? The knowledge that Caleb had walked into his house and never come back, and that the same thing could happen to this baby and that it was too late to do anything at all about it enveloped and demolished him.

Sweating, he went upstairs and took Nicholas from his crib. The boy was asleep, and hot against him. Shane sat in the rocking chair and was looking at him, searching for Caleb in the bones of his face, when June came in.

“I'm wondering,” she said quietly, “if we could stay here for a while.”

Shane blinked.

“I mean, we could go back to Taos. Her dad's there, we know people there. Or maybe Arizona, maybe my parents can help me with her. But for now, just for a few weeks, I want her to be near Doctor Chin. And you guys.” She hesitated. “Is that okay?”

He shuddered and looked up at her. “Of course. How is she?”

“A little feverish. Fussy.”

“If it doesn't work, I'm sorry.”

“You don't need to be.”

“I'm sorry even if it does.” He started searching around the room, his voice breaking, and June took his hand. “If I hadn't done this, if I hadn't . . .”

“Look, Shane, if you hadn't done this, Caleb would have learned about some doctor in New York, or Miami, and he would have taken her to them. He would have run there too.”

She reached down and stroked Nicholas's fine black hair.

Softly she said, “Sometimes when I'm watching Lily play? I feel like I'm not really there. I see how alive she is apart from me, without me, and I can feel myself slipping away. I can see her moving forward on her own. Sometimes I wonder if I died some time ago, and I'm observing her. If I'm a ghost.” She looked up to Shane. “Is that kind of strange?”

“Maybe that's a little strange.”

“You don't feel that way with your son?”

“No. I feel connected to him every second.”

“Okay, well, keep it a secret.”

Shane became quiet. Because he had his own secret. It might be time to tell it.

Everyone believed that he had the idea to help Lily. That he had persuaded Prajuk, emptied his savings, rented the lab, and produced this drug due to some notion of his own.

But actually, none of it had been his idea.

When Shane had returned from Boulder, he knew, he had been overwhelmed by the impending birth of his son, the start of his new job, and he had not done very much for Lily at all. Forget charging off to rent any private labs; he had not so much as found a specialist. Left to himself, he would have told Caleb that there was nothing in test for this condition, sent him some printouts from the Web, and focused on his new family.

And he would not have heard from Caleb again.

But instead, Nicholas had arrived. Nicholas had come and opened his sticky newborn eyes, and he had understood fragility and holiness.

Nicholas had shown him what to do. And kept him on his course. Producing this drug had not been the finest act of Shane's life; it had been the first of Nicholas's.

He stood and smiled at June, and they went downstairs. Beneath his feet the old house creaked with a future history. Things would happen in this hall, in these rooms, which would define the rest of his life.

As soon as he walked back into the living room he felt something different in the air and froze. The energy had changed completely. Wenceslas and Janelle were staring at him, mouths open. He fought an urge to turn and run. He shot his eyes down to the floor.

Lily was sitting up, her head bent over one of Nicholas's foam blocks, clasping it between her hands. There was no sound save the passing of cars in the dusk.

There was no other sound in the room at all.

Somewhere over the Pacific a breeze shifted, waves hurried forth, and the smell of fresh water washed over the world.

A
lpha-one antitrypsin deficiency is a real genetic condition. The descriptions of its symptoms, treatment, and mechanisms in this novel are neither expert nor entirely accurate. I have needed to simplify the disease both for readers and out of my own very finite grasp of it. Any errors here are mine entirely.

The Alpha-1 Association is a wonderful group of people dedicated to helping the newly diagnosed, advocating for patients, and fundraising for research. Please go to their website to learn more: www.alpha1.org.

T
hank you, Rachel Vogel. You rock. As an agent, reader, and editor. You made this all happen, and made it all better. I'll never forget the moment I got your e-mail about this manuscript.

Thank you, Denise Roy, for being so collaborative, enthusiastic, and encouraging. And for being so patient with me. I appreciate everything you've done, including things I don't even know about. Thank you for taking a chance on my work. And for all you did to improve it.

Thanks to Kate Napolitano, Phil Budnick, John Fagan, Liz Keenan, Katie Hurley, Ashley Pattison McClay, and Catherine Hayden at Penguin, for all of your work on the publication of this book.

Thank you to the Backspace Conference, and everyone I met during that weekend. I will always remember the enthusiasm and momentum it gave me.

Thanks to the Metra Union Pacific Line for creating Quiet Cars.

Thank you to the doctors, nurses, and staff at Northwestern Memorial Hospital.

Thanks to all of my work partners and creative directors, who taught me to take critique and revise, skills that made this book possible.

Thank you, Brian Eno, Harold Budd, Explosions in the Sky, Bon Iver, Radiohead, Steve Reich, and Boards of Canada—this book was written to your work.

Thanks to Pete Figel, who first told me about the world of running cults, and to an assistant Brand Manager at Genentech, who first explained to me how biotechnology companies make decisions.

I am indebted to these books:
Building Biotechnology
by Yali Friedman,
From Alchemy to IPO
by Cynthia Robbins-Roth, and
Running Through the Wall
by Neal Jamison. Anyone interested in the subjects in this novel should check these out.

Thanks to all of the early readers, any of whom could have stopped this book in its tracks by informing me they hated it: Joel Jacobson, who suggested the changes that made the story work. Matt and Susan Skelly. Leah Fietsam. Catherine Driscoll, Julie Stevenson, Robin McAfee, Briana Danielson, and the rest of the Lake Forest and Boston book clubs who sacrificed a good erotic vampire book to read an unpublished manuscript.

To Madeleine and Alan Ferris, for their constant support.

To my dad, Ron, who would have loved this. My sister Samantha for her love. To Bronia, Jack, Sylvia, and Harry.

To Greg Ferris, the bravest, boldest man on earth. You know something about ultramarathons and medicine.

To my mom, Wendy, an incredible role model, who in- stilled a love of reading and writing into me. Thank you for encouraging me from the day I was born.

And to Kerri, my beautiful and talented wife. Thank you for giving me all of those hours to go work on this. And for giving me the greatest answer of my life. Which was, of course, yes.