Race Across the Sky (13 page)

When he looked up, June was sprinting toward him.

• • • • • • • • • • • • 

“W
e call them orphans,” Janelle explained as she took the exit to Target.

Shane had never encountered a woman who needed to drive as much as his wife. She could not bear a passenger seat. He had long since accepted this as his lot and sat semicontentedly watching the hills. August had brought storybook pink skies to the bay. Down a particularly steep hill the megastores appeared like coliseums.

“Orphans are conditions that are so rare, that producing drugs for them isn't feasible.”

“Feasible?”

“Profitable.”

“Ah,” Shane nodded.

“Well,” Janelle explained, switching lanes, “it takes as much money to launch a drug that helps ten million people as a drug that helps ten. Rounds of clinical trials all over the country, lawyers, dealing with the FDA. And if you get past the first round, you do it all over again, and then a second and a third time. It takes a decade, and half a billion dollars, to get a biotech drug approved. And, if you ever get as far as approval, there's Marketing, supply chain, educating doctors. And people wonder why the drugs are expensive.”

She paused, pulled the car aggressively into a tight spot, and looked at him. “Helixia expects ninety-five percent of our attempts to fail. It's built into our share price. So our successful products need to pay for themselves and all of this research. If they don't, our share price plummets, we have less money for new research, less drugs get discovered.”

Inside, they loaded up two carts full of diapers and wipes, and a makeup remover that Janelle favored. Nicholas hung snugly in his Baby Bjorn; Shane could smell the baby shampoo on his fine black hair.

In one aisle he spied a tired young mother speaking harshly to her fussy baby and tensed. Ever since Nicholas's birth, he felt a new responsibility toward infants. He hesitated there, unsure what he would say if she met his eyes. He caught up with Janelle in the paper towel section.

“Why not produce an orphan drug and charge whatever we have to not lose money? It might be crazy expensive, but we'd have it. And then in a few years, generics could come in cheaper.”

Janelle frowned. “That would be four or five hundred thousand dollars a dose. Who pays for that? Insurance companies were set up to pay for eighty-dollar antibiotics, not six-figure biomedicines.”

“There are families who would spend that in cash to cure their children.”

Janelle patted his back as they walked slowly toward checkout. “So medicine for the super-rich only? There's a great idea.”

“Well, ‘only super-rich children live' is better to me than ‘no children live.'”

“We're just at a place where producing biomedicines for a market this small isn't sustainable. And generics would lose money, so they wouldn't enter this market either. In fifty years things may be better. I know you want to help this baby, but Helixia isn't going to be the way. We need nipple pads.”

While he unpacked their carts at the register, Janelle looked pensive. “Although. Have you heard of the Orphan Drug Act?”

“I haven't.”

“In the early nineties this same problem you're hitting came to the attention of the government. They came up with a classic government solution. They created the Orphan Drug Act.”

“What is that?”

“It allows companies to apply for grants to develop drugs for small populations. It gives them tax incentives and market exclusivity, which is a big deal. Now, this was in the days of a more progressive government.”

“So could Helixia apply for a government grant to develop a drug for alpha-one antitrypsin deficiency?”

“We could. But we wouldn't.”

Nicholas went full-on fussy as he loaded the trunk. Janelle whipped a pacifier from her pocket, and the boy was mollified.

“Why not?”

“Too much risk. The financial incentives are only worth anything if the drug is successful. Which, like I said, ninety-five percent of them aren't.”

Janelle looked at him carefully. “Baby, you've only been here a month. Even if you'd been at Helixia for twenty years, you'd need a solid case that an orphan drug would pass trials before you could suggest it.”

Confidently, slamming the trunk, he said, “I think I have one.”

•   •   •   •   •   •   •

As Janelle's last two weeks of maternity leave approached, Shane could feel a new stress working its way through her.

Hua had offered to take care of Nicholas, freeing them from a crazed nanny search. But Janelle seemed torn about going back to work. When Shane commented how lucky Nicholas was to be in the care of his grandmother, Janelle had turned unexpectedly harsh.

“My mother comes from a different country, a different way. I don't want her raising Nicholas.”

“We're raising Nicholas, honey.”

“A third of the time,” Janelle had shot back suddenly.

That night, Shane awoke with a start; Nicholas was screaming. He shuffled down the short wood-floored hall in the darkness, and there was his new son, red-faced in his crib. Shane lifted his warm body and sat with him in a small blue rocking chair by the window. Stroking his fine black hair, Shane felt his tiny body shudder and relax against his chest. Where had he obtained the power to soothe just by touch? This must be what Mack taps into, he thought. The trick is, both the person being touched, and the person touching, have to have complete, doubtless faith in the procedure. Perhaps this was why Mack wasn't able to help Lily; she was too young to believe in him. A baby, he understood, only believes in her parents.

He thought sadly of June. What kind of anguish must she feel, listening to Lily's wheezing and coughing, unable to make it go away? A parent without power might be the saddest thing in this world.

He imagined being incapable of helping Nicholas, the pain and rage of it. He felt certain that he would do anything he had to, go anywhere, fight anyone, to save him. Nicholas and Lily began to blend into one. After all, he wondered, how were they different? Genes, spiraling strands of magic. Other than that, not at all. He was responsible for Nicholas's future, and so, he understood, for Lily's as well.

He prayed that the tiny red-blonde baby was sleeping well right now, and he held his son close. He wanted Nicholas to soak this power, this energy, this security into his skin, so that it infused him on some cellular level. And then, humming a berceuse, Shane laid him back in his crib, and Nicholas sank into whatever dreams await a six-week-old boy.

•   •   •   •   •   •   •

The following morning, Shane walked by Stacey's cubicle, cradling a paper cup of coffee. “Hey,” he asked, “got a second?”

Stacey adjusted her red glasses. “What's up?”

“The Director of Immunology is Dineesh . . . ?”

“Dineesh Pawar.”

“I sent him an e-mail request for a meeting, but I never heard back. Can you help me get in with him?” Shane smiled plaintively.

She cocked her Sicilian head. “Dennis mentioned you in a senior management meeting. Good feedback coming in.”

“Thanks.”

“I'll see his assistant tonight. I'll get you a slot, no worries.”

The following day, Shane received notice that a meeting had been arranged in Dineesh's office. He found the Director of Immunology to be a surprisingly handsome man. Six feet tall, with a head full of slicked-back black hair, and perfect white teeth. He could have been, Shane felt, a Bollywood star. He wore a white shirt tucked into pleated black pants. A gold chain was visible inside his collar.

“Alpha-one antitrypsin deficiency,” Dineesh considered, standing near his desk. His voice was quite deep. “Mutation of a gene on chromosome fourteen.”

“I know a little girl who was born with it.”

Dineesh nodded. “Pretty rare stuff. You'd have to address the mutated gene, wouldn't you?” Dineesh shook his head, looking at his BlackBerry. “A thousand fucking e-mails around here, you know?”

“If we had the beginning of a treatment, would we ever apply for an orphan grant?”

Dineesh's dark eyes snapped up, an amused expression on his face. “For infant-onset alpha-one antitrypsin deficiency? Very rare. Too rare for us, man.”

As he walked around his desk looking at his phone, it was clear he had already moved on.

But Shane had not.

•   •   •   •   •   •   •

Caleb widened his eyes and made a funny face down to Lily.

She was surprisingly smiley for a baby who had slept so little. Something in the humid late August air was ratcheting up the tenor of her wheezing, and June had taken her into her bed at night out of fear.

Despite this interrupted sleep, she was growing, developing, in ways that astonished them all. Watching Lily became house sport; they applauded her, cheered for her, passed her from person to person, and she seemed to thrive with their attention. She would glance up at Alice, Rae, John, Juan, tighten her jaw, and a look of determination would sweep across her face, and she would pull herself panting across the wide wood floor.

“It's her personality,” John told them, running a hand through his crew-cut white hair. “That's a determined girl.”

Caleb never saw her unattended to. He supposed this was as good a way to be a child as any.

As September swept over the mountains, Caleb's teeth began aching. He was nearly forty-four and had not seen a dentist in eight years; he expected some decline in his dental health. But recently he had needed to keep his mouth closed against even the slightest breeze. Brushing his front teeth had become outrageous.

Caleb knocked on Mack's closed door.

“Yo,” came a shout.

Caleb found him shirtless at a small and cluttered desk, facing a window that looked onto the pines across the road. Countless running magazines littered the floor. A bare futon with two crumpled blue sheets lay by the window. Tacked to the wall were maps of Yosemite National Park, in various sizes and details. On the far wall hung a white marker board with training, work, and chore schedules for each of them. Mack was online. Internet access was prohibited to all members, but he had possession of a battered Dell.

“Dude. Barry just sent me the course. It's wicked. It is the fucking devil.”

Caleb took a tentative step closer and peered at the screen. “This is Yosemite?”

“I know spring feels like forever away, but it's only seven months.” Mack looked at him with his dancing bright blue eyes. “You ever been there? Yosemite Park?”

“I never have.”

“I went in college. Tripped and camped for days. It's so beautiful. Half Dome is from another universe. Whoever climbs it and wins this is going to feel like God.” Mack clicked his mouse and the computer went dark. Then he swiveled on his chair and looked at him. In a very different voice he asked, “What's up?”

“My teeth hurt.”

“Front or back?”

“Front.”

“Enamel.” He flicked his own teeth with a fingernail. “When you mouth-breathe during runs, the air dries out your enamel. All that friction thins it right down to the nerves. Surprised it hasn't happened to you before, dude.”

Caleb felt a question emerging. Later he would wonder if it was a challenge. “Why don't you do some reiki?”

“As long as you're running mouth open? It's going to get worse. Better to do some visualizations on running with your mouth closed. After a month or two the enamel will recover.”

Caleb swallowed. “I want to take Lily to a doctor.”

Mack looked at him. “You do. Where?”

“I want to get her to New York or someplace.”

“New York,” Mack repeated.

“Maybe there's an expert. Maybe there's a new drug.”

“You remember what happened to Hope?”

Caleb swallowed.

“She'd been with us three years when she got that tumor in her titty. I was healing it, it was disappearing, but she kept on doubting me, kept on asking everyone if she should see a doctor. Doubt is as much of a cancer as a tumor. You remember what happened?”

Caleb nodded. Mack had driven Hope to Boulder Community Hospital and never went back for her.

“When I healed Kevin's diabetes, there were no experts or drugs. But it took half a year. Lily's problems are within her own body. It starts there. It stops there. These are serious problems and I need more than three months to rebalance her energy. Natural healing takes time. But, brother, I'm the reason Lily's still breathing.”

“We know that.”

Mack stared at him. “Look at you. Your focus is just fucking gone dude. You fell off Engineer. You're all”—Mack waved his hands in the air—“scattered. Now you want to take them to New York? Maybe you just want to go back there, and they're your excuse.”

“No,” Caleb stated nervously.

“Maybe that's what you need. To go back to your old life.”

“I need to be here.”

Mack leaned forward, his face inches from Caleb's. “Then detach yourself
right fucking now
.”

Caleb took a step backward.

Something wicked flashed in Mack's eyes. “Let me tell you something about history.”

Caleb nodded unsurely.

“History is the study of small differences. When explorers discover a new tribe, on some remote island, you know what they find out? That the people with big ears hate the people with little ears. Fucking hate them. The big-eared people teach their children that the little-eared people eat their own babies. They go to war. There's generational violence over
ears
. Follow?”

“Sure.”

“Ninety percent of all worldly strife is caused by small differences. And when you and June get this involved, you create a small difference with everyone else in the house.”