Doctors (99 page)

Laura had found herself initiated into the world’s largest secret society—motherhood.

The days went by without her knowing how she had spent them. And yet her memories were visible and tangible: the playdough coloring on her hands, a flower Harry presented to her, slightly scrunched from being carried in his little fist.

Once when they were walking (Harry toddling) by a pond, they stopped to feed the ducks.

“Mommy, why ducks not wear shoes?”

Laura, unprepared for esoterica like this, could only say, “Actually, I’ve never noticed that. Perhaps your daddy knows. We’ll ask him when he comes home.”

And at dinner, when Barney asked, “What did you guys do today?” she usually said “Nothing special.” But what she really thought was, Everything was special, everything was
magic
, really.

In fact, something selfish in her kept repeating, Don’t grow up, Harry—stay like this forever.

Laura felt a painful wrench the first day that she left her child at his playschool (for three hours). In fact, she sobbed long after Harry was happily playing Simon Says with his new friends. (“He’s so young, Barn,” she had said plaintively the night before, “he’s just a
baby.
”)

She had never before realized how totally involved she was in loving him and therefore—even for so short a time—missing him.

Though they had pledged not to hover and examine, they could not help but notice that as his third birthday neared, Harry was ever-so-slightly lethargic. And although his girth was increasing, he was not gaining weight.

One night when Laura was washing him, she called Barney into the bathroom.

“Feel this,” she said solemnly, touching Harry’s belly.

He placed his hand where hers had been (“Ow, Daddy, that hurts!”) and knew exactly what was on her mind—enlargement of the liver and spleen—a condition that bears the daunting name of hepatosplenomegaly.

It was the nightmare they had lived through in their minds.

But
this
was not what they had feared. This had nothing whatsoever to do with brain development. This was something altogether different.

At six the next morning, after a night of tortured self-recrimination (“We should never have let him play out in the rain that day.” “It’s my fault, I put too many blankets on his bed.”), Barney called Adam Parry.

“Bring him in for tests so we can see what’s going on,” the pediatrician ordered.

In twenty-four hours Harry Livingston’s milieu changed from the sandbox to the hospital ward. There were definitely signs of pathologic process.

But what? The staff performed innumerable blood tests (“No more needles,
please
,” Harry yowled)—and repeated those that did not satisfy Laura.

“These are all to make you well, darling,” she said to try and mollify him.

“I don’t like this place. I want to go home.”

At which Barney, now a silent witness, found the strength to say, “We all want to go home.”

The doctors found that because of his enlarged spleen, Harry had anemia and thrombocytopenia—a low supply of platelets in the blood. He was at risk for rupture of the spleen.

And now an endless stream of specialists marched to and from Harry’s bedside. They were tall; they were short; they were fat; they were thin. Yet all had
one
thing in common: they left the ward shrugging their shoulders.

Laura and Dr. Parry wracked their brains for possible diagnoses. Were not the signs best explained by Gaucher’s disease?

To which Parry replied, “They are, but you could also make a case of metachromatic leukodystrophy—and it’s neither. Listen, Laura, you’re a colleague, so I can be frank with you. I don’t know what the hell he has. And I don’t know how the hell to treat it. All I know is that it’s progressing …”

Barney tried his best to keep up with his sickest patients,
but spent every spare minute either with Harry or in the Med School library, researching childhood diseases.

Warren called each day and asked if there was something,
anything
, he or Bunny could do.

“Yeah,” Barney answered. “And don’t take this the wrong way, War—but please just leave us alone.” And then he added, “And please don’t tell Mom.”

They both slept in the hospital, which is to say the hospital was where they didn’t sleep. For how could they? Every hour seemed to mark further deterioration in their child’s condition.

If they slept, Laura said grimly, they might miss a whole hour of Harry’s life.

They sat up, sheaves of paper between them, and tried to find some common link in the various reports of all the different specialists who had examined Harry.

“There’s got to be a clue,” Barney insisted, “some common denominator.”

Laura looked at him with desperate sadness in her eyes and said, “Face it, Barney. Even if we do find out, it’ll probably be too late.”

“No, Castellano, no,” he responded with quiet anger. “You try to get some sleep. I’m going to use the hospital computer and see what I can get from our linkup with the National Library of Medicine. At this hour of the morning there’s probably no one else waiting to use it.”

He left and she lay down into a semiconsciousness that neither dulled her pain nor gave her rest.

Her next recollection was of an unshaven Barney standing over her bed, a computer printout in his hand.

“I know what it is,” he said somberly.

“Are you sure?”

He nodded. “Three cheers for computer science. Now I know exactly what our son is gonna die of.”

She sat up, reached for her glasses, and took the paper from him.

“I’ll save you the trouble of reading it, Laura. It’s called RSS—the ‘Reeve-Strasburger Syndrome.’ ”

“I’ve never heard of it.”

“It was first discovered in the late eighteen-nineties by some guys in London. It’s a lipid storage disease that affects the myelin coating on all the nerves. I found an article in a Norwegian journal that explains its cause. Abnormal myelin is
produced because of the lack of a single enzyme—aryl sulfatase B.”

“You mean like multiple sclerosis?” she asked.

“No, that’s related but a little different. MS results in
de
-myelination. But the abnormal myelin in RSS not only coats nerves, it also accumulates in places like the liver and spleen.”

“Jesus, Barn, what you’re saying makes sense. I’ll call Parry at home.”

“It can wait, Laura,” Barney replied in a state beyond exhaustion, “there’s no need to hurry for this one.”

“Why? How is it treated? Did the machine give you any answers?”

He nodded. “Here, take your pick. Bone marrow transplant, liver transplant, antileukemic chemotherapy. A magnificent range of possibilities.”

He paused, and as he felt his throat tightening, said, “None of them works. In fact, there’s no record of anyone surviving past the age of four.”

At this moment he suddenly snatched the papers from her hand.

“What the hell was that for?”

“There’s no point in your reading about it. It’s the ultimate bitch disease. None of the senses are untouched. Christ, did we hit the jackpot.”

Laura crumpled, sobbing, into Barney’s arms.

Adam Parry arrived a little before seven, studied Barney’s notes, and, having more or less digested the various specialists’ reports, confirmed that Harry was indeed suffering from RSS.

“Although,” he confessed, “I don’t know where the hell this leaves us.”

Laura answered softly, “It leaves us with Harry for just a few more weeks.”

“No, goddammit!” Barney snapped. “We’re gonna find a way. We’re gonna shake the trees for every kind of doctor or faith healer—we’ll even go to Lourdes—I don’t give a damn what. As long as Harry’s breathing we’re gonna keep on fighting. I’m going to my own office and make a few calls. Laura, you phone the guy you used to work for in Children’s Hospital.”

Before she could nod, he was out the door.

Laura returned to their cubbyhole and began telephoning. First the Harvard expert.

“RSS?” asked the astonished voice.

“Yes, Professor,” Laura said softly.

“My God, I don’t think I’ve ever seen an actual case. Listen—would it be okay if I came down to New York—?”

“Of course.”

“And can I bring some of my residents? This is probably the only chance they’ll ever get to see the disease.”

Laura slammed down the phone. Then she called Dain Oliver at NIH. And asked him to check the records. Here she received not only consolation but some elucidation. After all, the NIH had data that hadn’t yet been published.

“Laura, there’s at least a theoretical way of approaching a possible cure.”

I want more than theory, Dain, she thought inwardly, but forced herself to listen.

“An abnormal myelin results from the absence of just one enzyme.”

“I know, I know,” she said impatiently, “aryl sulfatase B.”

“So the problem is clear. You have to get the missing enzyme back into his body. Now, as I see it, there are three possible ways.”

“What?” she asked, now breathless.

“First you might try a transplant of histocompatible skin fibroblasts. Of course, you’ll have to find a matched donor and that could take time.”

“Has it ever worked?” Laura asked.

“It’s never been tried,” Dain answered.

Okay, Laura thought to herself, let’s put
that
on hold. We may not have time to find a donor, much less perform the experiment.

“What are your other two ideas?”

“You might try the technique that’s used to treat kids with osteogenic sarcoma.”

“You mean, first the poison, then the antidote to kill the killer cells? It’s too risky. What’s the third alternative?”

“Well,” her former boss said with a sudden awkwardness in his voice, “there are people at the Institutes working on creating a laboratory model of the enzyme.”

“How close are they, Dain?” she asked urgently.

“It’s in the pipeline,” Dain replied apologetically. “We’re talking years, maybe two, maybe three. What can I say, Laura?”

“Dain, you have records of what’s happening in every lab everywhere. Has anyone made advances in this field?”

“Well, actually the West Coast has several groups trying to duplicate all kinds of enzymes—mostly private firms. In fact, there’s one person who seems to have the jump on everybody. But he’s very peculiar and I doubt if you could even get to talk to him.”

“Just tell me who he is, Dain, please,” Laura implored, thinking, If this guy’s got an answer, I’ll crawl on my hands and knees all the way to California.

“He’s with a very high-powered little firm called Neobiotics—a professionally discredited genius named Peter Wyman, who—”

“I know him,” Laura said, quickly cutting him off. “Give me his phone number and I’ll do the rest. What’s the name of that firm again?”

“Neobiotics. It’s in Palo Alto.”

“Thank you, Dain, I can’t tell you how much I appreciate this.”

He gave her the number. Then, with a helplessness that she could feel across the telephone wires, he said, “I wish there were more I could do, Laura. I’m so sorry for you.”

“Thanks,” she answered, barely audibly, and let the receiver slip from her hands onto its cradle.

An instant later she was dialing California.

But the receptionist said firmly, “I’m sorry, but Dr. Wyman’s rules are that he is never to be disturbed when he’s working in his lab.”

“Tell him that it’s Laura Castellano—and it’s literally a matter of life and death.”

Moments passed, and then a facetious voice.

“Well, well, how is Harvard Med School’s answer to Marilyn Monroe?”

Laura was not about to waste precious time on verbal niceties. “I’ve got to see you, Peter. I’ve got to see you as soon as possible.”

“That’s very flattering,” he said, laughing. “But I’m a married man. You should have declared your feelings sooner.”

“Please,” Laura beseeched, “we’ll take the next plane to San Francisco.”

“May I inquire who ‘we’ is?”

“My husband, Barney, myself, and our little boy. He’s very sick, Peter. We need to see you right away.”

“Why me? I’m a research scientist, Laura. I don’t practice medicine.”

“There’s a special reason.”

He sighed a weary sigh.

“All right,” he replied grudgingly. “I suppose the least disruptive time would be in the late evening. Most of the lab staff are gone by then—it’s when I do my most creative thinking. If you could drop by tomorrow evening after ten—”

“What about tonight?”

“Is it that urgent?”

“Yes, Peter. And if you’ll only say the word, we can still catch the noon flight.”

“Well, I must say,” he replied in peacock tones, “this is making me extremely curious. Anyway, it will be nice seeing you again, Laura.”

“Thanks, Peter. We’ll—”

“I can’t really say the same about that husband of yours, but if he comes with the package …”

“Goodbye, Peter, we’ve got to catch that plane.”

While Laura got the necessary apparatus to keep Harry stable during the journey, Barney called the airport. Three hours later they were airborne to San Francisco.

They had told only Adam Parry where they were going.

“You do realize,” he had warned sympathetically, “that you may be coming back with no more answers than you have now?”

“We realize
everything
,” Barney had replied.

Harry was almost comatose from all his medication, and Barney and Laura took turns holding him in their laps. Not because there wasn’t room for him on the middle seat, but because they needed to touch him—both for his sake and for their own.

So that if the worst occurred, they would at least have precious tactile memories. How it felt to press him to her breast. How it felt to hold him with an embrace so tight Barney was afraid he might be crushing him.

It was primal. Barney wanted to shield his son from everything bad. He kept murmuring to reassure all three of them, “Mommy and Daddy will never let you go. Never, never, never. We’re here, Harry, we’re here.”

At the same time, Laura was obsessively thinking, If I
could only take you back inside me, Harry. So I could
protect
you.