The Ice Child (34 page)

At that very second she would go plunging down, a scream ripped from her throat, air forced from her chest. Falling, she would see the world flash past in a riot of color. Glimpse those upturned faces, just for the briefest of seconds. And then, suddenly, everything would disappear—the ride, the car, the securing harness. She would be thrown forward, out of her seat, into a vast space, dropping with increasing speed, until she knew with absolute certainty that she would never stop falling, and that the ride, the drop, would go on forever.

It was always at this point that she would wake, gasping. Sit upright in bed, her heart thudding so hard that she thought it would tear right out of her chest. Sometimes she heard the scream pinched in her throat—heard herself gulp it backward, try to contain it. Sometimes the scream itself woke her. Whichever way, she would sit on the side of the bed, gasping for air, bathed in sweat.

The conscious ride was almost the same.

She had no control anymore in her waking world. She wanted so badly to get off this roller coaster. Wanted to stand at the side of the road and look up, as the people in her dreams looked, at someone else strapped into the ascending car. She wanted to be the observer. She wanted to have a day, an hour, to think. To choose.

But there was no time.

And there were no choices.

She had come to London, and was staying with Gina. Sam had just finished a course of ALG—antilymphocyte globulin, cyclosporine, and methylprednisolone, drugs designed to knock out the lymphocytes in his system, and the T cells attacking his bone marrow.

“We’re learning all the time with AA,” Elliott had told her. “Twenty years ago, faced with an illness like this, we were mostly at a loss. It had been known to medicine for nearly a hundred years, but trying to track it, to chase it down, was like running through a shifting maze. We know that ALG works in a lot of cases, but we don’t know really how it works. We assume through immunosuppression, but there’s actually a poor correlation when we try to replicate ALG in vitro acting on AA.”

They had been standing by Sam’s bed. He had been moved to an isolation unit, a small single-bed ward. He had been crying on the first day; his tears wore him out. He was staring at Jo with a blotched, miserable face, his expression full of condemnation.

Why are you doing this to me?

She wished she could lie on the bed and take it for him. Hook herself up to the machines, the drips. She’d switched on the overhead television, but his gaze had skated past the picture, to the window. She’d hesitated, holding the hand he didn’t want her to hold, his grip slackening on her.

“Soon be better,” she’d reassured him.

She had hated herself for the lie. How could she know that? How could she know he’d get better? How could she possibly even begin to find a way through this maze for a child of two, find words that could explain it to him, when she didn’t understand it herself, and was terrified every time he was laid down to be treated? She didn’t know if he would get better, and that was the truth of it. The truth she kept locked away in her head, and clamped down hard whenever she was close to him.

When it had been explained to her—the treatment, the drugs—she’d had a real problem taking the information in. It was as if her brain had shut itself off.
No more, no more
. Going home at night, she’d stay up into the early hours, culling Web sites and downloading their versions of the same drug therapy. In the morning, looking at those printed sheets over breakfast, she invariably found it hard to read. Actually hard to make sense of simple sentences. And she had always used to pride herself on how much information she could retain about all sorts of subjects. She hardly ever needed notes, for instance, when interviewing. She remembered. She just remembered. Always.

Except now.

“I feel as if my brain is dead,” she’d confessed to Elliott. “I hear what you’re telling me, and I think I get it. Then, two hours later, I can’t remember.”

Elliott had only nodded. “It’s normal,” he’d said. “Don’t worry about it. We can tell you twenty times. We don’t mind. It’s no problem.”

No problem. No worries
.

Normal
.

What the hell was normal, anyway, in this crazy, house-of-mirrors world? She no longer knew. She tried to think back to what normal had meant only a couple of weeks ago. Maybe walking through town trying to get Sam not to touch displays, or run off through the crowds, or pick up other kids’ toys. That would have been a normal day. Or sitting alongside him as he splattered a milkshake down himself and her, wresting it off a table and straight into his lap. That would be normal. Trying to stuff a dozen jelly beans into his mouth at once. Normal. Normal Sam. Sitting on her lap looking interestedly at the laptop screen, seeing Gina’s name come up on e-mail. He knew the letter
G;
he knew that, more often than not, whatever followed the letter
G
would make his mummy laugh, and now it was a kind of trick with him, seeing G everywhere, and grinning, party to a secret joke. Normality, Sam. Normality. Remember that? Or lying in her arms at night, thumb stuck in his mouth, eyes drooping, purposefully keeping himself awake.
That
was normal.
That
was her son.

Used to be her son. Used to be.

Now she was in some other place, where none of the usual rules applied. And she glimpsed other people—other mothers, walking along in town, trying to keep their kids close while they shopped, casually wiping their faces while they sat at café tables … God, it was unbearable. She wouldn’t have thought that she could be like this, so angry, so anxious, and still be herself. Still be Jo.

Every day when she looked at herself in the mirror, she would feel faintly surprised to see the same old face staring back at her. She found it hard to believe that the new world, the house-of-mirrors world, wouldn’t show in her flesh, her expression. That the pain wouldn’t be obvious, like a scar, or a birthmark. A distortion, a warp, a piece of the fairground glass. She almost expected to see something horrible, terrible … blood in her eyes, maybe. Skin that peeled back to show the vein. Black mouth, pooling bruise …

She always had to shut off that recurrent thought, the horror movie playing for an audience of one. It was a fact that nothing at all in her was either changing or falling apart. She was the same.

It was not her. It was Sam. It was Sam who was changing.

He had to be kept as free as possible from sources of infection. He couldn’t go to play school anymore. They couldn’t take public transport anywhere. No trains, no buses, no planes. No crowds. No parties. No swimming pool. Not even his paddling pool in the garden, whose water had always used to fill with leaves and soil as he rushed in and out. No more of that. No garden, if she could help it. The heaven-sent patch she had tended for him had become fraught with danger.

His diet had altered dramatically too. He couldn’t eat uncooked fruit or vegetables. His meals had to be boiled, to reduce even ordinary bacteria. No fresh milk. No soft cheese. Only variety boxes of cereal, that could be opened and consumed in one day. Packaged, boiled, canned. It was like being on some long voyage, where they couldn’t get hold of fresh food. A journey into space. A long walk through an empty land. Tasteless, frozen. Bland. Sealed off from the world, turned in on their private anguish, obsessed with their private fight for survival.

The ALG had taken a week.

The worst of all was the fitting of the Hickman line. Because Sam needed so much injected, the Hickman line was designed to make things easier for him, by fitting a permanent line through his chest. Easier … well, yes, she conceded that first night. It
was
easier for Sam. The innocuous-looking plastic adaptor plug hanging from his chest wall was well done; if you looked briefly, and then looked away, you might see little more than the plaster tape holding it in place. But it was, of course, far more than that.

Seeing it as he was brought back from the operating room, something washed over Jo. It wasn’t fright, or revulsion. It was the knowledge that this was unalterable, that the world had heaved and turned, and could never turn back again. Sam, with the line entering his body and threading through his artery, was smack in the closed fist of this storm. She could see him, she could hear him, even touch him—but she couldn’t get him out.

They had put him back, gently, into bed, his eyes opening.

“Hi Sam,” she’d said. “How’re you doing?”

He had gazed at her, his bottom lip trembling. Then he suddenly became aware of the line. His fingers fluttered toward it, at the entry point under his arm. Then, almost in slow motion, his eyes widened, and his hand, outstretched, hovered above his neck.

It must feel as if he’s been invaded
, Jo had thought.
Something has got inside him. Something I’ve allowed to happen
.

“It’s okay,” she’d tried to reassure him. “It makes you a special boy. Special, Sam.”

He’d stared at her.

She saw utter trust in his face.

“Fix,” he’d whispered. “Mummy, fix.”

Somehow she’d managed to smile at him. Fuss the bedclothes over him, smooth his forehead until he mercifully dozed.

And then she walked to the loo, shut herself in, and wept in agony.

The Hickman line went farther, deeper, than she had ever gone. All the times that she’d bathed him and cuddled him and fed him, all the times she’d lain with him on her bed and marveled at him—his skin, his fingers, the extraordinary softness of him, the perfection of him … she had never even got close, she realized. She had never got as close as this drug they were pumping into him. She had never got as close as this plastic line that wove its way to his heart. She had never, would never, get as close as this damned illness, that lived right in the center of him, deep in his bone.

The ALG had started with a test dose for an hour. The nurse had given her a leaflet about the drugs—like any medication it listed the side effects as well as its benefits—and she’d screwed it up and shoved it out of sight, because the list of side effects was so long. She didn’t want to know that it could result in cardiac arrest, liver failure, or renal failure. All she wanted, all she could focus on, was that it would do the other thing. It would make him well. It would bring him back.

Two hours later, at four o’clock in the afternoon, he’d started receiving the main dose. Eighteen hours a day for five days, and, when the eighteen hours were finished, platelets and blood and antibiotic.

She’d stopped crying around the third night or so. The tears were someone else’s, anyway. They belonged to some nameless stranger: some gutless crying woman. A woman who had a tissue permanently fastened in her hand. God, how she hated that woman, that mother who wept when the drugs went into the Hickman. What the nurses thought of her, she couldn’t imagine.

If truth were told, she didn’t care.

Her heart hurt inside her, as if she’d taken a blow right over it. Her ribs ached because she often held her breath without knowing it. She just sat, watching him. She didn’t even feel hungry.

But the worst was to come. Worse than the crying and complaining. Sam became silent, acquiescent, accepting.

His eyes followed the nurses, and then he would watch his mother, his gaze switching between the two faces. And when Jo turned back to him, he would look at her with a complete faith that she could protect him.

And that was the worst of all.

At the end of the week Elliott had told her that she needed to go to London for her stem-cell donation. Though she had been expecting it, its coming so soon after the first ALG had been a blow.

“It’s a form of insurance,” he’d explained to her. They had been sitting in his office again, after Sam had finished on the fifth day. Jo had found herself staring at the same notepad where he drew her his diagrams. Elliott had spoken slowly and carefully, glancing at her to see if she understood. Looking hard at her, he was worried by Jo’s flatness, her dull expression.

“Here’s what will happen,” he’d told her. “We give you a chemical that makes you overproduce stem cells. We harvest them. We can freeze them. They’ll be there if we need them. If the worse comes to the worst. Then it would be worth a try.”

“How?” Jo asked. “How do you do it?”

“We put you on a machine,” Elliott said. “The process is called apheresis. It just means separating the blood, your blood, into different components.”

“Under anesthetic?” she asked.

“No, just sitting in a chair, with a tube in both arms. It takes about four hours.”

“Oh,” she murmured. “Okay.” Her stomach had turned over.

“Five days beforehand we give you a drug called G-CSF. It’s a growth factor. It’s administered by injection, just a little under the skin surface. You have five doses over five consecutive days, at the same time each day. Say halfway through the afternoon.”

“And what happens?” Jo asked. “How will I feel?”

Elliott spread his hands. “Every person reacts differently,” he said. “What we’re doing is making your body mirror the effect of fighting off a virus. So you’ll maybe get flulike symptoms. Muscle aches. Tiredness. Headaches. You might get bone pain, and there’s a good reason for that. It’s a good sign.”

“Why?” Jo asked.

“The bone marrow’s expanding, making more. Making too much. It spills over into the blood. Lots of stem cells, the building blocks of marrow. Good. Now’s the time to catch those cells while they’re circulating round in you.”

“Right,” Jo said.
Christ
, she thought.

“Then, after the harvest, they freeze down your cells. Cryopreservation. They put them in liquid nitrogen, slowly, so as not to form ice crystals. Then they can keep them for a long time. Years, if necessary.”

Jo considered. From feeling nauseous at the idea of having needles in her arms for four hours at a time, she had suddenly begun to see the skill of it all. It was audacious, like taking God on at a game. A little light was turned on inside her. For a couple of days she would be like Sam. She would partner him in his role, in his battle against the anemia. She’d be his running mate.