The Ice Child (36 page)

Christine Lord was listening, hands clasped on the tabletop. She shook her head. “Everything we do here is between us, the donor, and the transplant surgeon,” she said. “We have to protect identities. It’s crucial.”

“This isn’t a normal case,” Jo objected.

“With the greatest respect, every case we have is abnormal. Every single one is an emergency, a crisis.”

Jo had to literally bite her tongue. She felt like screaming that Sam wasn’t like anyone else, but, just in time, saw how illogical that was. In this room, in these offices, Sam was exactly like everyone else. They were all looking death in the face.

Christine was watching her. “We value every bit of information about donors’ whereabouts,” she said. “People register with every good intention, but they can forget to tell us when they move.”

“John would have done that, I’m sure,” Jo said. She told herself to keep this calm, straightforward tone in her voice. It would do no good at all to get angry, excited. “He left suddenly. He was—he was distressed at the time.”

“If a match comes up, we have contact officers. These are people whose job it is to try and find missing names.”

Jo leaned forward. “Is your contact officer looking for John Marshall?” she said. “Have they found him?”

“I’m sorry, but—”

“Oh, please don’t tell me that you can’t tell me that!” Jo cried. “You
can
tell me. I’m the mother of his half-brother. His half-brother is dying. You
can
tell me!”

Christine Lord shook her head. “I can’t tell you, Miss Harper,” she said softly. “Not because I don’t want to, but because I’m legally constrained not to.”

Jo put her head in her hands.

“Donors must be protected,” Christine Lord went on. “They must be sure that no one will ever come knocking at their door demanding they give bone marrow. We must encourage people to go on the register, and to do that, we must guarantee that they’ll be under no pressure, either from parents or relations, or doctors, or ourselves, to make decisions for them or pressure them in any way.”

“You don’t understand,” Jo said. “I’m not going to pressure him. I have something to tell him, something personal, for his own good. Something from before all this happened.” She blushed. “I have to apologize to him,” she said.

“It doesn’t matter what the nature of the contact will be, we can’t allow it,” Christine replied, as gently as she could. “Imagine what could happen if we gave that information out. Imagine a child is dying, and the family doesn’t care what lengths they go to. Imagine someone calling on a donor, offering them money. Or worse still, threatening them or their families.”

“I’m not going to threaten him,” Jo said.

“I know that,” Christine answered. “But this is the donor’s decision alone, and they must have privacy. We counsel donors, we support them, we do all we can to make it easy for them to donate. We book them into private hospitals, for instance. We pay their expenses. We have people standing by at any hour of the day or night to talk to them, dispel their anxieties, give them information. We act as go-betweens, if necessary, between the donor and medical staff. We provide translators; we contact religious leaders of their faith, if they need one. We make sure their diet and personal preferences are all catered to. But by far the most important thing we do for them, more important than all that put together, is to keep their anonymity and respect their decisions, no matter what they are.”

Jo stared at her. “You mean, if John refused to help Sam, you’d just accept it?” she whispered. “Even if he turned out to be a match?”

Christine spread her hands. “Naturally we’d do all we could to find out what it was that bothered him. Sometimes it’s just the thought of actually giving marrow,” she said. “We’d try to explain all we could. But we don’t press hard. We don’t use emotional blackmail. We don’t even tell them who the patient is. Yes … to answer your question. If anyone refused to donate, we can’t insist. Even if they say yes, even if the patient is prepared for the transplant through chemotherapy, even if the doors of the operating room are open, and the donor is on the gurney, if that donor suddenly says no … well, that’s it. No transplant. No donor.”

“Surely nobody does that,” Jo whispered.

“Personally,” Christine said, “I know of no one who’s withdrawn at such a late stage. But that’s not to say that it won’t, or can’t, happen. People do withdraw.”

“But why would they do that? Surely they know there’s a life at stake.”

“That’s right,” Christine said. “But bear in mind the reasons why they registered. Seven times out of ten they’ll have put their name down because someone they knew was ill and needed a transplant. They gave their blood then to get registered and see if they were a match.” She shrugged. “But times change. Maybe that person they knew died. Maybe they gave bone marrow before, and
that
person still died. Maybe the whole process is so tied up with pain, with terrible memories, with feelings of guilt, that they just can’t go through with it.” She sat back in her chair. “We deal with human beings,” she said. “There are no guarantees, and there are no perfect people with perfect responses. We speak to people under stress all the time. We’re under stress here too. We try to tread carefully, as carefully as we dare.”

“Even knowing a child might be dying at that very moment,” Jo said.

“Yes,” Christine replied. “Even knowing that.”

There was a soft knock at the door. The receptionist came in with a tray of coffee and put it down on the table in front of them. “Would you like anything else?” she asked Jo. “A glass of water? Fruit juice?”

Jo stared at the tray for a second, miles away. Then she looked up. “A glass of water,” she said. “Thank you.”

Christine Lord turned, reached behind her to a small desk, and took out a piece of paper. “There is something I can offer,” she said. She pushed the paper across the table to Jo. “If ever John Marshall contacted this office,” she said, “I could forward a letter to him, under certain conditions.”

Jo gazed at the paper. “You’d do that?”

“I can’t guarantee anything,” Christine said. “But I could keep your letter here. If we ever did get in touch with John Marshall, for whatever reason—
if
we did—I could tell him that there was a letter here from you. But I would only pass it on if he specifically asked me to do so.”

“Thank you,” Jo said.

She took half an hour to sit, alone, in the interview room, and compose what she wanted to say to John.

It wasn’t easy. Her first draft was an outpouring of panic: how ill Sam was, how desperate she was, how he had to come back. Even that it was his duty. Rereading it, she realized that it was a demand, a piece of emotional blackmail. She tore the page from the pad, crumpled it, and tried again.

This time she found all she wanted to say in four short sentences.

John, please forgive me for the terrible thing I said to you.

I’m so very sorry. We badly need your help now. If you can come home, or need help to do so, please get in touch.

She wrote her telephone and e-mail address on the bottom, sealed the envelope, and went back to reception, where Christine Lord was waiting.

“If you ever hear,” she said.

“We’ll do our best.” Christine took the letter and put it in her pocket.

Jo paused one last time, biting her lip. “I don’t suppose you’ll tell me if there are any matches, even if it isn’t John?”

Christine Lord put a hand on Jo’s shoulder. “As soon as there are matches, or a single match, we tell the transplant surgeon,” she said. “We do recommend that he tell you only if he makes the decision to go ahead with that donor. Even then the surgeon will only know the donor’s identity number, not his name. But I can assure you, whenever we have a positive result, none of us here waste a moment’s time. Not a second.”

Jo searched her face. She saw sympathy, but nothing else.

“Okay,” she murmured. “Thanks.”

She glanced once more past the reception, to a corridor with other security and pass-only locks on them. She tried to visualize what lay behind them. Somewhere in those rooms, she knew, John’s name was waiting, a link in a chain that could not afford to be broken. Maybe there were other names there too. People she had never met, whose blood miraculously matched Sam’s. Maybe some of them were close, but not close enough. Maybe some were perfect, but they would refuse to donate.

She would never know.

She looked back at Christine Lord. “Well … good-bye,” she murmured.

“Good-bye, Miss Harper. Good luck.”

Christine Lord listened to Jo’s footstep on the stairs and to the sound of the outer door to the street closing. She went back into her office, and watched again through the window as Jo Harper hailed a taxi and got into it.

Then she walked through to her office and sat down at the computer.

She glanced around herself, at the banks of computers, at the overhead fluorescent lights that strained the eyes; at the huge in-trays of application and update forms, promotional leaflets and appeals, and the precious letters from people asking about donorship.

She caught a glimpse of herself in the mirror on the windowsill: a very tired woman who was always meaning to take a vacation, and never quite found the right time. Past the mirror the spider plants drooped, unwatered, and the wastebaskets overflowed. Since joining the Trust, Christine thought, smiling wryly to herself, there was never enough time for anything. Time was the one element that ran through their fingers. It was the thing they raced against every day. And despite their best efforts both time and money were always running out on them.

She turned to the introductory contact on the top of the pile.

That very morning, barely twenty minutes before Jo Harper had knocked on the door, the James Norberry Trust had received a request for a match for a two-year-old boy. He lived in Cambridge, and he was not responding to ALG treatment.

Christine Lord ran through the patient details. On the top of the search request form a box asked if the search was urgent.
Yes
, the doctor had said.

Date of birth: June 11, 2000
.

Sex: Male
.

Race: Caucasian
.

Diagnosis: Severe aplastic anemia
.

Name: Samuel Douglas Marshall
.

With practiced speed Christine transferred the details onto the search procedure. Class 1 Serology typing, Class 1 DNA typing, Class 11 Serology typing, Class 11 DNA typing, CMV status, referring physician, transplant center, date of diagnosis.

When the information was complete and a profile record had been constructed of Sam’s blood, she switched the computer to search mode.

It was always at this point that everyone working here crossed their fingers and said a prayer. It didn’t matter how long they had been working there, or how many searches they had initiated. When search was instructed, there was this same moment of suspense, while fate unceremoniously shuffled the cards.

It was a massive, awe-inspiring process.

There were over two million donors to search worldwide. Each search was focused on exactly the same components; the HLA antigens in the blood. There were three main sites—HLA-A, HLA-B, and HLA-DR. Twenty-four different possible antigens had been identified, to date, at the HLA-A site, fifty-two at the HLA-B site, and twenty at the HLA-DR site. With each antigen the possible combinations of cross-matching multiplied out of sight. Since every person had at least two antigens at each site, more than six hundred million combinations of HLA antigens were theoretically possible. And through those six hundred million the search engines went roaring away, chasing the matches and mismatches down ever-narrowing tunnels of probability, presenting, examining, and rejecting many times a second.

And the odds lengthened even more at tissue-antigen sites other than HLA sites, whose very roles in transplantation were unclear, undiscovered, or unknown. It was thought that these shadowy sites and levels might be eventually found to be responsible for the failures in transplant, where graft-versus-host disease tore the apparent matches apart, made the body rebel against the incoming marrow, and caused the transplant to fail. DNA testing was already revealing that antigens that were once thought to be identical had, in fact, as many as ten different variations or microvariants within them.

Christine Lord often wondered what they would think of their methods of matching in the future, when the delicate and as yet unknown components of blood and the body were discovered. She wondered if, as an old woman, she would be able to look back and see what an enormous gamble any transplant had been in the year 2000, throwing antigens together, pouring drugs in to combat rejection, messing a whole body’s building blocks of life, shunting together two different people to try to overcome an illness. It was a miracle, when you thought about it, that any transplant at all worked, such were the gigantic odds stacked against it. And yet they did work. And, when they did, they transformed very sick people into well people, and very sick families—grieving families—into places of joy.

Miracles, dancing down the phone lines, the letters, the computer data banks. Miracles coursing through a baby’s bloodstream. Miracles set out in ten-page detail on a drug protocol form in any transplant surgeon’s office. Miracles in the faith and endurance of the parents and friends, who never stopped hoping.

Christine Lord watched the flickering image on the screen in front of her, the only clue to the activity hurtling around the world.

She rested her head on her hand and waited.

Six hundred million combinations. Two million donors. One little boy in an isolation unit in Cambridge. It didn’t bear thinking about, and yet she did think about it. She watched the screen as if it were her own son’s life on the line.

Samuel Douglas Marshall needed to share his father’s rare haplotype with his half-brother. Jo Harper needed to share a different haplotype with John Marshall’s mother.

Christine put both hands to her face and covered her eyes, resting her head in her hands, shutting out the image in front of her.