We Own the Sky

by Luke Allnutt

  There was one photo in particular that I couldn’t stop looking at. It was of Josh sitting on a rock on a beach somewhere. His face was fuller, his hair now long, curly and blond. He was squinting, the sun in his eyes, at his feet flippers and a snorkeling mask. He looked so different to the sick, gaunt little boy from before. Josh was older. He had aged. He was alive.

  * * *

  A new batch of pills had arrived. Vacuum-packed, in boxes covered with space foil. They were Chinese imports, delivered in twenty-four hours from a Swiss company I found online. Hydrazine sulphate, Indian frankincense, resveratrol, zinc, an acne drug called Accutance, which recharged the immune system.

  Every day I was researching, staying up late with coffee and whiskey, reading anything I could get my hands on. The information was out there, but it was hidden behind all the noise, the chatter on patient forums, the dietary advice, all the guff about butter beans and the guyabano fruit. It was there, though, if you knew where to look, on the stock-market newsletters, the oncology forums, the clinical-trial databases, which could easily be hacked.

  I learned quickly. It was like becoming fluent in a new programming language. I understood now how to read between the lines of drug companies’ press releases. I understood that what worked in mice didn’t necessarily work in humans. I understood that even if Jack was denied entry to a trial, there were still options: getting medication on compassionate grounds; clinics in China that cloned leading trial drugs and offered bespoke services for clients who could pay.

  Because there were children who survived what Jack had. You had to dig deeper, follow leads, links, obscure blogs. But it was all there: hyperbaric oxygen chambers, proton therapy radiation, a surgery called devascularization, which was only performed in Barbados.

  They called these patients anomalies. The ones who got better, that defied the odds. The doctors talked of them as if they were a phenomenon, in the realm of the supernatural, an occurrence that was beyond the understanding of medical science.

  But the truth was that the doctors just didn’t know why some patients got better. One day, when the genome had been decoded and unraveled, it would all make sense. It would be as self-evident as gravity or the laws of motion.

  Some things could always be hacked. In computing, if there was a problem, you build around it. You code it out, program a cheat. But to do that, you had to take a chance. I remembered at school when they locked me out of the computer room. They said I wasn’t spending my lunch hours appropriately, not using the computers for their designated purpose. So I hacked the system from home, made myself an administrator, and moved like a ghost through the school’s network.

  Anna never really understood that part of me. She thought I was reckless, a risk-taker, even about the littlest things. For refusing to pay for travel insurance on a flight. For insisting on carrying around large wads of cash. For her, there was always protocol, a proper way of doing things. Anna’s rules. Always arrive early. Always eat a small dinner. Always fold your clothes before bed.

  Now I was being reckless because I wanted to save my son. Listen to the doctors. Follow the “standard of care.” But none of that would work for Jack. If we followed the doctors’ advice, Jack wouldn’t stand a chance.

  * * *

  It felt like returning to the scene of the crime—to be walking through the gates of Amberly Primary, this time for the Christmas Fair. How different it was to the fireworks night. Then, Jack had bounded through the front doors, greeting his friends, showing us his artwork on the walls.

  Today, he was withdrawn and frail. He kept close to us, and I could no longer pretend he wasn’t ill. He moved slowly, with careful considered steps; his lips were blue, his face pale, like a boy with a weak heart I remembered from school. People stared at him and then quickly looked away.

  As we waited for Anna to buy entrance tickets, I fussed over Jack’s coat, trying to avoid eye contact with people passing by. It was strange to be out in public. It had been a month since Jack collapsed on the stage at school, and we had mostly cut ourselves off from the world, politely declining the careful and considered offers from friends. Anna was now just working mornings, so in the afternoons, if Jack was feeling up to it, we went out: to the cinema, the dinosaur park, the traveling pirate road show. Our life felt like it was on the most monstrous kind of hold.

  Chemotherapy provided a new rhythm. Jack went to the hospital once a week as an outpatient and then spent the next few days recovering at home. There was a small amount of a comfort in that routine. It gave us something to prepare for, something to do. We could buy the little cartons of orange juice that he liked, or the soft candy that, sometimes, was the only thing he could stomach. We could launder and iron his Spider-Man bathrobe and make sure his hospital slippers were clean.

  We both agreed it would be too much for Jack to go back to school. He said he didn’t mind—he could do his reading and writing at home—but he missed his friends. There had been playdates at home, visits that were tightly supervised and controlled, as if Jack was a young prince, his servants and courtiers lurking in the background in case anything went awry. Even though I loved seeing Jack’s joy at playing with his friends, I hated those visits. The awkward elliptical conversations we had with the parents, where we tried as much as possible to talk about them, about their lives. The unbearable gravity of those lingering goodbyes.

  I looked at some pictures on the wall with Jack, a school project from room 1C, words stuck over interlocking rainbows. Jack traced the letters with his fingers and softly spelled out the word. S H A R E. Share.

  Outside, the air was sweet with the earthy tang of roasting chestnuts and mulled wine. On the patch of grass where we had stood to watch the fireworks, there were now stalls selling bric-a-brac, a juggler and a ball toss where you could win a teddy bear. Children charged around from stall to stall, buoyed on sugar and the looming end of term.

  Jack suddenly looked very scared and gripped tightly to Anna’s hand. We walked across the playground and passed some parents from Jack’s class, but they didn’t say hello, their heads bowed, pretending they were on their phones. It didn’t matter. I didn’t want their pity, their sideways glances, the lengths to which they went to pretend that nothing was wrong.

  We headed toward the tombola and the hot-chocolate stand. Jack walked with an old person’s gait, carefully, as if he was on ice and he was scared to fall.

  “Look, Jack,” Anna said, pointing to two boys. “Isn’t that Martin over there?”

  Jack shrugged and tightened his grip on Anna’s hand. “Do you want to go and say hello to him?” she said, as we walked past a stall selling handmade Christmas decorations.

  Jack shook his head and looked away from where Martin was standing. Martin Catalan was the first friend at school that Jack had really adored. We were always amused when Jack said his name. It was never just Martin, but always Martin Catalan.

  According to Jack, Martin Catalan could do everything. He could run faster, throw farther, jump higher than any human. At the age of just three, he could read, write and add up with numbers bigger than a million. He had read books—the biggest books in the whole world—and was so good at football, he already played for Spain.

  I had seen Martin Catalan once at a school function, and there was definitely something about him. While the other children had their shirts untucked, their noses running, Martin Catalan was pristine: a crisp white shirt and cords, his slicked-back hair emphasizing his broad Musketeer’s jaw.

  “Why don’t you go and say hello, Jack?” I said. “I’m sure Martin would love to see you.”

  Jack would normally correct me if I said Martin, insisting on the full Martin Catalan, but this time he didn’t answer and just buried his face into Anna’s coat.

  A little later, while Anna was in line at the hot-chocolate stand, I lost sight of Jack. I had turned away for a moment to give Anna some change
, and suddenly he was no longer there. I panicked, frantically looked around, until I saw him, a forlorn little figure standing under the floodlights, watching the children on the bouncy castle.

  Jack stood, as still as a statue, taking it all in: the whoops of delight; the shoes haphazardly discarded on the tarpaulin; the bobbing heads above the bright yellow parapet, as the older boys pushed into each other, trying to collapse the castle’s sides.

  “Are you okay, beautiful?” I said, putting my arm around him as Anna arrived with the hot chocolate. “Do you want to go and sit down somewhere?” I asked, but he pulled away from me, and even in the dark I could see the glisten of tears in his eyes.

  “I want to go home,” Jack said, looking at the bouncy castle.

  “But we just got here, Jack. I thought you wanted to see your friends.”

  “I don’t have any friends. I want to go home.”

  “No, sweetheart, don’t say that,” Anna said. “You’ve got lots of friends.”

  Jack shook his head, defiant. “No, I don’t have any friends. You’re telling lies.”

  Just at that moment, Martin Catalan appeared beside us.

  “Hello, Jack,” he said and smiled, his clothes and hair immaculately groomed.

  Jack turned around and saw Martin and his face lit up.

  “Do you want to come on the bouncy castle with us?” Martin said.

  Jack was beaming and quickly trying to wipe his tears away without Martin seeing. “Can I, Mommy?” he said, looking up at Anna.

  “I don’t know, Jack,” she said, watching some older boys doing belly flops. “It’s very rough on there, with all the big boys.”

  “It’s okay,” Martin said. “It’s my brother. I will tell him he has to get off.”

  Without warning, Martin ran back to the bouncy castle and shouted something to the older boys. One of them, an older version of Martin, looked over toward us and then nodded and jumped down onto the mat. One by one, the other boys followed Martin’s brother until they all stood in a line blocking the entrance.

  “Is it okay now, Mrs. Coates?” Martin said, as he came running back. “We can go there on our own, and my brother will stand guard and not let anyone else on.”

  Jack looked up at Anna and then me.

  “Okay,” Anna said, and I knew that it petrified her, but we knew we had to let him go.

  “And can Tony and Emil come, as well?” Martin said, and we hadn’t noticed Jack’s friends lurking behind us. “I promise we won’t jump too high.”

  “Of course,” I said, “but Jack, you be careful, all right?”

  He nodded and they walked toward the bouncy castle, Martin’s hand protectively around Jack’s shoulders.

  “I’m not so good at jumping anymore,” we heard Jack telling Martin as we followed behind at a safe distance.

  “That’s okay,” Martin said. “We can do little jumping... Look, watch this.” He breathed heavily out of his mouth, making a little cloud of fog that hung in the air.

  “Cool,” Jack said, and he did the same, his breath glittering under the floodlights. “We’re like dragons.”

  They joined Tony and Emil on the mat, and I couldn’t hear what they were saying, but I imagined Jack was telling them about his tumor, tapping the side of his head and showing them his scars.

  We had seen Jack and his friends on bouncy castles before. They would charge and dive, attempting somersaults and scissors kicks. This time they were all perfectly restrained. Martin Catalan chastely took Jack’s hands, as if they were at a barn dance, and they began to gently bounce up and down. Tony and Emil did the same, resisting the urge to charge into the walls or leap over the sides.

  Anna and I stood next to the boys’ discarded shoes, drinking our hot chocolate and just for a second—like that moment on waking—I forgot why we were here. Because Jack was just like any other child enjoying the Christmas Fair. For a blissful moment, his world was not like an hourglass running out of sand.

  After a while, the boys were starting to slow down and Martin’s brother couldn’t hold off the waiting children anymore. Martin, Tony and Emil helped Jack down onto the mat, fussing over him, helping him put on his shoes.

  Before they parted ways, they hugged, formerly, as if they were consoling each other. The dignity of old men who had seen it all. Martin Catalan was the last to embrace Jack. They held each other for a little while, Jack leaning on Martin’s shoulder, Martin’s hand cupped protectively over the side of Jack’s head, the side where his tumor was.

  * * *

  I printed off a few more articles about Dr. Sladkovsky and put them in the folder I was preparing for Anna. It was just the way she would like it: methodical, neatly bound together.

  I read another interview with the doctor about what had driven his research when he was a young oncologist at a provincial Czechoslovakian hospital. It was the outliers that fascinated him the most, the patients whose responses defied explanations. The miracles. Why did they get better when others didn’t? Study the outliers, Dr. Sladkovsky surmised, those rare cases of remission, and you might find a cure.

  I read through more discussions about Dr. Sladkovsky and immuno-engineering on Hope’s Place. There were more skeptics than believers. The treatments were unproven and offered no more guarantees than traditional chemotherapy. A snake pit, a money suck, they said.

  But what about Josh? That was what I kept coming back to. If it worked for him, it could work for Jack. I remembered a comment that Dr. Flanagan had once made. She said that what doctors understood about cancer was just the tip of the iceberg. There was so much more they didn’t know, she said.

  She had meant it, I think, as a kind of salve, a way of telling us that Jack’s disease was so fiendishly complex that there really was nothing we could do. But I took heart from what she said. What if Jack possessed a certain genetic mutation, one that was unexplored, uncharted by medical science? And what if that mutation enabled him to respond to certain treatments, just like Josh had?

  I was normally the first to sneer at homeopathy and iridology and all that rubbish. I was a programmer. I lived by data and dreamed in code. I was always banging on to Anna about the dangers of bad science. But every time I told myself to forget it, that the Sladkovsky skeptics were probably right, that Nev was just some crank, I thought of those testimonials. I thought of Kirsty’s and Ash’s mother and James and Robson and the little girl called Marie who had a brain tumor at the age of eleven and was now going to the prom on her daddy’s arm. These children were not a data point in a clinical trial, they were flesh and blood.

  I checked online the flights to Prague. There were more than ten a day, and we could be door to door in about five hours. I was researching hotels near the clinic when my email pinged.

  Subject: Re: Jack

  Sent: Tue Dec 2, 2014 12:05 am

  From: Nev

  To: Rob

  Hi Rob,

  Got some great news from the hospital today. Another clean set of scans for Josh.

  No signs of cancer and all tumor markers are at the lowest level since diagnosis. Of course, we do have to make sure he gets tested over the next few months and years, but every clean scan is another big step in the right direction.

  We took him for his treat after the scans and went to see Star Wars in the cinema. (They’re showing all the old ones in our local.) He absolutely loved it and it was so amazing to see him enjoy it like I did as a kid all those years ago.

  I wondered whether I should tell you this as I know you’re going through a hard time right now and didn’t want to be insensitive or nothing. Anyway, mate, I’ll sign off now.

  There is hope, Rob. Never give up, my friend.

  Nev

  PS Jack’s probably a bit young for Minecraft but Josh is really into it at the moment. He’s just built this castle and said he wanted to send it
to Jack to cheer him up. (I told him Jack was poorly.) I’m sending you a screenshot. Hope it comes through okay and Jack likes it.

  I clicked on the Minecraft screenshot, an 8-bit block with turrets and a flagpole and a sign that said Jack’s Castle. Looking at that castle made me cry, but not because I was thinking about Jack. It reminded me of when I started programming, writing little scripts on the old laptop my dad picked up from a garage sale.

  I looked at the castle again. I could imagine Jack playing Minecraft when he was older, constructing houses, planting trees, climbing mountains that led to new worlds. Sometimes, I let myself daydream like that. The things I would do with Jack, when he was older, better. Saturday afternoons in the cinema, Jack in little jeans, trainers with wheels, carrying a vat of popcorn bigger than his head.

  Oh, the things we would do together. Season tickets at West Ham. Dim sum on a Saturday morning on Gerrard Street. All those summer holidays, sitting at the bar together, as I teased him about all the pretty girls.

  They weren’t just fantasies. They were the things I had done with my own dad. The times he would come and watch me play football, and no matter the score, we would go afterward to The Crown for Coke and potato chips. The family TV nights, with fish ’n’ chips on our laps: Dallas on Wednesdays, Minder on Thursdays. Memories were like cartilage: stubborn, tough to break.

  A few months after Mom died, I was looking for a book in the Romford house. I thought I remembered seeing it downstairs, packed away in the sideboard in the living room. It was dusty inside, something that would have horrified my mother. I didn’t find what I was looking for, but under some old trinkets, cookie tins full of buttons, I found some exercise books inside a plastic bag.

  I pulled out the first one, and there were pages and pages of Dad’s small, neat handwriting. I hesitated, not wanting to read something private, but then a sentence leaped out at me: “Cottee on fire. Goddard dire.” I started to leaf through all the books, smiling as I realized what they were: Dad’s match reports of every West Ham game he had ever been to.