We Own the Sky

by Luke Allnutt

  * * *

  It was evening, Jack had gone to bed, and Anna was reading in the living room, her legs over one arm of the chair, a glass of wine in her hand. I watched her as she read. There was a small mole on the side of her cheek, which she’d had since she was a girl. A hair was now growing in its center. At first I thought she hadn’t noticed, that she had simply been preoccupied with everything, but the hair had now started to curl, growing to the length of a fingertip.

  If, before, you had said to me: imagine yourself in this situation. How would you react? How would you spend each day when you have been told your child is going to die? I didn’t know what I would have said. Perhaps I would have imagined long evenings of tears, of beating our fists on our chests, of begging, cursing God on our knees, and praying, praying, praying for a miracle.

  It wasn’t like that. It was the mundanity of it all that crushed me. The way that things that once glittered were now rotten, steeped in tarry grief. I could not watch Jack pushing his fish fingers around on his plate or see him mouthing along to Peppa Pig without feeling an inordinate sense of loss.

  It was the little things, always the little things. Seeing food in the freezer that I had made when Jack was healthy. My antivirus program asking if it should run a full-system scan, because who cared if I had a computer virus now. Sullen old people in the street, scowling as they lugged their tartan grandma carts up the hill. Did they not realize what they had? The luxury of old age.

  Anna had taken leave from work and Jack was off school, and we waited on him, played board games, made endless rounds of cheese on toast. Surely, surely, there was more than this? Fish fingers and Peppa Pig. Shark in the Park. Marathon sessions of Guess Who and Hungry Hippos. Shouldn’t we be doing something, anything, not this?

  As I opened the laptop, there were some tabs open in the browser, one of them a Google results page. The string was still in the search box: “How do you tell a six-year-old he is dying.”

  I read it out loud, almost without thinking, and Anna glanced up from her book, a puzzled look on her face.

  “Your search.”

  “Right,” she said.

  “So is that what you think we should do?” I said softly. “Tell him he’s dying.”

  “I don’t know, Rob, that’s why I was Googling it.”

  I tapped my fingers on the arm of the sofa. Could she not even discuss it with me? Sometimes she was so infuriatingly straightforward about everything. “I don’t think we should tell him anything,” I said, “especially when we don’t know anything for certain. There are still options. We can’t just give up on him.”

  “We’re not giving up on him, Rob,” Anna said, turning her body away from me. “But we have to face reality. And you keep talking about options, but what options are there?”

  “Well, there are cancer clinics all around the world, places I’ve been reading about. And then there’s the trial Dr. Flanagan mentioned...”

  “Please, please, don’t start on about the Marsden trial again. We’ve spoken about it, and I don’t know what else to tell you.”

  “I wasn’t going to actually, Anna,” I said, my face and neck prickling with heat. “What I’m saying, if you’d just listen to me, is that I still think there are options out there. I think we’ve only really scratched the surface with the doctors we’ve seen. There are other kids out there who’ve had what Jack has and have been cured...”

  “Don’t say that word,” Anna said, looking at me angrily. Her eyes were dark, opaque. “There is no cure, Rob, there is no chance of a cure, not in cases like this. You don’t think I’ve been researching this, as well? I’ve also read about the new drugs, and the trials, and at the moment there is nothing—nothing, Rob—to suggest that any of this would work for Jack.”

  A deep crimson flush spread across Anna’s cheeks. She turned sharply toward me, nearly spilling the wine in her glass.

  “And before you interrupt me again and tell me I don’t know what I’m talking about, that’s not just me saying that. It’s the doctors, Rob. And before you accuse me of not caring, or ‘giving up,’ I’m happy to go for a third and a fourth and a fifth opinion if that’s what you want, but they’re going to tell us exactly the same thing.”

  “But we can’t know that.”

  “We can’t know that? Well, we can’t know anything can we, Rob? Dr. Kennety, Dr. Flanagan, they’re two of the leading specialists in the world on pediatric brain tumors, and they have both told us the same thing. God, Rob, Jack isn’t something you can program. He’s not a machine you can hack. You can’t just waltz through this like you do with everything else...”

  “Why are you even bringing that up? It’s not about that...”

  “Yes, it’s not, it’s about Jack. It’s about Jack’s quality of life now. It’s about making sure he doesn’t suffer on some trial that has almost zero chance of working. Just so we can make ourselves feel better, that we did something.”

  Anna saw the rage on my face and stopped and took a deep breath. “Sorry, that wasn’t fair. I didn’t want to imply that you would do anything to hurt Jack. I just don’t see any other way. There’s nothing they can do, Rob. It breaks my heart just as much as yours, but we have to listen to the doctors.”

  Listen to the doctors. Anna always had an inordinate amount of respect for the professions. The doctors, lawyers, teachers of the world—the type of person you would ask to countersign a passport photo. Because in those people, she saw herself. Hard work, prudence, judiciousness. There was, she thought, a nobility to these professions, and to question them was unthinkable. Where I grew up in Romford, those people were often the enemy. They didn’t get a free pass.

  “I’m sorry,” she said, touching my arm. “I don’t want to argue. I just think that all we can really do is enjoy our time together.”

  “Enjoy,” I said, cutting her off. “How are we going to enjoy any of this? We’re just sitting around, doing fucking nothing.”

  The muscles in Anna’s neck stiffened, and she put her wine on the side table. The glass rocked slightly on the mat. She picked up her book and left without saying a word.

  * * *

  I went to check on Jack, and he was sound asleep. I tucked the covers under his body, cocooning him, and put Little Teddy in the crook of his arm.

  In our bedroom, I could hear the faint sound of water running, of Anna in the shower, so I went downstairs and poured myself a whiskey and stewed at my desk.

  I logged in to Hope’s Place—now an almost hourly ritual—and there was a new thread at the top, already with pages and pages of posts. The son of one of the forum members had died and they were honoring him, replacing their profile pictures with his, a little boy, his face lopsided, as if he had suffered a stroke. He was courageous, they said, a warrior. Heaven had gained an angel.

  I couldn’t read any more. They were just wasting time, with their sunset photos, their Thankful Thursdays and Welcoming Wednesdays, their ruminations about “gratitude” and “mindfulness.” Because all their talk of being “brave” and “blessed” was a delusion, a ruse, which sugarcoated the unpalatable truth that their children were dying and they were doing nothing to save their lives.

  Then I remembered Nev. What was the name of his son again? I pulled up my email and found his note from a few months ago. Josh, that was it. His son had had glioblastoma and been treated at the clinic in Prague.

  I read Nev’s email again and started researching the clinic and the doctor he had recommended. Dr. Sladkovsky’s website was sleek, easy to navigate, and I began reading about the clinic’s patented immuno-engineering treatment. Patients had their blood drawn and their T-cells reengineered with a vaccine. The blood was then injected back into their bodies. It was, according to Dr. Sladkovsky, beautifully simple. Just a case of enhancing the body’s natural immune system rather than destroying it with chemotherapy.

&n
bsp; I started to watch video testimonies of patients who were treated at the clinic. Kirsty, twenty-three, had pancreatic cancer. They filmed her soon after she arrived. She looked hollow, her head wrapped in a scarf, a scaly red rash covering her neck and face. The voice of a solemn narrator said that under the standard of care for stage IV pancreatic cancer, she would die within six months.

  And then we saw Kirsty again, now with a short crop of blond hair, sitting up in bed and talking to her father on Skype. She had good news, she said, her voice cracking, her eyes filling with tears. “It’s working,” she said, swallowing her sobs, “it’s working, Dad.” Then, Kirsty again, a few years later, whizzing around with a toddler on a roundabout, her husband in the background cradling a newborn infant.

  I watched another, the mother of a boy, Ash, who had an advanced brain tumor. An American, she was filmed in her living room. The lighting was pale, and it was like a front room from the 1950s, pristine but unlived in, and I thought that the boy must have died. But then the filters changed, and it was as if Ash’s mother had been made over, like the before and after shots in a trashy weekly mag. And there was Ash, gorgeous little Ash, running around, looking older, healthier, not knowing or caring why he was being filmed because there were trees to climb and creeks to jump.

  It was too good to be true. There would be a catch, a caveat, something that wasn’t obvious at first.

  Subject: Re: Jack

  Sent: Tue Nov 11, 2014 8:33 am

  From: Rob

  To: Nev

  Dear Nev,

  I don’t know if you’ll remember me but we were briefly in touch a couple of months ago.

  I’m afraid we’ve had some bad news. Last time I wrote to you, Jack was doing well after his operation. Unfortunately, his tumor has come back in a more aggressive form. Jack now has a glioblastoma with additional seedling tumors throughout his brain. The doctors have said there is nothing they can do.

  I have been reading about Dr. Sladkovsky’s clinic in Prague and I wondered if you could give me more information.

  Also, and I hope you don’t mind, but can I ask exactly what treatments Josh had? Not just at Dr. Sladkovsky’s clinic but everything. And to be clear: Josh had grade 3 glioblastoma multiforme, right?

  I hope that’s not being too intrusive. As I said, I have read your blog detailing Josh’s treatments but I want to be 100 percent sure I understand correctly.

  Sorry to be writing to you out of the blue like this. I hope you understand.

  Best Wishes,

  Rob

  box hill

  mommy was away for the weekend with work so we took a day trip, out of london and into the countryside. it was amazing that day, jack, blazing hot, and we drove up the windy road to the top of box hill and then sat at the lookout point and ate sandwiches and jaffa cakes. i remember how you liked to nibble the chocolate, jack, and then scrape the jelly off with your teeth, just like daddy showed you. chocco first then jelly. chocco first then jelly.

  15

  We could only ignore the phone calls, the emails, the Facebook messages for so long. The people who just wanted to check in because they had heard Jack had been taken ill. The friends who offered to pop around, just for five minutes, to catch up on our news.

  Anna suggested sending another email to all of our friends. That way, she said, they would leave us alone. I shrugged, said that I didn’t care either way.

  The replies came quickly, filling up our in-boxes. They couldn’t believe it, they said. They were crying, shaking, couldn’t think about anything else. Why was this happening to us, they asked, why oh why? And was there anything they could do? Could they bring us food, help clean the house, anything really, anything, because they just felt so helpless.

  And how was Jack? How was he taking it all? Such a terrible thing to happen to a little boy, because they knew how much we treasured him. They knew because they knew how much their own children meant to them. God, they couldn’t even begin to contemplate what we were going through right now.

  Then I saw the status updates on Facebook. Friends, friends of friends, people we didn’t even know so well.

  Just received some very sad news...

  Devastated, blown away...

  Sometimes you get reminders that life is so terribly short. Never forget to hold on to what you have.

  I counted: Jack, by proxy, was the recipient of 126 likes. Just as I was thinking how to respond, the posts in my feed were no longer about Jack.

  RIP David Frost.

  So sad right now: RIP Sir David.

  *Crying now* this man was a genius. RIP.

  Within minutes, Jack was forgotten. Gutted, they said, absolutely gutted. Because Frost/Nixon had always been their favorite movie. Because they don’t make journalists like that anymore, a true gent, integrity to the core, better than Murdoch and his phone-tapping hacks.

  “Too soon,” they all wrote. Too soon. Those two little words bounced around in my head. Too soon. He was seventy-four. He’d had his three score and ten. David Frost had probably spent more time on the toilet than my son had been alive. Too fucking soon?

  Subject: Treatment

  Sent: Tue Nov 11, 2014 10:59 pm

  From: Nev

  To: Rob

  Hi Rob, really sorry to hear your news. I know what a terrible time it is and how there’s nothing anyone can do to make it better.

  Right, so down to practical matters. As for Josh’s treatments, he was diagnosed over three years ago and, yes, with grade 3 glioblastoma multiforme. He had his tumor resected at the Royal Preston Hospital in 2009. After that he had Gamma Knife radiation therapy for a few microscopic nodules.

  We were told shortly after that that there was nothing they could do and all that was left was palliative care. That was when I started looking into Dr. Sladkovsky’s clinic. It’s expensive but it saved my son’s life. Please don’t hesitate if you need any more details. Happy to talk by email or on the phone (01632 532676) any time you like.

  Take care,

  Nev

  My phone rang and it was Scott.

  “Hi, Rob.” His tone was formal, awkward, his phone voice.

  “Hey,” I said, and for a moment he didn’t speak, and I could hear what sounded like a café or bar in the background.

  “I’m so sorry to hear the terrible news.”

  “Thanks.”

  Another pause, the faint sound of him chewing gum. “Please let me know if there’s anything I can do,” he said.

  I didn’t reply. Anything I can do. I had heard that phrase a lot in the last hour.

  “You should have said, mate,” Scott said, his tone less formal, old friends chatting in the pub. “You should have told me, maybe there was something I could have...you know. It was just the group email was such a surprise... I thought everything was...”

  “Are you unhappy about the way we told you, Scott, with the email?”

  “No, no,” he said, stumbling over his words. “I didn’t mean it like that...”

  “Should I have come around and told you personally? Would that have been better for you?”

  “No, mate, sorry, that’s not what I meant. Please don’t be like that. I just wanted to let you know that you can call anytime, or we can grab a beer or something, talk about stuff.”

  Talk things through. As if we were discussing Scott’s latest failed relationship, or West Ham’s struggles in midfield. He started to say something about a doctor he knew, someone who owed him a favor, but I hung up the phone.

  Subject: Re: Jack

  Sent: Thu Nov 13, 2014 8:33 am

  From: Rob

  To: Nev

  Dear Nev,

  Thanks very much for your information about Josh. To be honest, I was a bit skeptical at first about Dr. Sladkovsky’s clinic. I’ve read lots of criticism
on Hope’s Place, so it’s very interesting and encouraging to hear your story.

  We are rapidly running out of options. Yesterday, the doctor told us that Jack hadn’t been accepted on the clinical trial at the Marsden. Now they’re saying that chemo is all that’s left and that will only slow things down at best.

  I would take his place in a heartbeat, if I could. I would give him my brain, everything, if I could. I just don’t know what he has done to deserve this.

  I’m very sorry for telling you all of this, Nev, as I know we don’t know each other. As you’ve gone through all this before, I just thought you’d understand.

  Take care,

  Rob

  Subject: Re: Jack

  Sent: Fri Nov 14, 2014 10:42 am

  From: Nev

  To: Rob

  Dear Rob,

  Your little boy did nothing to deserve this and don’t you ever forget that. I did the same when my Josh was diagnosed, constantly asking myself why. Why Josh? What did he do? What did I do? Was there something that could have prevented it? Was it because we lived near that cell phone tower? Was it all the chemicals they put in that baby food?

  I do understand what you’re going through though because I went through the same. I constantly thought about a world without Josh and it just destroyed me. I suppose that was what pushed me toward the clinic in Prague. Nothing the doctors said here made any sense anymore and I just felt like we were wasting time.

  I’m so sorry about all this. Please always know that you can talk to me about this stuff any time. I’m only an email or a phone call away.

  Take care my friend.

  Nev

  PS I’m attaching some pictures of Josh so you can get an idea of what the treatment involves. They’re from when he was diagnosed and go right up to now. (There’s more of them on my blog, nevbarnes.wordpress.com)

  I started clicking through the photos. Josh’s first chemo. Josh, now completely bald, coming out of an MRI. Josh sitting up in bed, a cannula in his arm, with Dr. Sladkovsky standing next to him.