We Own the Sky(55)
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.
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.