* * *
We woke and listened to the sounds of the hospital waking up. The chatter from the nurses’ station, the orderlies discussing last night’s football. The tyranny of other people’s lives.
We sat in chairs by the bed, without speaking, only interacting with Jack. The world existed, but it existed somewhere else. It felt like I was swimming underwater with only a vague impression of what was going on above the surface.
Knowing what we knew now, how could I even look Jack in the eye? To keep such a secret from him, as he sat in bed eating toast, expecting that tomorrow he would go back to school. How could we betray him like that?
* * *
“First of all,” Dr. Flanagan said, as we walked into her office that morning, “no twenty-minute restrictions today. We will take as long as you need. Okay?”
We nodded as we took our seats, too scared to speak. “I spoke to the multidisciplinary team this morning. That’s the radiologist, Dr. Kennety, another neurosurgeon, and we are all in agreement that an operation would not make any sense.”
The doctor waited for us to speak, but we sat, silent, motionless. “What we were all agreed on is to start some chemotherapy, to see if we can shrink the tumor.”
“And could this...” I said, trying to steady my voice. “Could this get rid of the tumors, I’ve read that sometimes...”
Dr. Flanagan waited for me to continue, but I couldn’t finish my sentence. She leaned forward over her desk and looked at us both. “I’m so sorry, there really is no easy way to tell you this, but any treatment that Jack has will only be palliative. It will just be a matter of trying to prolong Jack’s life.”
Palliative, the word’s horrors hidden behind the softness of its vowels. Hospice and rose gardens. Busybodies who brought in their dogs for the dying to pet. A place where old people spent their final days listening to Muzak and well-meaning lay preachers. Palliative: not a word for a child.
It was Anna who asked. I was glad that she did, because I could not.
“So how long?” she said. “How long does Jack have left?”
Dr. Flanagan took a deep breath. “It’s impossible to say exactly,” she said. “A typical time frame might be a year, with treatment. Perhaps less. Just so you know, we do have counseling services available if you’re interested. But for now, as heartbreaking as it is to say, it might be best to focus on enjoying your time together.”
Enjoying our time together. The implication that Jack was no longer infinite. A year. How could she say that? Had she seen him, just three days ago, kicking a football around in the backyard? Surely it was a mistake. They were just going on pictures, images on a scan.
“I really am so sorry,” the doctor said. “I know parents hate to hear this, because they think it means that we’re giving up, but now it’s just about making Jack as comfortable as possible.”
Comfortable, like an ailing aunt who desired no more than a good pair of bed socks and some chamber music on the radio.
“And is there anything experimental?” I asked. “Clinical trials, new drugs that we could try?” I could hear my voice tremble.
Dr. Flanagan made a note on her pad. “I have looked and will keep looking,” she said. “But at the moment there doesn’t seem to be anything that’s appropriate for Jack. There is one, though, at the Marsden. It’s actually for leukemia and melanoma, a phase 1 trial, but I think Jack might fit the genetic profile. I will check with them today and let you know, although I think there is only a very small chance they would take him.”
“Thank you,” I said, and there was something I wanted to ask, but I grappled with my words, trying to find the right way to say it. “I just don’t understand why... I thought he was cured...you said...a 90 percent chance that he would be fine.”
The doctor leaned forward again, and I thought for a moment she was going to grasp my hand. “I’m afraid Jack was one of the unlucky ones,” she said. “What happened, his tumor transforming like that, is really very rare.”
Rare. We had heard that word before. His tumor was rare. It was rare that he was diagnosed so young. And now it was rare that his tumor would mutate and become malignant. Did they tell us all that to soften the blow? As if it was a freak accident, something that was beyond our control.
We took a taxi back from Harley Street to the hospital. After seeing our stony faces, how our bodies were angled away from each other, the taxi driver was silent on the way back to Hampstead. We listened to the click-clack of the blinker, the rain beating down on the roof of the car. I took out my phone and started to search for the clinical trial the doctor had mentioned, struggling to keep the screen straight as we went over bumps in the road.
I turned to Anna when we were stuck in traffic. “I’ve been researching that Marsden trial,” I said, “the one that Dr. Flanagan recommended.”
Anna looked at me but didn’t say anything, her face a ghostly white.
“From what I read, it seems like it might be something worth trying.”
“She said it was for kids with leukemia and melanoma.” Anna’s voice sounded robotic, without emotion.
“Right, but it’s also Jack’s genetic profile.”
Anna turned away to look out of the window again. I saw the taxi driver staring at us in the mirror and then quickly look away.
“It’s as if we were listening to different conversations,” Anna said, still looking out of the window.
“What do you mean? This was something she recommended. That’s what she said.”
“It wasn’t something she recommended,” Anna said. “It’s something she said she would ask about. She said there was
