by Luke Allnutt
We found a good place to watch the fireworks and looked around for anyone we knew, but could see only shadows, ghostly faces occasionally lit up by the glare of the bonfire.
“Can I go up in the air?” Jack said.
“Aren’t you too big now?”
“Nooooooo,” Jack said, with as much outrage as he could muster.
I lifted Jack up onto my shoulders, and it used to be a smooth move, like a weight lifter’s clean and jerk, but this time I struggled, wobbling a little.
“Are you okay?” Anna asked.
“Yep, just lost my footing a little. I’m not quite the powerhouse that I once was.”
“Right, darling,” Anna said, smiling to herself and turning away to watch the fireworks.
The first bars of the Star Wars music began, and I could feel Jack kicking his heels and excitedly holding on to my ears. He loved the fireworks, screaming “wow” after each fizz, flinching at the bigger bangs. When it was finished, gunpowder pungent in the air, he clapped and cheered, looking up into the night sky, waiting, hoping for more.
After the fireworks, there was a little autumn show, and Jack’s class had been chosen to sing the closing hymn. It was “Jerusalem”—one of Anna’s favorites—and I was surprised, thinking it too patriotic, or too Christian, or too socialist, for Amberly Primary.
I watched Jack, his little halo of blond hair lit up by the stage lights, my heart melting as he struggled to remember the words. I could see him blinking into the glare, looking out for us in the audience. And then, suddenly, he wasn’t there anymore. I thought perhaps it was a trick of the light, but, no, there was now a gap where he had been standing, as if he had been excised from a school photo. Just as the children started to sing “And did the countenance divine,” I heard a shriek and then the screech of the piano. We both ran through the audience and jumped up onto the stage. Jack was lying crumpled on the floor, still clutching his book of hymns.
* * *
He probably just fainted, the EMTs said, even though we told them he’d had a brain tumor. Nah, don’t worry, they said, as if we were telling them he had a nut allergy. It was hot in there; kids fainted all the time.
We went in the ambulance with Jack, the sirens blazing, much to Jack’s delight. I looked at Anna. I knew what was going through her head. Dr. Flanagan had said there was a 14 percent chance that the tumor would come back. I knew how her brain worked. Fourteen percent. With a reasonable margin of error, a little bad luck, that was 2 in 10, or 1 in 5.
She sat with one arm over Jack’s blanketed legs, and I knew that she knew. I could see it in her dulled eyes, the way that she hung her head.
* * *
In the hospital, I was watching a Pokémon cartoon with Jack on his iPad when Dr. Flanagan walked in.
“Hello,” Jack said, and smiled sweetly. We didn’t expect her, didn’t know she would be coming to this hospital in a different part of London.
“Hello, Jack,” she said, smiling. “How are you? I hear you’ve been throwing yourself around on the stage.”
Jack smiled and shyly looked down at the iPad.
“And how do you feel now, Jack?” the doctor asked.
Jack tapped his head and then his torso and legs. “Okay, no injuries. But I lost some of my Pokémon cards. They fell down on the floor.”
“Don’t worry, angel,” Anna said. “I promise we’ll find them.”
Jack nodded, unconvinced.
“Excellent,” Dr. Flanagan said. “Now, I want you to try to get some sleep, Jack. You’re going to stay here tonight and then go home in the morning.”
I felt a flush of relief, that perhaps it wasn’t serious, just a minor complication from the operation. Dr. Flanagan looked at Jack’s chart and then nodded at us, indicating she wanted a word outside.
She led us into an unoccupied waiting room. We all sat down at a table on some plastic chairs, and the harsh light made it feel like an interview room at a police station. The doctor took a sip of coffee and she seemed nervous, a state we had never seen her in before.
“So,” she began, trying to look at both of us across the table. “From what we can tell, Jack has had another epileptic seizure.” She paused, swallowed, and I noticed that her lips were dry. “I’m very sorry, but from the scan we’ve just done, it looks like there has been a recurrence of his tumor.”
I didn’t understand what she was saying. They had got it all. Dr. Flanagan told us repeatedly they had got it all. An 86 percent chance he was going to get better.
“Jack’s... Jack’s tumor?” I stammered. “But I thought you got all the tumor out. It was gone, you said it was gone.”
Dr. Flanagan swallowed again, unsettled. Anna sat rigid in her chair, her hands clasped in front of her as if she was praying.
“We got out everything we could see,” she said, “everything that could be seen on the scan, but I’m afraid in a small number of cases with astrocytoma, this does happen. There are microscopic tentacles that grow into the surrounding brain tissue...”
“And that’s what Jack has?” I said.
Dr. Flanagan took a deep breath. “From its appearance on the MRI, it does now look like a glioblastoma.”
We knew about glioblastoma. We saw the parents on Hope’s Place. They posted for a few frenzied weeks and then never came back.
“But...but...it can be removed, right, as before?” I said. “There are treatments...”
Dr. Flanagan shook her head. “I’m so sorry. There is absolutely no easy way of telling you this. The MRI showed many, many tiny microscopic lesions all over Jack’s brain.”
I didn’t understand. It didn’t make any sense. He had been swimming, playing football every day. I looked at Anna, expecting, wanting her to say something, but she was silent, unmoving, her hands locked together.
“And it’s not possible to take these lesions out?”
The doctor shook her head. “I’m afraid not. There are just too many. Even if we could take them out, given how aggressive the tumor is, they would just come back.” She exhaled, rubbed her hands together as if she was applying hand cream. “I really am so very, very sorry.”
I looked at Anna next to me. Her head was bowed, her hair draped over her face.
“And is there any treatment to...to...?”
“We need to talk about this, of course. But first we need to do some more tests.”
Slowly Anna lifted her head up, her eyes glassy, her face gray and pale. Her voice was small but filled the silence of the room. Where I stammered, stumbled over my words, her enunciation was considered and clear. “And does this mean that Jack can’t be cured?”
Dr. Flanagan held her gaze for a moment, calibrating her response. “I’m sorry, I just can’t tell you that now. But I promise you we’ll know more tomorrow.”
* * *
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 a very small chance they would take him.”
I saw the taxi driver’s eyes flicker toward us in his mirror. He reminded me of my dad, the way he used to recline his car seat as far back as it would go. His drinks lined up, his little TV wedged into the dashboard.
I thought back to what Dr. Flanagan said about the trial, but it was just a blur. “So you don’t think we should do it?”
“I’m not saying that, Rob.” Anna paused, her eyes dipping down toward her lap. “Let’s just wait for what the doctor says.”
I nodded, and we did not speak for the rest of the journey. It was as if we were magnets of the same polarity, repelling, pushing each other apart.
The taxi driver was solemn when he dropped us off back at the hospital. I held out a twenty to pay him, but he shook his head. “This one’s on me, mate,” he said, and I could see tears in his eyes.
Sometimes love comes from the strangest places. People don’t realize how much they can break your heart.
* * *
Later that day, we took Jack home. We tried not to be solemn, so we put our faces on, we playacted, stopped for ice cream on the way home.
We all stayed up late watching television. As a special treat, we said he could watch anything for as long as he wanted. We made him special cheese on toast, fed him chocolate and more ice cream. What else could we do?
After Jack finally fell asleep and we carried him up to bed, I opened a bottle of wine and started Googling. There had to be something out there: a caveat to the survival rates, a new treatment, a clarification on something we may have misunderstood. I found studies, forum posts, discussions on Yahoo Answers and Quora, but it was of little use.
What was I looking for anyway? A reprieve? A different prognosis? An academic paper in the ghettos of the internet that would tell me the doctor was wrong, that Jack had a chance, that my beautiful boy would live?
Can anyone help us?
by Rob» Thu Nov 6, 2014 9:20 pm
Hello, everyone, I posted on Hope’s Place a few months ago, after our five-year-old son was diagnosed with PXA. He subsequently had a resection and was doing well. We have just received the devastating news that his tumor has come back and is now glioblastoma multiforme.
We met with his neurosurgeon today and she said that a cure is out of the question and all they can do is give Jack palliative chemotherapy. We asked the doctor how long Jack has left and she said probably a year at the most.
We just don’t understand what is happening. Jack still seems in such good health. Are there really no other options?
The doctor said there was possibly a clinical trial and is looking into that. (We’re based in the UK but can go anywhere.) Does anyone know about anything else on the horizon for glioblastoma multiforme? Or does anyone have any experience with new or even alternative treatments?
Any information would be very much appreciated. We are devastated and desperate and just don’t know what to do.
Rob
I looked around on my desk and found Jack’s imaging report and started to search some of the medical terminology on the forum. An old thread from 2012 came up about a clinical trial and, as I read down the page, I felt a flush of excitement, exhilaration. It was a wonder drug, vaunted in the press, for children who had exhausted all o
ther options.
I clicked on a user profile of someone whose son had taken part in the trial. Her last visit to the forum was 2012. Her signature at the end of each post read:
Clinical trial Oct ’12, Damon joined the angels 23/12/2012
I clicked on a few more profiles. None of the posters on the thread had visited the forum since late 2012. Their children were all gone.
14
There was a moment when I woke. A second, a millisecond, or perhaps less. In that fuggy world between worlds, it was just another morning, of sunshine and school, of late breakfasts and happy squabbles. And then I remembered and I wished I could go back, to wake once again, because even that miniscule fraction of a second, that half breath, that flicker of the eye, felt like paradise.
Anna was still asleep, her breathing deep and regular, so I reached for my phone and opened Hope’s Place.
Re: Can anyone help us?
by SRCcaregiver» Fri Nov 7, 2014 1:20 am
Hello Rob so sorry to hear about your situation. My daughter had a similar diagnosis and it hit her very hard. Hers spread so quickly that hospice was the only response in the end. Cancer is a terrible disease ill be praying for you...
Re: Can anyone help us?
by Camilla» Fri Nov 7, 2014 1:58 am
I am very sorry to hear about Jack’s diagnosis. You are very welcome here and will find lots of support. We never know when or where the finish line is, so please just love the journey.
Re: Can anyone help us?
by LightAboveUs» Fri Nov 7, 2014 7:30 am
Holding you in prayers Rob. You might not like to hear this right now but you have to focus on the time you have left. Cancer really can be a gift. It has allowed me to appreciate what is important in life and taught my family how to live. My daughter lived for much longer than anyone thought possible and she made the most of her time. I will be praying for you on your journey. Much love.
Was that it? The consensus? That we were to enjoy the time that we had left with Jack? That we were to celebrate every sunrise, every dew-dappled morning? Because Jack was a “survivor” now, on a “journey.” Oh, how I had already come to hate those words.