by Luke Allnutt
“All I am asking, Anna—and I am begging you—is please come and meet Dr. Sladkovsky. He said there might be a chance to cure Jack. They’ve seen good results with other kids with glioblastoma.”
“Oh, I’m sure he did.”
“Anna, it wasn’t like that, believe me,” I said. “Really. He said many kids with glioblastoma had died under his care, as well.”
My voice cracked and I let out a sob of frustration, like the grossest injustice of childhood: not being believed when telling the truth. “He’s not some miracle worker, Anna, he just said he could give Jack a chance.”
“Well, yes, that’s what he always says.”
“What he always says? What does that even mean?”
“Rob, it’s everywhere, all over the internet. There are whole forums devoted to Sladkovsky’s clinic. Did you not read any of them, or did you just read all those glowing testimonies?”
Anna reached into her small carry-on suitcase and pulled out a folder. “Just in case you don’t believe me, I brought these for you.”
Anna handed me some printouts from a website called The Other Sladkovsky Patients. I flicked through, without really reading them. “Is this supposed to convince me? A few printouts from a lame WordPress site.”
“Are you not going to even read them? You’ll read everything on the web about Sladkovsky’s. You bombard me for weeks with all this stuff, and then I show you something that might not fit your story, and you don’t want to listen.”
I sat down on the sofa and began to read some of the patient testimonies. The website seemed familiar, and I was sure that I had come across it before. Natalia P, Peter R, Amy T—children with vaguely Germanic or Austro-Hungarian names.
Their stories started the same way, a familiar narrative, one that I’d read many times before: a devastating prognosis with all treatment options exhausted. But these children didn’t get better under Dr. Sladkovsky’s care. The tumors grew back, faster, more aggressive than before, and thousands of pounds or dollars in the red, they went home to watch their children die.
“So what?” I said, dumping the papers on the sofa. “I think I’ve seen it already. It doesn’t mean anything. Sladkovsky has repeatedly said that not everyone responds to immuno-engineering. Some do and some don’t, and he doesn’t claim to know why. He’s been completely up front about that from the beginning. God, it’s even on the liability form you have to sign. It didn’t work with these kids, I get that and I’m sorry for them, for their parents, but it does work with other kids.”
“Right. Josh.”
Anna rummaged through her bag, looking for something else.
“What’s that supposed to mean?”
“It means that I have my doubts that it worked with Josh.”
I shook my head in disbelief. “What are you...”
“Here,” Anna said, thrusting more printouts into my hand. “It’s from Hope’s Place. You probably never read this.”
Nev
by Chemoforlifer» Fri Oct 19, 2012 6:03 am
To all members of the forum:
Many of you on Hope’s Place will no doubt have seen my occasional disagreements with Nev. In light of that, I wanted to share something with you all, an email I received from a member of the forum, who wishes to remain anonymous.
Hello Chemoforlifer, I was just browsing the forum and saw something I thought was a little strange concerning one of the members, Nev. As I think you know, near the end of David’s life we went to Dr. Sladkovsky’s clinic for treatment. Since then, we have become very active in The Other Sladkovsky Patients group.
I was very surprised to see Nev’s postings about how Dr. Sladkovsky had saved his son Josh’s life. We were at the clinic at the same time as Nev and I remember Josh. When we saw him, he wasn’t doing very well at all and was very much in the end stages of his life.
I distinctly remember this because I spoke to Nev at the clinic about what would happen if his son died in Prague and how his body would be repatriated.
To be clear, we took David home when Nev and Josh were still there. So it is of course possible that Josh did recover but, from what we know about this horrible disease, that seems very unlikely.
I hope you don’t mind me writing to you but it’s been on my mind...
I have wondered about whether to air this publicly but have come to the conclusion that it’s in the best interests of the forum.
ChemoForLifer
Admin
“God, this is ridiculous. It doesn’t prove anything. It’s just forum drama. There are always intrigues, arguments between people. And this guy, some anonymous guy who’s part of this other patients’ group, so he’s got an agenda, as well. In fact, nothing about it contradicts Nev’s version. Nothing. He himself has said that Josh was very ill at Sladkovsky’s and then got better. More to the point, Anna, I’ve seen Josh. I have a video, countless photos of him on my laptop.”
Anna threw up her hands. “I knew it, this is pointless. No one can tell you anything, can they, Rob? And not that it matters, but how exactly did you pay for the treatments?”
“I put it on the credit card.”
“Great. And the rest? How were you planning on paying for those?”
“We have options, Anna. I can ask Scott. The pension plan, the savings, there’s plenty...”
“So we’ll just drain everything—everything—to finance a fraud, a cheat?” Anna snorted. “You just act like we don’t need the money.”
“Well, do we?” I said, and I shuddered, started to sob, because I knew now that Jack’s last chance was slipping away. “What do we need the money for now?”
Anna didn’t answer but walked over to the sofa and crouched down next to me. She whispered, almost hissed, to make sure there was no chance that Jack could hear.
“Do you have any idea,” she said, “how much these things cost?”
“What things?”
“Dying, Rob,” she whispered, and I could hear the soft, controlled rage in her voice. “Making Jack as comfortable as possible, however long it takes. Paying for the best private hospice with twenty-four-hour care so he can live his last days in peace. That all costs money, Rob. And that is all I care about now. Nothing else.”
We listened to the wail of a police siren outside.
“I came here for one thing,” she said, “and that’s to take Jack home. When he wakes up, I’m packing our things and taking him on the next flight back to London.”
somewhere over germany
whenever you flew Jack, you were just transfixed, your face glued to the window, and what was wonderful was how unfazed you were by the mechanics of how we got up and how we got down. you just wanted to take photos out of the window and i remember how you held the camera, gripping tightly with both hands, slowly turning it, just like daddy had shown you, making sure you got it all, the clouds, the setting sun, the endless ripples of deep dark blue.
18
It was the day before Christmas Eve, and the three of us were sitting on the sofa watching The Snowman. The living room was pristine, our tree shimmering with lights, Anna’s intricate, woven paper chains decked along the stairs and landing. There had been so many Christmas cards we didn’t have room for them, so Anna strung them up, in the porch, from wall to wall in the living room.
People made the extra effort with their cards this year. Instead of just “Merry Christmas from the Bensons!” they wished us peace and strength and said they were holding us in their hearts. There were no notes about new babies, impending marriages and Duke of Edinburgh awards.
It was Jack’s first time watching The Snowman, and I had never seen him so transfixed, his pale, gaunt face lit up by the snow-glare of the screen. As we watched, I took a small amount of pride that Jack liked the parts that I did as a child. The places where he fidgeted, where he looked across at me a
nd fiddled with his socks, were the parts near the beginning, when the snowman is trying on the clothes, putting in false teeth and climbing inside the glowing freezer. Those scenes had always left me cold, and it was heartening to see that Jack felt the same.
What seemed to captivate Jack were the moments of melancholy: the boredom and impatience that Christmas has not yet arrived; the urgency to get outside in the snow; and then, at the end, the singularly childish sense of loss that comes with the melting of the snow and that first heartbreaking sight of green grass.
It was our seventh and last Christmas. We prepared weeks in advance: the Christmas table, the gifts for Jack’s stocking, the presents under the tree. Anna had her lists, sending me out to buy napkins, the crackers, the orange juice for the Buck’s Fizz. The details weren’t accidental: the sliced brown supermarket loaf, the cheap bingo set from the toy shop, the giant tin of chocolates. She was trying to re-create, for the very last time, the Romford Christmas my dad used to do at home.
I watched Jack closely at the end of The Snowman, when the snow had melted and all that was left was the snowman’s hat and scarf on the ground. He didn’t move a muscle, lost in the blizzard of white, as the camera panned away from the little boy crouched on the ground.
“Where did the snowman go, Daddy?” Jack said later that evening when Anna and I were tucking him into bed.
I didn’t know what to say, because this was it, and I didn’t want to fluff my lines. I thought of the little pile of snow, the scarf and hat lying on the ground.
“He’s gone back to the Arctic, Jack,” I said, “to see the other snowmen.”
Jack thought about what I said and turned his head to the side.
“Is he having a party with the other snowmen?” he said, and I thought about the scene where the snowmen were dancing around the fire.
“Exactly, Jack. They’ll be having so much fun,” Anna said, dimming the light next to his head.
Jack seemed content. He stretched out and started to touch his pictures one by one: the Eiffel Tower, the Empire State Building, Taipei 101.
“Are you and Mommy sleeping in the house tonight?”
“Of course, beautiful. We sleep here every night,” I said.
Jack paused. “Why are you sleeping downstairs, Daddy? Why aren’t you sleeping in Mommy’s bed?”
Anna and I exchanged a guilty glance. “Oh, Daddy’s not sleeping so well and I don’t want to disturb Mommy,” I said, and it was only half the truth.
Jack thought about what I had said. “Even when I’m asleep, will you both be here in the house?”
“Of course we will,” Anna said. “We’ll always be here, so if you need anything, you just shout and we’ll come, okay?”
“And if I go out of the house, will you come with me?”
“Absolutely,” I said. “We’ll always be with you.”
“Even if I go to the North Pole to see Father Christmas.”
“Yes,” I said, tucking the cover under his body, making sure his legs weren’t exposed. “It would be fun going to the North Pole. Although we’d have to wrap up warm.”
“Snug as a bug in a rug,” Jack said, almost to himself.
“Snug as a bug in a rug,” I repeated.
Jack smiled and snuggled into his pillows. I thought he was dropping off to sleep, but he spoke again, his little voice clear and precise. “When we die, where do we go?”
He said it in a very matter-of-fact way, and I didn’t know if he was talking generally or if he was asking about his own fate.
Anna and I looked at each other in the dim half-light. Did Jack know that he was going to die? It was a question I asked myself a thousand times a day. Did he twig when Spider-Man came to visit or when he received the batch of handmade cards from his classmates in room 1A?
We had read the fact sheets about how to talk to your dying child. We had spoken to Dr. Flanagan and a counselor attached to the Harley Street clinic. Jack was at a difficult age, they said, on a cusp. While he would hold certain notions about death, his conceptual understanding would be primitive and undeveloped. So do what feels right, they said, as if we were deciding whether or not to co-sleep.
We just didn’t know. How could we possibly know?
“Well,” Anna said brightly, and I realized then she had prepared for the question, that she knew exactly what to say. “When we die we go to heaven.”
“What’s heaven like?” Jack said.
“Heaven,” Anna said, “is the happiest place in the world where you have all your friends and family and you can play and do whatever you want.”
Jack smiled. “Will they have PlayStation?”
“Of course,” she said cheerily. “They’ll have PlayStation and all your favorite toys and all your favorite food.”
“Will they have McDonald’s?”
Anna laughed. “They’ll definitely have McDonald’s.”
Jack grinned, but then his face turned serious. “And will you and Daddy be there, as well?”
“Of course we will,” I said, trying to follow Anna’s upbeat lead. I reached across the bed and held Anna’s hand, our bodies creating a little cocoon. “We’ll always be with you, so you’ll never be alone.”
Jack nodded solemnly.
“But remember, trouble, we’ll be watching you,” I added, softly flicking his ear and tucking the cover under him. “Making sure you do your homework, that you’re not eating too many hamburgers.”
Jack giggled. “I’m going to eat a million hamburgers.”
“A million?”
“Really,” he said, nodding proudly. He was getting tired now, his eyes beginning to flutter. “Daddy,” Jack said, sitting up again on his pillows.
“Yes, beautiful?”
“You know we talked about treats?”
“Yes.”
We had asked Jack whether there was anything special he wanted to do. His answers were always modest. No Disneyland to see Mickey Mouse; no trip to Peppa Pig World or Buckingham Palace to see the queen. No, he was adamant. He just wanted to go to McDonald’s for ice cream.
“Can we do another thing, as well?”
“We can do whatever you want, Jack, whatever you want.”
“Can we go up the London Eye again? I want to go right to the top.”
Subject: Re: Jack
Sent: Wed Dec 24, 2014 3:33 am
From: Rob
To: Nev
Dear Nev,
I wrote to you before but haven’t heard back from you, so I hope everything is okay. As I told you, we stopped treatments at Dr. Sladkovsky’s clinic, despite the visible signs of improvement Jack was making. As soon as we got back to London and Jack went back on chemo, he started declining again.
I am still trying to come to terms with everything that has happened. There is nothing left now. No hope. I wish I could say that I don’t blame Anna but part of me does. He was getting better, I could see it with my own eyes. That is a horrible thing to think about the person you love, but it is the truth.
We don’t really speak about it—Jack dying that is. We don’t speak about anything anymore. We just pretend it’s not happening. I still can’t believe it has come to this. I can’t believe I will soon lose my little boy.
I hope you and Josh are well.
Rob
Bundled up against the cold, we lifted and positioned Jack’s wheelchair at the edge of the cabin and then began our slow ascent up into the twilight. As soon as we rose above the Thames, the city lights glistening on the water, Jack took his camera out and started to take photos.
We climbed. I pointed out to Anna, because Jack already knew it all, the Hungerford Bridge and the South Bank Centre, which from above looked like a soulless cluster of gray chimneys. On the other bank, the wings of the air force memorial twinkled in the sun, guarding Whitehall and t
he Ministry of Defence. As we rose farther, we could see St. James’s, Green, and then Hyde Parks, a fat royal leg stretched out across London.
It was Scott who sorted it all out. After Jack had made his request, I called the London Eye’s bookings line. It wasn’t open on Christmas Day and the day after was already fully booked. I pleaded with the rep, explained that Jack was very ill and asked if she could pull a few strings. She checked with her supervisor, kept me on hold, but no, she was sorry, there was nothing they could do.
I called Scott. We had barely spoken, just a couple of texts, an email around the time I had gone to Prague. He was thinking of me, he said, and I should let him know if there was anything he could do.
So I did. “You know people, Scott,” I said, “all the CEOs in London you used to boast. So please help us, please help us, because we might not have much time.”
Scott called back within an hour. He had a prime slot for us—at sunset on Boxing Day and we had the cabin completely to ourselves.
“Shall we move you around so you can see the other side better?” Anna asked Jack as we climbed farther.
“Okay,” he said, not really listening, frantically taking photographs as if he was paparazzi afraid of missing his prized shot.
We moved him over to the opposite window, putting the brake on the wheelchair. Anna zipped up his coat and tucked in his scarf. We knew he didn’t have long left. His speech had started to change. He forgot things, repeated his words. He was weak and needed the wheelchair if we were going to be out for a long time. As the doctors had warned us, he had become more detached. He did everything slowly and with such caution—walking, picking up a spoon, eating a piece of toast. It was like watching someone walk through a rock pool with bare feet.
“Look, Jack, Big Ben,” Anna said, as we kept rising. We turned to look at the Houses of Parliament, lit up from below, the four faces of Big Ben hanging in the air like ghostly orbs. Jack swung himself around in the seat of his wheelchair and took more photos, zooming in and out, twisting the camera to take horizontal and vertical shots.