Chapter Louise
LOUISE
“This is going to be a very difficult conversation,” Dr. Huxler said as soon as we sat down. “There’s nothing I’m going to be able to say that’s going to make this easier.”
I just stared at him.
“The tests confirm that your sister has leukemia.” He paused. “I’m sorry.”
My whole world was exploding but, for some reason, my body just continued as if it was still there.
I found myself nodding. “Um-hum. What are our, uh...what are our treatment options?” Leukemia.
Images flashed through my head. Charity drives to take kids to Disneyland.
Bald heads and bags of chemo chemicals and throwing up.
I’d quit my job. I’d be with her every step of the way. We could fight this.
Dr. Huxler swallowed.
“We can hold it back,” he said. “Extend things. Maybe as long as six months.”
It took a while for the enormity of what he was telling me to sink in.
“No,” I said. “No. You’re not…”
He just looked sadly at me.
“No,” I said, more determinedly, this time. “No, she’s fine. This is bullshit, she’s fine! She’s just tired!”
He pressed his lips together and just waited.
“No! It’s a mistake! I want—I want more doctors. I want a second opinion!”
“We ran every test,” he said gently.
“Kids get leukemia and they get better,” I said. “They have chemo and they get better!”
“Not this type,” he said. “Nothing in medicine is certain. But in this case, the best the chemo can do is buy her time.”
When we’d first been told to go to Oncology, it had felt as if I was on the verge of falling into a void. Now, though, the void was inside me. I could feel the hole growing, eating away at me. I was getting colder and colder. “Six months?” I whispered.
He nodded.
One hundred and eighty days.
Twenty-four Wednesday movie nights.
I sat there motionless as the hole inside me grew and grew, gnawing hungrily at its edges.
“There are things I can recommend,” said Dr. Huxler. “There’s a book—”
“A book?” I whispered.
“It can help you manage the journey.”
“Journey?”
“It can help you get ready to say goodbye.”
“A book?” I asked. Then the anger came, erupting out of nowhere. “A book?!” I yelled.
Dr. Huxler just sat there and absorbed it, which somehow scared me more than anything. I’d become just another screaming, stubborn parent and all this—all of it—was normal. We were both just playing out our roles in a drama that unfolded in this office every single day.
It was already inevitable.
“We can tell her together,” said Dr. Huxler. “Or the two of you can talk first. Sometimes it’s easier that way. Whichever you prefer.”
I think that must have been when I started crying, at the thought of breaking it to Kayley. Dr. Huxler dissolved behind a haze of hot, wet tears but I didn’t move, couldn’t move. I just sat there staring at him as my face crumpled.
“You can stay here as long as you need,” said Dr. Huxler. “It’s okay.”
The first ugly, wracking sob broke the surface, the tears spilling over and falling like hot rain onto my top. I cannot deal with this.
Cannot.
Deal.
I wanted my mom and dad.
My eyes screwed shut as I thought about all the things Kayley and I had shared and all the things we now never would.
I thought of losing her, of being completely alone in the world, and then cursed myself for being so fucking selfish and thinking about myself when I should have been thinking about her.
I tried to imagine how she’d handle it: six months of watching the hours tick away, counting down the sunsets.
She’d be strong, knowing Kayley. Strong and funny, until the end. That almost made it worse.
It wasn’t fair. Not after our parents. Not her, not after so little life.
Take me, instead! I’d heard that, heard parents saying they’d change places with their kids when something like this happened, but I’d never really understood, not deep down.
I did now. I would have changed places with her in a heartbeat.
The hole inside me had swallowed everything up, now.
Every breath just brought an arctic, bone-deep cold, a nothingness where there should have been warmth and security.
I cried out of loss and out of fear: this was worse than anything I’d ever imagined, but it was nothing compared to what was to come.
My sister was going to be slowly ripped from me, one day at a time.
I finally moved. I leaned forward, buried my face in my hands, and sobbed my heart out. I cried and cried and I got colder and colder and colder.
And then I got mad.
It started as a tiny spark in the darkness, out in the middle of that void where nothing should have been able to survive. I snatched at it and it burned me, but that was fine. Pain was good. Pain was better than nothingness. I squeezed it between my palms and felt it grow.
It wasn’t fair.
It wasn’t fucking fair.
The spark had lit a fire. Fourteen years of memories of Kayley, of love, of affection...it all stood like a dense, tinder-dry forest that didn’t catch fire so much as explode. I sat upright in one sudden move and said, “No.”
“I’m sorry?” said Dr. Huxler.
“I said, no! This thing’s going to kill her and you just give up and offer me a fucking book? No! There has to be something you can do.”
There was real pain in his eyes. “I’m sorry. There isn’t.”
I stood up, the anger carrying me. “Well you find something!” I yelled. “Because I’m not going to tell a fourteen year-old girl she’s not going to make fifteen!”
I had to get out of there. My anger was red hot but I knew it would run out and I didn’t know what would happen when it did. I couldn’t go back out into the hallway because Kayley was there. So I threw open the doors onto Dr. Huxler’s little balcony.
Outside, as if to mock me, the sky was blue and the sun was pleasantly warm. Eighteen million people down there were grinning and chattering and going about their business as if this was a normal day. Kayley’s passing wouldn’t even leave a dent in their world.
I pressed my stomach against the railing at the edge of the balcony and leaned forward just a little.
We were five floors up. How long would it take, before I hit the ground?
Ten seconds, maybe? Ten seconds to think and fear, before I stopped thinking altogether.
That would be a hell of lot more manageable than six months.
But then I’d be leaving Kayley on her own to deal with this. No way.
So I stood there, hands clenching and unclenching on the railing, until Dr. Huxler came to stand next to me. I already knew what he was going to say: that my anger and denial were normal, a part of the process.
“Okay,” he said.
“Okay what?”
He didn’t look at me, just stared out over the city. “I’m not in the business of offering false hope,” he told me. “Sometimes, not every option is appropriate.”
I grabbed his arm with both hands. For the first time since he’d broken the news, I felt the hole inside me flicker. A tiny, tantalizing glimpse of a future where Kayley still existed. “What?”
“There’s an experimental treatment in Switzerland. They’ve been having good results.”
“Then let’s do it! Why are we even talking about this?”
Now he turned to look at me. “It costs half a million dollars. Kayley’s insurance won’t cover it. These people cater to the super-rich. They expect payment in advance: they won’t let you run up a bill.”
Money? It came down to money? That’s what was going to determine my sister’s future? I stood there staring at him for a moment. “How long do I have to find the money? You said you could give her six months. Could we start the Swiss treatment at the end of that time?”
He sighed. He must have thought I was crazy...but he didn’t want to give up on her any more than I did. “If I really maxed out the chemo...then in theory, yes.”
I nodded.
“Louise...I have to caution you on this. Six months was the maximum. Stretching out Kayley’s time to that.
..it’s going to make it rough on her. Treatments almost every day—she’s going to be in the hospital a lot.
It isn’t what I’d normally do. Normally I’d suggest a balance between extending her time and making her comfortable. ”
I got what he was saying. By clinging on to this one slim chance, I was ruining Kayley’s remaining time. Was I just being selfish? Wouldn’t it be better to just enjoy our time together and let her slip away, three or four or five months from now?
No. I wasn’t giving up on her.
“I’ll find the money,” I told Dr. Huxler firmly. “Give me six months.”
And then I walked straight through his office and out into the hallway. Before he could try to change my mind.
We sat Kayley down and I gently explained that it was serious. “You’re going to have to have some treatments,” I told her. “Here in the hospital. And then, in about six months, we’re going to take a trip to Europe for one last batch.”
“Europe?”
“Switzerland.”
I let it sink in. Kayley wasn’t stupid. She could see my eyes were red from crying. “But it’s going to be okay?” she asked in a small voice.
I gathered her into my arms and folded her tight against my chest. “Yes,” I said. “It’s going to be okay.”
And I prayed to whoever was listening that I was telling the truth.