Chapter Twenty One

The remission didn’t come.

After a procedure as drastic as a bone marrow transplant, this was very bad news.

It was decided I would take part in a clinical trial.

The hospital was in Little Rock, Arkansas. I had to spend six weeks there, being treated with a souped-up new chemo called RZ800, while a control group of kids continued to be treated with normal medical strategies.

I couldn’t fly in a regular airplane because of my immune problems, so my parents had to hire a private jet to take me there. From the airport an ambulance took me to the hospital. My parents stayed in a motel that catered to relatives of cancer patients.

One good thing about the trial, there were kids in it from all over the world. German kids, Dutch kids, French kids, kids from Norway and Sweden and even Africa. We made an odd-looking group with our different skin color, our different mannerisms. But being bald united all of us.

There was a little Swedish girl named Elin, whom I found very attractive. She still had some of her blonde hair (until the treatment started), and she had a delicate little body, almost like a doll.

She spoke perfect English. When she found out I couldn’t talk, she did the talking for both of us.

“It’s not so nice here, is it, Max? I don’t like being in this place. I wish I was home where it isn’t so hot. Where do you live, Max?”

There was a map on the wall, and I pointed out where we lived.

“What’s it like there, Max? Do you have lots of snow?”

I pointed to the calendar on the wall and showed her the months when we had snow.

“We have lots more than you,” she said, pointing to about nine months of the year. “I love snow.”

I managed to ask her what kind of sports she liked.

“Ice skating, hockey, skiing,” she said. “I like skiing most. All the way from the top of the hill down to the bottom! It’s fun!”

She was so cute and so friendly that my mutism was driving me crazy. I really wanted to talk to her.

“Have you been in other hospitals, Max?”

I held up two fingers.

“Did you make friends there?”

I nodded. I held up four fingers.

“Are they alive?”

I shook my head.

“I understand,” Elin said. “I’ve had five friends die of leukemia. It kind of makes you feel like a survivor in a concentration camp, doesn’t it?”

I nodded. I liked her metaphor, because it suggested we were being unjustly sequestered and punished.

“Who was your best friend?” she asked.


“Who is Bart? she asked. “Tell me about Bart.”

I told her what I could. My eyes filled with tears as I thought about Bart.

“Is Bart alive?” Elin asked.

I shook my head. My expression must have told her how big a loss Bart was to me.

“Yes, Max,” she said. “One of my friends was very close, and she died. I hate this disease.” She frowned. “I don’t think I am going to survive, Max,” she said. “I wouldn’t be in this clinical trial if I were going to live.”

I held her hands. My eyes told her everything I was thinking.

“Yes,” she smiled. “Life is full of surprises after all, isn’t it, Max?”

I felt something like love for her. She was so fragile, so pretty, and so completely without illusions. I had never met anyone quite like her.

The chemo they gave us was horrendous. It was almost as bad as the transplant. We couldn’t move from our beds. We had to use bedpans to go to the bathroom. We lay flat on our backs for weeks.

My parents would come in to see me, and I saw the shock in their faces despite their surgical masks. I must have looked like a cadaver.

I overheard one of the nurses saying, “The patients aren’t dead, but they wish they were.”

In fact, several of us died during the trial. The damage to our bodies from the leukemia and the various drugs had weakened us to the point that the RZ800 simply killed us.

But somehow, after six weeks, I was alive, and I went back home.

I had Elin’s address and promised to write to her. She was in terrible shape by the end of the trial, but she kissed me goodbye.

“Write to me,” she asked.

I picked up the pad by her bed and wrote, I’m writing to you already.

She nodded. Her eyes said it all. She didn’t expect to live, she didn’t expect me to live, but she was pretending we would be together again.

I knew that look well.