After the initial consultation, my sister would be given a combination of three different drugs that had proven to be the most successful in treating the types of tumors afflicting my sister.
Yet the odds weren’t good. Chemotherapy is essentially poison; the hope is that the poison kills the tumors before it kills the person. While it’s effective in many types of cancer, it’s far less effective in the brain. The blood-brain barrier—think of it as a wall between your brain and the rest of your body—makes reaching the high concentrations necessary to kill the tumors almost impossible to attain. They could, however, sometimes control the growth rate of the tumors or, if lucky, even stop the growth entirely.
“So what does that mean for Dana?” I asked Micah on the phone.
“They won’t know anything until after she’s on the drugs.”
“But she has a chance, right?”
“Yeah, there’s a chance, but . . .” Micah trailed off.
“But the odds aren’t good,” I finished.
“They wouldn’t say. All they would tell me is that the regimen she’s going on offers the best chance for her.”
“What happens if the tumor stops growing, but doesn’t actually die?”
“I don’t know.”
“Could they tell you how long the tumor might stop growing if the drug works?”
“No,” he said. “To be honest, Nick, I didn’t get any answers at all. Not because she doesn’t have good doctors, but because they can’t even begin to make an educated guess right now. I’ve told you all that I know. They say they’ll probably know more in three months when Dana gets her next CAT scan.”
“What are we supposed to do until then?”
“Wait and see what happens.”
“That’s what they told you?”
“In those words exactly.”
After that, our life began to fall into a distinct three-month cycle, almost like a holding pattern. Dana started chemotherapy with Micah by her side. As the poison began to filter into her system, my brother held her hand.
The news about Dana made everything that much harder. Writing was a struggle the first couple of months of the year, and my book tour for Message in a Bottle lasted throughout March and April, again stranding Cat alone with the kids. While on the road and away from home, I worried about my sister’s health, and hated the fact that I wasn’t able to work with Ryan.
I continued to write when I returned; in the end, I nearly completed a novel before throwing it out in its entirety. It simply wasn’t working.
As soon as I got back, I started on Ryan’s speech again, facing one struggle after the next. By then, specialists had revised the diagnosis once more—this time to CAPD, or central auditory processing disorder. Essentially, it’s dyslexia of sound; for whatever reason, sounds are jumbled into something like random noise, making speech and comprehension extremely difficult. By then, neither Cat nor I cared what the experts said was wrong with Ryan; we simply continued to work with him.
After a year, he’d finally reached the point where he understood that words represented objects, and Ryan could repeat nearly everything I suggested. Questions were a massive stumbling block. He couldn’t comprehend the idea behind statements beginning with what, who, when, why, or how. For weeks, I spent hours trying different ways to get through to him.
I’d point to a picture of a tree.
“Tree,” I’d say.
“Tree,” he’d repeat.
“Good! Great job!” I’d praise. I’d point to the tree again.
“What’s this?”
“What’s this?” he’d repeat.
“No, no. It’s a tree.”
“No, no. It’s a tree,” he’d repeat.
Meanwhile, the clock continued to tick. On his next birthday, he’d be five years old.
In April, while I was on tour, Dana went in for her next CAT scan, and she called me on the road with the news right after she’d received the results.
“The tumor has shrunk by half!” she said.
“That’s fantastic!” I said.
“Oh, man, was I worried. I was a nervous wreck the last week and a half.”
“I’ll bet you were. I was, too. But this is great news.”
“If it keeps working like this, it might be gone by the next time I go in.”
“Did the doctors say that?”
“No, but I think it will. It’s already down by half. More than half, actually.”
“That’s wonderful,” I said again.
“I’m going to beat this thing.”
“I know you will.”
By May 1998, after hundreds and hundreds of hours, I finally stumbled onto something that helped Ryan understand what a question was. I began to whisper the question, and shout the answer before he could repeat the question.
“What’s this?” I’d whisper, pointing to the tree. “TREE!!!!!!” I’d quickly shout.
Ryan, startled by my outburst, would say “Tree!” almost on instinct.
“That’s right!” I’d cheer. “Great job! It’s a tree.”
Gradually, he learned how to respond to some questions; what and who, primarily, both major steps forward, which allowed him to finally engage in basic conversation. To learn where would take many more weeks. When, why, or how still eluded him completely. Nor could he ride a bike. Nor could he write with a pencil. Nor could he tie his shoes. Cat worked with him in all those areas, and she showed no less determination than I. She, like I, was determined to help Ryan get better, no matter what it took. Both of us wanted Ryan to be mainstreamed when he started school; we wanted him to attend regular classes with regular kids. We wanted Ryan to be accepted as normal.
But often it felt as if we were running out of time. In a little over a year, Ryan would be starting kindergarten. And the clock continued to tick.
At the end of May 1998, Cat and I spent a couple of weeks in California, visiting with both Micah and Dana. I served as best man in Micah’s wedding, a beautiful event, attended by friends and family. A few days after he returned from his honeymoon, he took my sister in for her next appointment.
“I’m sure it’s better,” Dana told him on the way in, “I feel great.”
But it wasn’t. Instead, the tumor had grown again. Now it was the size of three grapes, with tentacles spreading out from it.
Dana’s chemotherapy regimen was changed, but we all knew that the new drugs were generally not as effective as the first. Still, there was hope; in one clinical study, one patient out of twelve had been completely cured with the drugs she was now on. We still had reason to hope, the doctors assured us.
To be on the safe side, however, Micah and Dana, along with a couple of relatives, flew to MD Anderson in Houston, one of the most renowned cancer centers in the country, for a second opinion. The doctors concluded that she was receiving the highest standard of care, and that had Dana been a patient there, they would be doing nothing different.
When talking to us, Dana remained optimistic.
“I’m going to beat it,” she would say.
“I know you are,” both Micah and I would reassure her.
Afterward, Micah and I would say the same things to each other. Still, we spoke to each other less frequently that year than we had in the past; one or two calls a week, not the three or four calls that had once been normal. Cat and I continued working with Ryan; Micah was adjusting to married life and working hard; he’d also begun remodeling his home and was spending as much time with Dana as he could.
The phone calls were often painful. Talking to Micah reminded me of Dana, and vice versa. And even though I’d talk to Dana as frequently as I did with my brother, I could never escape the image of something terrible growing inside her, something irreversible.
That summer, drawing inspiration from my sister, I wrote A Walk to Remember. Jamie, the main character, embodied all the wonderful attributes of my sister, and all the worries I had for her future. It was the first time I’d ever cried while writing.
In the end, I dedicated it in memory of my parents, and to Micah and Dana.
My sister, though she knew it was about her, refused to read it.
“I don’t want to know how it ends,” she said.
By autumn, my sister’s tumor had shrunk. Not much, but progress nonetheless. She stayed on the same drug regimen, and we bided our time until winter, when she would get another CAT scan. We continued to live from one three-month cycle to the next.
In early December, Micah and Dana, along with Bob, Christine, and the kids, flew to North Carolina to visit. While there, we all dressed in khakis and long-sleeved white shirts, and sat for a family photograph taken on the beach. It still hangs in my living room today, and no matter how long you stare at it, by their appearance, you would never know that anything was wrong with Dana or Ryan at all.
A few weeks later, my sister called me on my birthday and sang to me. By then, I couldn’t help but notice that she had begun to slur words occasionally, and was beginning to have difficulty understanding some things. Still, she remained positive about her condition. But a couple of days after that, she got the results from her next CAT scan.
The second round of chemotherapy was failing. Her tumor was now the size of four grapes, and the tentacles continued to spread. She was placed on a new regimen, with new chemotherapy drugs.
“This is the last of the best,” we were informed. “After this, everything we can try is pretty much experimental.”
There was still hope, however. By then, hope was becoming the only thing we could cling to.
In February 1999, Micah and Dana, along with their spouses, flew to Los Angeles for the movie premiere of Message in a Bottle. That afternoon, before we attended the red-carpet premiere, however, we brought my sister to Cedars-Sinai Medical Center. There, we’d made arrangements for my sister to see Dr. Keith Black, one of the finest neurosurgeons in the country. We wanted to make certain that surgery wasn’t an option, anywhere, by anyone, even if it entailed serious risks. While we all hoped that this latest round of chemotherapy would work, we wanted to keep every conceivable option open.
Micah, Dana, and I, along with a few relatives, were in the room when my sister’s CAT scan was placed against the light. It was the first time I’d seen one of her scans, and Micah whispered that her tumor was easy to spot. Cancer shows up white on the scan, he explained.
When the light was turned on and I saw my sister’s scan, my throat constricted. White seemed to be everywhere.
Still, we asked about surgery, and were told that since the tumor had crossed the midline in her brain, surgery wasn’t an option. When we asked about her chemotherapy, we were told that there was a slim possibility that it could slow the growth in a case like hers.
Slow, not stop. The doctor, in his own quiet way, was telling us that it was only a matter of time.
“But they’re doing everything for her that we would do here.”
When we asked about experimental drugs, the doctor explained that they were experimental for a reason. Efficacy hadn’t been proven. He spent a lot of time talking about quality of life; again, it was his way of telling us that my sister’s chances were not good.
By then, the tumor had begun to take its toll on my sister. Though fine in ordinary conversation, she was no longer able to fully understand the details of the doctor’s explanation, and she frowned at him, missing the nuances entirely.
“You’re doing well,” the doctor said to her. “Actually, I’m amazed at how well you’re doing.”
Again, we understood that he was describing her condition in relative terms; most people with a tumor like my sister’s wouldn’t be walking or talking at all. Toward the end of the consultation, Micah was sitting in the corner, head bowed low. As soon as the doctor left, none of us could say anything. Instead, we sat in silence for a long moment. My sister finally looked at Micah.
“What was he telling us?” Dana asked Micah.
Micah looked from Dana to me, then back to our sister again. He forced a smile.
“He says that you’re taking the right medicine,” Micah answered softly. “They wouldn’t be doing anything different.”
She nodded. “And I can’t have surgery or radiation again?”
“No,” he said. “They don’t think it would help.”
She blinked and looked from me to Micah. “But there’s still more medicine they can give me, right? If the ones I’m on stop working?”
“Yeah,” Micah said. “There are a couple more things they can try.”
“Well . . . good,” she said.
A couple of hours later, we were surrounded by movie stars. Dana had her picture taken with Kevin Costner and Robin Wright Penn, who were both extremely gracious to my sister. But as Dana posed for the pictures, all I could do was stare at her, wondering how much time she still had.
As if to escape the inevitability of what was happening, I began writing The Rescue in the spring of 1999. The story, about a boy named Kyle who couldn’t talk, was deeply personal and emotional for me to write; it was inspired, of course, by Ryan, our fears for his future, and the work that Cat and I had been doing with him.
In my spare moments, I spent time with Miles and Cat, while continuing to work with Ryan. Cat had come a long way in teaching Ryan a myriad of skills, and he’d continued to improve at asking and answering questions. Still, I found myself wishing that it would be easier. I wanted nothing more than for something to suddenly click, for Ryan to start learning on his own, simply by absorbing the world around him, as other children did. But nothing ever clicked; working with him was akin to rolling boulders up a never-ending hill. It was incredibly frustrating. I wondered why I’d been given a child with so many problems; there were frequent moments when I was angry at God, angry at what had happened, angry at the lot I’d been given. With Ryan, Cat and I had been robbed of all the joys of childhood; his wonder as he discovered the world, natural affection, his ability to learn on his own. Everything about his childhood was a struggle without reward, and I railed at the unfairness of it all. I wanted someone else to do the work, I wanted someone to come in and magically solve the problem, I dreamed of the day that someone would invent a pill to make his problem go away. I was so tired by then; tired of it all, and I’d pray to God, begging him to make my son better. It wasn’t too much to ask, was it? I just wanted what our friends had, what our neighbors had, what everyone else seemed to have. I wanted a child like other children.