Three Weeks With My Brother

Micah called me with the news as soon as he got back from the oncologist's office.

My sister's tumor, invisible only three months before, had grown to the size of a grape. While it wasn't as large as the original tumor had been--the size of an egg--it was located deeper within her brain, in an area responsible for both memory and vital motor functions. Because of that, surgery wasn't an option; there was no way to get to the tumor without causing terrible damage. My sister would be left blind and paralyzed in the best possible scenario; more likely, she would either become a vegetable or die during the operation. Nor, we learned, was radiation an option, for much the same reason. The risk was great, the possible benefits almost nonexistent. Instead my sister would be treated with chemotherapy.

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."