By Mark Nassutti
Someone has to tell him. Right? Someone?
It’s early October, 2001. My son Andrew, 16, has been fighting brain cancer for more than two years.
The cancer has won.
I’m walking away from a tearful conversation with Andrew’s high school homeroom class. At Andrew’s request, I’ve invited them for a visit. But now I have a problem.
At yesterday’s medical conference, the doctors said what amounts to “there’s nothing else we can do.” Andrew wasn’t in the room. I’m not sure how it happened that way, because he was almost always in the room, but this particular day he was down the hall channel surfing in the teen rec room at Seattle Children’s Hospital.
As we walk away from that homeroom, Bev, my hospice case manager, wonders aloud. “Does Andrew know as much, in concrete terms, about his situation as his friends do now?”
I have to consciously restart my breathing.
“He never got briefed after the last MRI,” she says, “and the decision to stop treatments. We agreed Dr. Russell would tell him, but he got called away. They never connected.”
I came to this homeroom meeting assuming he’d been told.
She doesn’t have to say it out loud. I already know who it will be, but I don’t like the idea. I’m scheduled to pick him up this afternoon from his mother’s house and have him for the weekend. The class will visit Sunday.
I know that if I ask Dr. Russell to do it, he’ll just tell me it should come from a parent.
I know Andrew’s mother can’t do it.
But if I do it, she’ll hate me for it. We’ve been divorced seven years, pretty amicable until Andrew was diagnosed. Then, she pretty much shut down. She refuses to speak to me. In medical meetings, she seems as impatient to get out as Andrew is. Information about new meds, a seizure or an ER visit doesn’t get passed along to me. Our parenting plan means I sometimes have to endure up to 12 days without seeing Andrew. I’m constantly blind-sided. And on top of that, Andrew and my daughter Claire both tell me I’m constantly getting dissed by their mother and her new husband, no matter what I do.
I admit, I’m no angel. I’ve done my share of stupid things that made matters worse. But even if none of those things had happened, telling Andrew would be like throwing gasoline on a fire.
But he has to know. Until yesterday, he’d seen every MRI and discussed every treatment, the potential benefits, the risks, the side effects. He’d been the decision-maker.
Until now, there’s always been something else to try.
He has to know. He has to have time to get ready. I swore 18 months ago that if he had to die, he would not die in ignorance, he would not die in fear.
It is that commitment, to him, for his sake, no matter what happens to me, that drives my decision.
I must tell him. Tonight.
At dinnertime, it’s just the two of us at my rough-hewn Mexican table. The house is silent. He’s rolled up in his wheelchair. I sit next to him. As I help him eat, he’s lucid and wide awake despite the potpourri of meds that manage his symptoms but sometimes rob him of speech. Conversation flows. Inside, I feel hollow but calm.
Now.
“Andrew. Has anyone told you the results of your last MRI?”
“No.” He locks his eyes on mine and won’t let go.
“Do you want to know the results?”
“Yes.”
“It’s not good.” I take his hand. “There’s new tumor growth, in other parts of your brain.” His eyes tell me to go on. “The doctors can’t get at it with surgery, and the chemo appears to have stopped working.” I take a long breath. “I know, it seemed to help for a little while, but not anymore.”
“So I’m fucked.” Dry, straight to the point, no sign of emotion, just a hint of anger, his eyes still locked onto mine.
I look down, and shake my head, feeling stupid and awkward and shaky as I say the words “Yeah, I’m afraid so, Andrew.” What else am I supposed to say? Yes? You’re fucked? How else do you say it? But I’ve said it. I meet his eyes again, search for something else to say, something that will make it easier for him. Something that will break this increasingly awful silence. I resort to more facts.
“In the meeting, Dr. Russell tells us there’s nothing more they can do. We’re out of options. He said even if there was something, we probably couldn’t get you into the trial because they have certain requirements that you don’t meet anymore.”
“So I’m fucked.”
I shake my head again over the word that I must say. “Yeah.” I take a couple of slow, shallow breaths. “Do you have any questions, or anything you want to say?”
“No.”
“Okay.” More silence. I remember something Bev had said was often helpful in this situation. “You should know that we asked, well, when it happens, how will it happen. He told us. Would you like to know that?”
“You mean, how I’ll die?”
“Yes.” I can’t believe I’m saying this.
“When will I die?” So matter of fact.
“Nobody knows for sure. Dr. Russell said it’s very unlikely it would be less than two weeks, and it’s very unlikely it would be more than six months.”
He rests, releases my hand to scratch an itch, then takes my hand again. “Okay, how?”
I feel calm now, a bit surprised about that. “You know the tumor has already affected your mobility. You’ve seen how it’s made it tougher for you to talk. That’s happening because the tumor is putting pressure on the parts of the brain that control those functions. What’ll happen next is you’ll get sleepier and sleepier. Eventually you’ll fall into a deep sleep called a coma. Then sometime after that, the tumor will put pressure on the bottom of the brain, the part that controls breathing. Your breathing will get more erratic, and then one day you’ll just stop breathing.”
“Will it hurt?”
“You won’t feel any pain.”
“How long?”
“I don’t know, Andrew.” After a moment, I ask again, “Do you have any questions? Anything you want to say?”
“No.” His eyes still hold mine.
“Are you scared?”
“Yeah.”
The silence feels unbearable. I have to say something. “Of what?”
He gives me that look that he always gives me when he’s about to say “you are such a dork.”
“Of dying.”
“What do you think it’s going to be like?”
“Scary.” The look.
I feel like I’m in a fog. “Do you think you’ll see anything or feel anything as you go through this?”
I hear a hint of wise-guy. “Scared.”
I look away, but he still holds my hand. After another long silence, I start to talk.
“I think there are going to be people waiting for you on the other side. My grandpa Elmer. Elmer Andrew. We named you for him, remember?” He nods. I go on, and he just listens.
When I’ve run out of words, I kiss him on the forehead. I clear the table and do the dishes, he watches some TV. At bedtime, after I’ve tucked him in, I say, just as I’ve said nearly 6,000 times before, “Good night Andrew. I love you. See you in the morning.”
Saturday is a normal day of television, video games and dinner at his favorite Mexican restaurant. On Sunday morning, it’s just the two of us for breakfast. I find him looking at me with those beautiful brown eyes of his.
“Andrew, you’re looking at me as if you’re looking, searching for something.”
“Uh-huh,” with that you-are-such-a-dork tone.
“So what is it?”
“The answer.”
“The answer to what?”
“Why?”
“Why what?”
“Why am I going to die before you? This is bullshit. The father is supposed to die before the son.”
Some tears come, and I yield to them, but feel thankful that he can talk about it.
This afternoon, his friends will visit. This, too, was a controversial decision. Bev was an ambassador of sorts, visiting both households. She had told me she spent much less time there than here and pretty much was only asked to help with hygiene techniques. I’d asked her if his friends had visited there, and she said Andrew’s mother “wants his friends to remember him the way he was.” Fair enough.
But to Andrew, to probably any 16-year-old, especially a popular one like him, friends are everything. When I asked him if he’d like a visit, he lit up. I would have risked the fires of hell to see that smile again.
The homeroom bunch arrives around 3. When I see the boys, I’m shocked. Only four months have passed since I saw them last, but they have all grown. They look healthy and tan and vibrant, and the contrast hits me in the gut. The group talks with animation, about and with Andrew, and he just glows.
Andrew looks both elated and wistful when the visit ends. When I roll him out of the wheelchair van at his mother’s house that evening, a Sunday, I kiss him on the top of his head and say “I love you, Andrew.”
“I love you too.”
On Wednesday, my wife, Madelyn, gets a call from the stepdad. It’s a crazed rant about how I’ve killed Andrew, that he broke down crying that morning and when they asked him what was wrong he said, “Dad told me I’m going to die,” that this is all my fault and that if I hadn’t interfered, Andrew would be fine.
I just wish I could have been there when Andrew’s tears came.
On a Wednesday two weeks later, Madelyn and I take Andrew to his favorite Mexican restaurant again. He can no longer hold his head up, or feed himself. Between bites of honey-drenched sopapillas, he tries to say something, but we can’t understand him. He tries again and again, and I shake my head in desperation.
As I drive him back to his mother’s in the wheelchair van, I hold his hand. The electric fuzzy dice he gave me for my birthday a month ago glow red under the rearview mirror. At his mother’s driveway, I roll the wheelchair out of the van and stop. Cradling Andrew’s head in my hands, I kiss him on the forehead. “I love you, Andrew.”
“Love you too.”
“See you Monday.”
What had he been trying to tell me? More fajitas? Pass the guacamole? I think I’m done?
Two days later, Bev visits me at home. She had seen Andrew the night before at his mother’s and tells me that, based on the way he looked, spoke and breathed, he’s getting close. Hours, maybe. She asks me if he’s ready.
“Yes,” I say, “yes. He’s ready.”
This Personal Essay won “honorable mention” in two writing contests in 2011, the Writer’s Digest National Writing Contest and the Pacific Northwest Writers Association writing contest.
