My hold on Daddy’s hand tightens, and I hold back tears, waiting. I can hardly breathe.
“Mr. Warner, after looking over all your tests and consulting with a few colleagues in my field, I have come to a diagnosis,” he says.
“Okay,” Daddy says. “What’s the verdict?”
He says it with a nervous laugh, but I can feel his hand sweating against mine.
“You have a disease called Amyotrophic Lateral Sclerosis,” he says. “Also known as ALS.”
Daddy’s hand goes limp in mine, and when I turn to look at him, his lips are parted and trembling. “ALS?” he asks.
“What is that?” I ask. I know I’ve heard of ALS before, but I don’t know much about it. “What are the treatments?”
My heart is racing with fear.
“It’s a progressive neurodegenerative disease that affects the brain and spinal cord,” Dr. Walsh says. “There are some effective therapies and a new drug that has recently come on the market that can slow the progression of the disease.”
“What about a cure?” I ask. “What can we do?”
“There is no cure,” my father says solemnly.
“What?” I don’t want to hear his words. I don’t want to believe him. No cure? What does this even mean?
“Your father is right. While there have been many scientific advances in recent years, there is still no cure for ALS,” Dr. Walsh says.
“How long do I have?” Daddy asks.
Tears spring into my eyes. Wait a minute. He can’t be asking how long he has to live, right? Because that’s not something I can handle right now. I look from my father to the doctor, hardly able to see clearly through my tears.
“Most patients live between three and five years after their initial symptoms appear,” Dr. Walsh says. “But many patients go on to live full lives for five or even as many as ten years or more. Every patient’s progression is unique and difficult to predict. What we can do is start therapy right away, get you started on a drug called Rilutek that’s been proven to slow the progression of the disease in some patients.”
“Three to five years?” I ask. I shake my head. “I don’t understand. There has to be something more we can do. Studies, more tests, some kind of treatment that’s out there for this.”
“We are going to do everything we can to try to slow down the progression of the disease,” the doctor says. “I already have a team of doctors in the area working on putting together a comprehensive treatment plan.”
“That’s not good enough,” I say. “Daddy?”
He takes my hand, his face calmer than I expect. “Where do we start?” he asks. His voice is so peaceful and resolved. Almost as if he was expecting this. As if he knew. “I’m ready to start treatment as soon as possible. Let’s do what we can.”
Dr. Walsh nods and refers to the folder on his desk. “I’ve already put in a prescription for Rilutek for you, so we’ll get you started on that today. See how your body tolerates it and make sure there are no adverse side effects,” he says. “I’ve also set up some appointments with the hospital’s physical therapy department. They’ll expect to see you on Friday.”
As they discuss the plan for therapy and medication, I sit back in my chair, trying to force air into my lungs. I stare at my father, wanting to be strong for him, but not knowing how to deal with this.
ALS? I don’t know what I was expecting to hear from the doctor, but I never imagined it would turn out to be something without a cure. Sure, something he might need chemotherapy for or some other rigorous drug therapy that would take time, but this? I feel powerless. Helpless.
No cure? How can that be? How can a doctor just sit there and tell us there’s basically nothing we can do?
I don’t want to believe it, but what choice do I have?
I take my father’s hand again, and his eyes meet mine. He smiles and squeezes as he listens to the doctor’s advice, but in that moment there are only the two of us in the whole world. My father is the person who has meant the most to me in my life. He’s the one who has always been there for me, taken care of me, loved me unconditionally.
The news begins to truly sink in as I sit there, watching him take this diagnosis the way he’s taken everything in life. With