FH is spending the night at the hospital with Nicholas. After our supper in the kitchen of the Ronald McDonald House, Frankie and I have just come through the door into our little suite and the phone rings.
“Please Mom! Don’t let them! Don’t let them take me!” Nicholas is sobbing.
“Here Nickie.” FH’s gentle tone is in the background. “Here, let me talk to your mother.”
His voice cracks. “Susan, you have to come now.”
Frankie and I grab up our coats. My heart is hammering inside my chest.
“Mom, what’s going on? Is Nickie..” He gulps. “Is Nick OK?”
My oldest son, all this long year, has done his best to just fit into the back ground. His Dad and I both try to keep him informed and give a modified version of what we are told by the medical staff, but it’s more than we as adults can understand.
It’s absolute heartbreak to watch him under the weight of our words, like a pack animal being over-loaded, he staggers, pain contorting his face and we worry that one more sentence will put him to his knees.
Tonight, as I drive quickly along the roads towards Alberta Children’s Hospital, the passing streetlights color gold the softest fuzz growing on Frankie’s young face. He turns 15 years old in two days.
“I don’t know Frankie. I just don’t know.”
Frankie and I go into Nick’s room. He is hysterical, begging, “Don’t let them take me!” Stick-thin, bald, sweet little boy, nine months into this losing battle with cancer and he might die tonight. His blood pressure is dangerously low. So low that the Intensive Care unit is on standby.
But this isn’t a child who will get well and go home. This is a life that is dangling by a thread. A life confined to a hospital bed. A child suffering with pain and fear. A child dying like a withered old man. Why would we prolong this agony?
When Nick’s blood pressure dipped a doctor was called. This wasn’t a doctor we knew. He came with an agenda. He came to say that he felt we should let our son die. But instead of speaking privately with FH he came into Nick’s room and said that if Nicholas went to the ICU the measures they would use to attempt to stabilize Nick would be “severe and desperate.” FH quickly pulled the doctor from the room but Nicholas these last months has been tortured, he knows how much pain hospital “measures” can cause, and he came unglued.
“It’s OK Baby.” I tell him. “Nobody is going to take you anywhere.”
“Are you sure?” These hours of hype, fear and anxiety has dredged the last speck of energy from his beaten body, and his eyelids bob up and down, too heavy to keep open.
“Yes. I swear.”
Nick’s eyes close.
I motion. FH, Frankie and I walk out and silently slide the heavy glass door shut. Nick’s bed is a shadow inside the room.
We three hug. FH is trembling. Frankie’s color is that of snow. I’m strangely empty inside. Hollow. My mouth is so dry my tongue sticks to my teeth when I speak.
“Frankie, can you give your Dad and I a few minutes together and please stay here with your brother?”
He’s frightened out of his wits.
“Mom! Dad! What if he… DIES?”
There. He said it.
“Oh Sweetheart. I…” The air inside my chest burns. “Please Frankie. Your Dad needs to get out of here for a little bit. Someone has to be here if… when Nick wakes up. We won’t be long. Please.”
The nurses come into the room frequently. The sliding door is left open. Frankie, courageous like a lion, kind and trusting soul, takes his father’s chair, and his back curves, heart first, towards his little brother’s bed.
The IV pumps hiss. The monitor with its colored jagged lines records Nick’s heart rate, oxygen saturations and every fifteen minutes the soft cuff wrapped around Nick’s wasted bicep inflates. The nurse comes in and writes down the very low numbers.
FH and I walk the dark paths outside the hospital, the doors and windows throw white squares of light onto the lawns. I hold his hand and he cries like a baby. My limbs are lead and my heart is frozen.
Throughout the night family and friends that we have called trickle in to stand beside Nick’s bed. I’m absorbed by the shallow movement of his chest under the covers. He doesn’t stir. He’s lost somewhere unfathomable, maybe near the threshold between here and there, touching an ethereal doorknob, a foot poised.
Frankie turns 15 in two days. I pray Nicholas does not die on his brother’s birthday.
September 21, 1999