After a blip on the blood work radar everything has gone back to negative. The chemo is not letting up on its war against cancer. And just like his cells Nick drowses, in some kind of cocoon state.

I miss him.

Mostly covered by blanket I see only a bit of his sparsely fuzzed head. When it occurs to me that he sleeps like he may never wake up grief settles heavily upon my chest.

I sit in this chair and watch the covers move up and down. There are bugs running under my skin. With effort I resist the urge to leap up. Yesterday evening I walked back to the hospital after having gone to the House for a change of clothes. It was dark in between the streetlights. Traffic was loud but I don’t care if anyone heard me screaming until my throat hurt.

Angels sent by God to guide me,

Be my light and walk beside me,

Be my guardian and protect me,

On the paths of life direct me.

Amen

Barbara Make and Trudy Griswold, The Angelspeake Storybook

 September 29 & 30

I like kindly oncologist Dr. Booth. This week he’s come in every day. He stands beside Nick’s bed, chart in hand, scratching at growth on his face that hasn’t seen a razor in a while. One of his shoe laces is undone.

“Nicholas. Nicholas. I want to talk to you.” He speaks to the lump on the bed.

“What?” (Ah, he’s awake) Nick’s voice comes from deep inside the covers.

“I’m going to give you day passes. You hear that? You can get out of this place as soon as you get out of that bed.”

He motions me to follow. We slide shut the heavy glass door.

“I don’t blame the boy for wanting to hide. This is a very frightening time for you waiting to see what comes when the blood counts recover.”

He pats my hand and turns away. It was difficult to hear him over the buzzing in my ears.

I go back inside the room. Nick looks at me, his face framed in blankets.

Later, he manages to nibble at a few nachos with warm cheese.

“How do you feel?” I ask.

“Better,” he says.

“Wanna get out of here?”

“Um, no, maybe tomorrow.”

Friday, October 1

Nicholas is furious with me. How can I tell when he’s sound asleep (I think so) under the covers? I forced him to get out of bed this morning. I took him to our room in the Ronald McDonald House and put him into a warm bath.

Oh God. He’s like a starving Holocaust prisoner with bones jutting out.

Skinny, exhausted, sick child still put up a hell of a fight. I got attitude triple the size of any attitude he’s ever given me. But it was emotion, and passion, and life.

I hear a beep. A long cord trails under his covers. He’s pushed the button for a machine hanging from his IV pole and attached to his central line. It’s a PCA (patient controlled analgesia) and it’s dosing him with morphine.

“Do you have pain?” Nurses ask when they come in to check how often he is using the machine.

“Not really,” he says.

“It makes him sleep,” I’m told.

Taking him to the Ronald McDonald House was supposed to have been a good idea. I’m thirsty for his face – eyes open and talking to me. He did some talking today.

“No. I don’t want to. You can’t make me. I’m tired of stupid people telling me what to do. Stop bugging me. Go away. Mom!”

Skinny, naked little boy, wobbly on his feet, awkwardly climbing into the tub, telling me off and holding my hand, helping him settle down on bum bones that stick out.

“Ouch,” he says.