Head in my Hands

Sometimes You Gotta Do This One Breath at A Time...

A Good Day

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Yesterday’s blood counts were:

WBC (white blood count) 0.3

AGC (absolute granulocyte count) 287

Today they are:

WBC (white blood count) 0.6

AGC (absolute granulocyte) count 500

His bone marrow is recovering, making new blood cells and there are no cancer cells.

My dry mouth droops open towards the paper in my hand.

“Is it good Mom?” He’s just put on his shoes. Even his feet have lost weight, I didn’t know that was possible. Skinny long feet dangle, pointing down to the floor, his shoes are close to slipping off his feet. Muellers, our friends from Olds, are coming to pick us up for a drive.

“It’s good baby.” I smile.

A Good Dog on a good Day

A Good Dog on a Good Day

Frankie and his dad called from home last night. The horses have been moved off our property for the winter. Miss Daisy Dog has been with Carol and she wants Sam our silly black lab/ malamute (Sam I Am with the yellow eyes) to stay with her as well. He’s such a mild and good boy. He allows a bike helmet on his head for a photograph with many wags of his tail. He never wanders. He has a heated water dish and a brand new bed for his dog house. He can stay at home, look after the place and keep Richard the cat company. People will randomly drop in, passing through to Nelson or back, they check up on our place.

The autumn weather in Calgary is all gold and red laced sunshine, warm through the glass of the truck. Inside his windowless hospital room is another world on a monotone planet that doesn’t have night or day, or seasons. Muellers make small talk, or we sit in comfortable silence. Nicholas looks out his window.

We drive around Calgary; past the Saddle Dome and Spruce Meadows. It’s getting near time to have something to eat. Larry tells Nick if he sees something he wants we’ll stop, but we can take it back to the Ronald McDonald House. People stare at Nick, with sympathy or curiosity or a mixture of both. It really bothers him. Nick sees a Taco Bell so Donna and I go inside and buy supper for us all.

We bring it back to the truck. Nick takes one whiff and heaves a minute amount of what looks like tap water onto the pavement in the parking lot. He didn’t want to eat. He just wanted to please us. Larry drives to the hospital with the bag of food in the box of the truck so Nick can’t smell it.

The covers tucked around his chin, I kiss him on the forehead.

“It was a good day, Mom,” Nick says. Then he falls asleep with his empty tummy.

Monday, October 4, 1999

Morphine & Bum Bones

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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.Tig and Eyore

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.

Nicholas in a Bucket

Nicholas in a Bucket

Fly Little Friends

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Frankie and his Dad have left for some time at home. They took a dog pillow for our dear mutt Sam, to ease his old body as the weather cools off and winter sets in.

When I’m smoking outside the hospital or the House I often run into Michelle, who I first met the night Nick’s blood pressure dropped.

My smoking sucks and Nicholas despises it. He actually snarls at me. What he says is a mixture of I hate how you smell and you’re a complete idiot for smoking when I have cancer. He called me “a stupid-o.” Both of the boys tell their dad and I what they think about the smoking, but normally (there’s that word again) I wouldn’t tolerate how Nick is speaking to me. He’s angry at the world, his mother IS an idiot and he had to come out from under the covers to tell me off.

The good (I like to think) thing about my smoking is the bonding I’ve done with other mothers who smoke. I met wonderful women at BC Children’s Hospital while we stood around appeasing our filthy habit by puffing. We shared our stories, hugs and packages of Kleenex when the dams broke and tears streamed. I go back to Nick’s room drained and feeling kind of peaceful. I’m smelling of smoke no matter that I wash my hands and brush my teeth, but he’s got a mom in a better mood and frame of mind. This might be a poor attempt at rationalizing my addiction but right now it makes sense to me.

September 1999

Someone always has a different perspective, or they just inspire you to dig deeper and keep on trucking. Michelle’s son Thomas is 13, a year older than Nick. He was diagnosed just this month. There is a tumor on his brain stem called a glioma. It was discovered when the pressure caused his left eye to begin drifting inward. This kind of cancer is unusual and aggressive with a brutal prognosis. The docs told Michelle they can’t operate. Chemo and radiation will not stop the tumor’s growth. Nick’s initial diagnosis was optimistic. Learning he had cancer was a kick in the gut. For Michelle she was knocked down and the kicking hasn’t stopped.

Thomas & sister (2)

Thomas with his little sister

Michelle brings Thomas in to visit Nick. Other than giving me hell about smoking these are the other times he’s come out from under the covers. At first the boys were sweet in their shyness with each other. Nick tells me he and Thomas would have been friends had they met at school. Just as Michelle and I need each other so do Thomas and Nicholas. I think sometimes God brings us people when we need them the most.

For these children cancer is a fierce storm. Our kids believe they have a six – foot wing span, and boldly they turn their little faces into the vortex. Bravely, faithfully, innocently, they fly for all they are worth. They never give up fighting for their piece of calm blue sky because they believe it is theirs to have.

Flying

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