Gerry, who used to be our neighbor and taught our boys to drive his backhoe is taking Frankie with him to Alberta today. Frankie will visit with my sister’s family for a much needed break. He turns 15 next month. I’ll miss my beautiful big boy who never asks for anything, instead asking what he can do for his family.
Sunday, Aug. 15
Nicholas is in clinic getting platelets. He’s swallowed by a couch with buttery cushions worn out from long days of lounging kids and adults. He doesn’t play with the Nintendo, Frankie isn’t here to cajole him into a game. Blood work reports a WBC (white blood cell count) of 0.42. When we get the paper with Nick’s blood work there are sometimes comments. Today there is a comment stating the blast count (immature blood cells formed in the marrow) has gone from rare to occasional. My heart lurches so hard I clutch the paper to my chest.
I ran into Robert Chau’s mom in the elevator a few days ago. He’s a sweet kid, a teenager Nick met in the oncology clinic, and his mom and I have hung out with a coffee a couple of times. She told me her son won’t make it, he’s going to die. My mind froze. Before Nicholas’ diagnosis, I didn’t comprehend that children died of cancer, and now I can’t imagine how it would feel to be told your child was going to die. Now, knowing all I know and having seen what I’ve seen, I’m no longer ignorant of life’s dark crimes, and the suffering people endure, I can’t bury my head in the sand.
This road for Nick is rough, but he won’t die, he is going to survive this. Then, I wonder how far we’ll push him, and if he will come out of this whole, his organs, sight and hearing intact. I think of Natalie because she may lose her leg.
I’m going to fly home for a break. FH will stay with Nick.
We pack up Nicholas’ hospital room and help him gently into the car. He’s been discharge to the House. As FH drives, I lean my head back and watch the sun through the big leafy trees that line the streets of the old neighborhood where the beautiful Ronald McDonald House is. Strange thought, but I wonder what Christmas will feel like this year.
Aug 18
My days at home have been spent in my flower beds, cleaning my little house, scratching the dogs and cat grateful to have someone home loving them, and in the evenings when the sun dips behind the mountains and it cools off, riding the horses.
Nick has been out on an extended pass to the House. On the telephone, he tells me to give the dogs and his cat Richard a hug. “Tell them I miss them and I’m coming home soon.”
Friday, Aug. 20
It’s late, in the dark I fumble for the light switch. I was gone all day and then went straight to the barn for a ride. A half moon threw a soft silver glow on the trail in the woods at the end of the road. I love the sound of the night birds calling. The light on the answering machine is blinking red. There are three messages from FH. My stomach twists at the sound of his voice. “Call me, please, call me.” He says.
re•frac•to•ry
~ medical : difficult to treat or cure, difficult to control or deal with
~ resisting control or authority : stubborn, unmanageable, obstinate
~ resistant to treatment or cure
I dial the number at the Ronald McDonald House and hold the phone receiver with hands gone wet with sweat and knees so weak I have to sit down.
FH picks up immediately. He took Nicholas to the oncology clinic for his daily blood work. Dr. Paul arrived and asked FH to join him in an exam room. We’ve met Dr. Paul twice. He’s a prominent doctor, like our Dr. Kent was, but he doesn’t have Dr. Kent’s gentle way. He has the personality of a wart hog.
FH sounds gutted, like he’s wrung of emotion. He tells me, “Dr. Paul called Nicholas’ leukemia ‘refractory.’ he told me there is nothing more they can do. It’s futile to try. We should take him home. We should consider the quality of his remaining days.”
Nicholas, 2 years old. 1989.
