Nicholas hasn’t had chemo for weeks. The soft hair growing back has some length, sticking straight up in places. Eyelashes frame his big brown eyes. Propped up on pillows in bed, the tray pulled over his lap, he munches on a cracker. The sound of his eating, the crunching of cracker, watching bits of it tumble from his mouth, is delightful. He slurps chocolate milk from a small carton, a chocolaty ring circles his lips. Clumsily he wipes at his mouth with the back of a trembling hand, and my heart swells. I think this is what the angels in heaven must look like.
WBC (white blood count) is 0.12. Normal range is 0.45 – 1.0. He’s 25% of low normal.
Come on! Enough waiting, and waiting, and waiting! “Dear God, please help us. Lift this child up and set him on his feet.”
The CAT scan results taken after Nick’s incredible surgery show no fungus between the lung and chest wall. We’re told though, one little spore is all it takes, and without an immune system he’s infected all over again.
Dr. Derek rotated off our ward and has been in pathology. He comes for a visit and tells me how much he wishes the aspergillus (fungus) removed from Nicholas’ chest would cooperate, and begin to grow in their petri dishes in the laboratory. Then they could study it.
There is going to be a point to Nick’s suffering if the knowledge gained is of benefit to somebody else. Right?
I miss Dr. Derek when he isn’t on the ward. Already a brilliant pediatrician, he will become an exceptional pediatric oncologist. He has bottomless patience for my endless questions. We see him more often than our main oncologist.
Nicholas still gets the GCSF (Granulocyte Colony Stimulation Factor) injection once a day because it stimulates growth inside the bone marrow. Each day, blood work shows a small white count. He isn’t receiving any cells from his Dad and me, so those are his cells.
I’m thrilled, and at the same time entirely freaked out. Are we going to see cancer cells again? He was given enough chemo to almost kill him. Was it enough chemo to kill the cancer?
Sometimes, when I sit with Nick and watch him sleep, I imagine myself being small enough to climb into his veins, travel to inside his bones and beat the utter freakin’ crap out of the cancer. Wild, eh? But in those moments I feel empowered, like I could heal him with the sheer force of my will. I believe when there is so deep a love for another human being there develops a connection between two people that moves on a different plane or dimension – a place where anything is possible.
FH is back in Vancouver and it’s time that I take a break and go home to Frankie, my oldest son. It’s tough to leave because if something bad happens I’ll be 600 kilometers away from Nick. And I feel kind of selfish for going. Some of the moms here have never left their kid. I’m reminded that I have two sons and Frankie needs me too, and then I’m torn in half because my heart hurts for sweet Frankie’s suffering.
FH gets a phone to Nicholas everyday so we can talk.
“What’s Richard doing?” He’s asking me about his cat.
“He’s somewhere out in the yard, Nick. Last night he puked up half a mouse on the deck.”
Nick giggles, “He’s just bringing you a treat, Mom.”
His Dad tells me there continues to be a slow rise in his white blood cell count.
Wonderful, beautiful, early summer is here. The sun is hot on my back as I dig weeds out of flower beds, and rake the yard, enjoying the smell of warm soil. In the evenings I’m better left alone, declining offers to visit friends, and like to sit in the dark on the back deck, the air feels like black velvet on my skin.
I’ve never been more aware of the contrast between the inside of a hospital and the life we have in the Kootenays. Out the living room window, on the other side of the valley, the dark green wooded mountains rise. Two peaks side by side, the cleft between them a mix of shadow and wisps of white cloud. What an amazing place to live, comfortable inside this small house with a scene of a vast and uninhabited wilderness.
A huge weight lifts from my shoulders from not being inside that hospital, but along with that comes the eager guilt to rob me of my little happiness, because Nick isn’t here to share the joy.
The wooden screen door creaks as Frankie comes through and sits down on a chair beside me. I rumple the thick mop of sandy blonde hair on his head, and he grins at me. Damn, I wish I could be at peace just being here with him.
After having spent 73 days inside British Columbia Children’s Hospital Nicholas is discharged to the House (Ronald McDonald House). He is weak but absolutely freakin’ relieved to be away from there! He is eating enough for the professionals to think he won’t die of starvation, and has started the oral anti-fungal, Itraconozole, he will take for one year. He won’t survive another infection of aspergillosis.