Nick goes to the outpatient clinic for blood work. The white blood count (WBC) is 1.7. He needs a unit of platelets. He will get another central venous catheter (CVC) on Thursday. The last CVC was needlessly removed. It never was infected. He was infected with the aspergillus fungus. There will be two small scars in that area of his chest. The scar from the removal of the fungal balls is a thick raised red line almost the full length of his side and around his back. His body will be a road map of this journey, and he’ll have tales to tell.
Nicholas will get another port put under his skin to receive the granulocyte colony stimulation factor (GCSF) tonight and then again tomorrow, in anticipation of the CVC. The GCSF will artificially boost his immune system to help protect him for the invasive CVC insertion.
He is afraid and cries. He had a few days to be a well-child in a normal household. I can’t believe that just yesterday we were looking at sunbeams dancing on the waves of the ocean. Today, the weight of his sickness is crushing.
The evening is beautiful. The setting sun paints pink on clouds that hover just above the horizon. The sight is just deepening the sadness. I would give my life if Nick could walk away and live his. We are quiet together, Nick laying in his bed and me sitting beside him, staring out the window at the dying sun.
Again, we visit the clinic for blood work. WBC is 4.25. The GCSF is doing its job for surgery tomorrow. Again, he needs more platelets. A hockey player for the Canucks called the House and asked if one of the kids would like to hang out and play video games. Since Nick was the only one at the House old enough and not in the hospital, he got to go. This afternoon Nick went out with Dave Scatchard, #20, a defenseman for the Canucks. When they got back Nick was bubbling about the car Dave drives. I’ve been instructed by Nicholas to write here that Dave drives a Dodge Stealth. And, I have to mention that the car is not just a Dodge Stealth, but, a twin turbo Dodge Stealth.
Everyone at the House got an autographed picture. I think Nick’s angel sent the guy because Nick really needs a boost of “Happy” right now. Nicholas will charm this young man just as he charms all of the people who cross his path. They were chatting up a storm when they got back.
Thursday July 15
The CVC insertion was successful. (Note: in 2013 the insertion is performed in a patient’s room. In 1999 it was done in an operating theater). Nicholas was a monster in the recovery room. He was rude and angry. I wonder if this is because of the morphine. It makes him sick, the same as his Dad. Nick was admitted back into the hospital for observation and a bone marrow biopsy.
Grandpa Len is in St Paul’s Hospital having a blood clot removed from a vein in his leg. He seems so sad. He is really missing my step mom.
Friday, July 16
Nick had a good night and is discharged. We could barely believe it when we were told to go home, our real home, not the Ronald McDonald House. I wish I had a picture of the smile on Nick’s face! Nicholas can’t wait for his Dad and brother to get here, so they can turn around and drive 600 km straight back.
“I don’t think so Nick, they will need a sleep and a rest.” I’m laughing. Nicholas hasn’t been home since he was diagnosed in January. His 12th birthday is in six days. It would be amazing to be home for it, but I don’t think we will be allowed to keep him away that long.
6 PM. FH and Frankie have arrived from the Kootenays. We are in the clinic, and all four of us are ushered and squeezed into a tiny examination room. Dr. Kent walks in. He tells us the recent bone marrow biopsy shows cancerous cells. The leukemia is again birthing in his bone marrow. There is no remission.
The air in the room stalls. The door is shut and I can’t breathe. I look from face to face: Nicholas, Frankie, their Dad, they look sick. I immediately need to go to the bathroom and poop. Dr. Kent says, “I’m so sorry,” and he leaves. A nurse comes in and smiles at us. I’m afraid to look at Nick’s face. Nobody has said a word. My heart breaks, for both of my children. Fear is heavy in my gut: a frozen, black shard in the pit of my stomach.
Charlotte, Al and their children bring pizza to the House. She hugs me and I cry. The timing of their visit with us tonight is uncanny. Their little Nicky is gone, but we still have ours and we are taking him home for a few days. As long as we have our child we still have hope, and we’ll run with it. I wish there was some place in this world where cancer could never find Nick.