Tuesday, 4 February 2014
Glow in the dark
One of the many mementos Dominic will have from his experience with cancer is something that's been building ever since he got in to the hospital, and won't be finished until he's done there.
We've just found out it's going to be a bit bigger than we thought.
It's called A Beaded Journey. For every poke, every procedure, every day he gets a visitor and every time he's faced with a new challenge, the string of beads gets longer.
There are beads to represent the seasons, so by looking at the string you can see what time of year it all began. He's got dozens of black beads which represent the pokes for bloodwork, then a special bead for when he got his broviac line and the pokes could decrease. Visits from the Calgary Flames and Stampeders have their own unique beads too - the flaming C and a football.
Last week he got one for riding in the ambulance, and in a couple weeks he'll get ones for his radiation and bone marrow transplant. The green radiation ones appropriately glow in the dark.
Originally he was just going to get four rounds of chemotherapy. Then the specialized 7-12 chromosome aberration was found and a bone marrow transplant was added to the mix. Where once the Beaded Journey fit in a drawer, now it has become an archway around the bathroom door in his hospital room. It's about eight feet long.
The radiation was to be 400 units, done over the course of two doses in one day. He'd have to be put to sleep because you have to stay still for it. The planned dose was fairly low so while there are potential side effects, they're relatively minor.
This morning our doctor said they want to do more radiation. Four times more. Concentrated on the mass of leukemia that showed up on his head and caused him to have a seizure his first week in hospital.
Now, in addition to the cancer in his blood, he's being treated as if he has a brain tumour.
I took some solace in the idea that once Dominic's treatment was over, he could look forward to living like a normal kid some day. He enjoys playing with stethoscopes, even putting them on and pretending to check his own heartbeat. Nurses and doctors routinely say that he's going to grow up to be just like them.
But this extra radiation can easily stunt his growth, delay his brain's development and set him back. He might wind up sterile and unable to have kids later in life.
I have to keep reminding myself that living with these setbacks is better than not living at all. But it's also part of the dream that's being ripped away, our dreams for him.
No child should have to go through any of this. Today is World Cancer Day, which aims to increase awareness and push for improved treatment. While Dominic is lucky to be getting the best help possible, there are still no guarantees and the side effects are going to be with him for the rest of his life.
I so wish those glow in the dark beads could shine some light on his future.