Saturday, 5 October 2013

Parental guidance

It stands to reason that mom and dad remain among the most important people in the life of a child who has cancer.
But what's it like being a parent in a place far away from home for months at a time? We're starting to find that out.
Because none of these kids have particularly strong immune systems, isolation is common in the halls surrounding the central nurses station here at the oncology ward of the Alberta Children's Hospital. For the first few days we joked that Dom would forever hate anyone dressed in a yellow hazmat suit because that's pretty close to what nurses and doctors had to wear when they saw him.
That did ease up as he started to respond well to chemotherapy, and now we get to take him out of the room to enjoy things like music therapy in a special playroom. But at the start we rarely ventured out ourselves.
The one place we did go was the kitchen, where a microwave, toaster, sink and a couple communal fridges proved to be a meeting place for some extraordinary people.
I met one man - let's call him Joe - early on as I was washing dishes and labeling items to go in the fridge. His child also has AML but is older. They'd been here for a month already and knew the routines.
"We've had some dark days," he admitted. I'd say more but wish to respect his privacy. What I will say is that he's always here, always doing what he can to help his child. I can tell what he's endured from a more mature child who knows what's going on is far more challenging than what we've experienced with an 11-month-old.
The other day he asked Trish if she needed anything from the mall. It wasn't in passing either - he literally came to our room to ask.
There's a single mom who showed me to swipe a urine specimen container and fill it with dishwashing liquid so I could do the dishes in my own room. There was the dad who introduced himself and needed desperately to talk, because he'd just been told his child's cancer has spread. There were the parents who helped out at pizza night - it's clear they've had a child in the ward but I'm scared to ask what the result of their treatment was.
The parents here all have a special bond. We're all going through variations of the same thing. Even though we rarely see each other there's an unspoken understanding. So when we talk about the vagaries of the fridge (it's too full, thank goodness someone cleaned it out), there's an undertone that's unmistakable. Do I ask you about your kid? Do I really want to know how bad it is? Or do I take the chance and hope there's something positive we can share?
Some of us have blind hope. Others look away and you can tell they're sliding. Then there's the newcomers like us, almost in a daze as they try to adjust to new surroundings.
I'm so lucky I met Joe that one night in the kitchen. I told him my story, he told me his. It helped me get out of the daze.

As for Dom, the fact I just wrote that much without an update on him says all you need to know. He's started eating food again like he did before this all started. He had his last lumbar puncture of this first round of treatment and has shown few, if any negative side effects of the chemo.
Yesterday he spent four hours at his grandparents' house. Today he got in a walker and toured the hallways for a good 20 minutes. He had a bath, got his main line patched up and a nurse who hadn't cared for him in two weeks couldn't believe he was the same boy. He looks that much better.
This is only the first of four rounds however. In connecting with other parents - including a few in Medicine Hat - who have been through it, it seems as though each round can be a completely new scenario in terms of side effects and how things progress. You have to expect a roller coaster ride or else you're going to get jolted at some point along the way.

1 comment:

  1. Being a parent is the hardest job on the planet.
    You are doing such an amazing job at it.
    GO DOM GO!