2. Treatment Day 5

Today is a lot of numbers. It’s December fourth, the fourth day of opening little cardboard doors to find a toy or chocolate for a lot of kids. December doesn’t feel very festive to me but there is certainly a lot of excitement each morning here when M gets to open up a new Lego figure from his donated advent calendar. No one keeps track of the day of the month more closely than a child counting down til Christmas!

It’s also day 9. Day 9 in the hospital. Holy smokes how it is day 9… Day 9 of this new “before and after” kind of life. Day 9 of isolation in the pediatric oncology ward on the eighth floor of the stunningly beautiful Teck Acute Care Centre at BCCH.

And it’s also day 5. Day 5 of a standard 35 day phase one of treatment for leukemia. Day 5 means a rest day after having a new drug yesterday he hadn’t had before. The nurses came in with their paper gowns and special rules and our little guy was hooked up to a blue plastic line that drips life-saving drugs into a port in his chest. Unbelievable that we’re here now when we came in for a routine biopsy expecting to go home and wait ten days for results.

It’s a whirlwind of new information for me to absorb and I’m strangely grateful Merce was hospitalized twice before because we have a little familiarity with yellow gowns, the up and down buttons on hospital beds, being hooked up to lines, and taking meds around the clock. We have a funny little rhythm already just the two of us. I am used to watching him like a hawk to see if anything changes: every twitch analyzed, every sigh noted, every complaint taken seriously. It’s a constant vigilance that I don’t expect will go away any time soon.

It’s too early to have much wisdom about what to expect on this journey. My dad who has amazingly been able to stay with us so far keeps meeting others who have been walking these halls for much longer than us, and they tell him stories and bits and pieces of advice. And so much of it is still yet to come. It feels almost silly to be writing this as if I know even a tiny bit about what lies before us. I can’t even pronounce or remember all the chemo meds he’s on! And it’s challenging to get the right perspective… It’s hard to pace yourself for a marathon as long and gruelling as this: we don’t know the destination or even the route, we just know the race has started and we’re off!

So far there are lots of people — day nurses, night nurses, nurse clinicians, head oncologist, fellow and resident oncologists, neurologists, surgeons, physiotherapists, and child life specialists (these might be my favourite! They have tools to help explain cancer to kids and every toy or art supply you can imagine!). It’s a surprise each day who is going to come, when they’re going to pop in, and what the news will be. It’s like I sit facing the door and Mercer all day so I don’t miss anything. It’s slow and yet days just melt away.

There are also lines, drips, meds, bloodwork….Extra hygiene steps and new routines to protect his delicate body as it works to fight off this cancer. It feels almost shocking to say the word cancer. Somehow it feels more clinical and less terrifying to say leukemia. He still has hair but we know it won’t last for long. He has bursts of silly goofy energy and periods of resting. It’s only been 5 days of 35 but that’s 14% done the first phase! 14% closer to knowing if we continue on plan A or if we need to shift to plan B.

Back when I worked boring office jobs I would calculate exactly how much of my shift I had left. Sitting there at 3:22pm on a boring Friday afternoon, it gave me an iota of control to be able to say I was 79% done my work day. It must be something similar that helps me feel a sense of progress to be able to see a number as small as 14% and feel inspired.

There is so much powerlessness as I read paperwork that reminds me no one quite knows why some bodies replicate immature blood cells and this happens. So much helplessness and I watch my child lay there wishing I could switch spots with him. So much exhaustion as I wrestle with all the emotions clawing at me continually, but underlying it all is a surge of ragged perseverance. A single mindedness. Wouldn’t any parent feel the same? And as much as these moments are deeply painful and full of anguish— I know that the depth of the wounds allows the depth of the gratitude.

I’ve had several overlapping years of great sorrow and hardship and it’s beginning to feel frankly a little unfair! But do I also believe God is working things out for our good? Yes! Do I also now appreciate the village I truly, absolutely have? Certainly! Do I hurt and smile in the same moment? Of course! Does my heart feel like it’s going to quit yet somehow I keep going? Am I continually baffled at how much worse things can get than I ever imagined? Does my heart grow weary and bigger simultaneously? Yes, yes, and yes.

Tragedy holds up a giant mirror. Heartache is a clarifier. Suffering is a tool for empathy. Hope begets hope. I am sitting by a beside in the dark, the hum of machines around me, like so many other parents, caregivers, relatives… clutching onto hope with frantic hands. There is uncertainty and fear and a million other emotions, but for me and Mighty Mercer, the hope is the one that rises to the top.