In sickness and in health: my family’s story

In my parent’s house there’s a photo of the four of us on vacation in Mexico in December 2003. Little did we know then that it would be a stark reminder of “the before time.”

At the ages of 9 to 11, most kids’ chief concern is whether to have their birthday party at the roller rink or movie theatre. When I was that age, my chief concern was whether my mom or my dad would survive their respective critical illnesses. This is our story, as written from the perspective of my childhood recollections.

Indeed, the early 2000s brought a one-two punch to my family — first in the form of my mom’s diagnosis of a rare and aggressive type of breast cancer in June 2004; then while she was still undergoing treatment the next year, my dad was diagnosed with Budd Chiari Syndrome — a rare blood-clotting liver disease that had destroyed 75% of his liver when it was finally discovered.

Being that young (and my brother even younger), we didn’t fully grasp what was happening at first. I remember being in the car with my mom when she got the diagnosis, and when we asked what “mom has cancer” meant, she said it meant we were getting cable. To us, that was a thrilling prospect, not understanding that we were getting cable because my mom was going to be at home recovering from a litany of invasive and painful medical treatments and surgery.

Thankfully, cancer took my mom’s breasts, but not her life. I think us kids were pretty shielded from the grim possibility that it could turn the other way at just about any moment. One time I was sitting on the school bus, lost in thought, when a kid in my class asked me what I was thinking about. “My mom,” I answered. “Oh, are you worried she’s gonna die?” the kid replied. My tiny 9-year-old mind was simply floored by the concept, let alone the trademark brashness of small children.

Reckoning with the mortality of our parents far earlier than most caused me and my brother to grow up quickly. It wasn’t until my niece reached the age that I was when my parents started getting sick when I realized just how young I was. We were babies. Just babies, running our hands back and forth on my mom’s peach fuzz hair as it grew back after chemo, carefully avoiding the port and double mastectomy scars on her chest when we hugged her. That was our normal, and it absolutely should not have been.

When my mom got sick, it felt like for the most part things were dealt with quickly and discreetly with little in the way of dramatics. In fact, we have very few photos documenting that era of our lives. Then came my dad’s illness, which by comparison seemed to befall him and our family like a tonne of bricks.

My dad, then only 42, used to be the “Family Food-Finisher” with an apparently iron gullet that would happily take on my or my brother’s leftovers. When he suddenly couldn’t process food as easily, that was one of the first signs that something was wrong. Then there was the ascites. Fluid buildup from my dad’s liver deteriorating caused his belly to swell up into a solid mass. With the jaundice, he looked like a heavily-pregnant Lego figurine.

Budd Chiari Syndrome is so rare it’s literally one in a million, and the only course of treatment is a liver transplant. My dad was sent to the U of A hospital in Edmonton to take advantage of its renowned transplant unit, and my mom followed suit, while still undergoing the last of her cancer treatments. So as to not upheave our lives further, my brother and I stayed in Calgary with our maternal Gramma.

Sometimes I wonder what life would have been like had I gone to school in Edmonton instead. In addition to my parents’ situation, I was also severely bullied then. Going from a small elementary school where all the staff and most of the students knew our family and wanted to help, to a big junior high where the majority didn’t know us and didn’t care (and some would even be so uncouth as to tell me this), was extremely jarring. I was, as one would expect, extremely depressed and overall emotionally vulnerable (I would be diagnosed with severe depression much later in life at 25, but I truly believe this is where it started). I had very little support from even the teachers.

Despite this, one of the many things that stuck out to me then, and especially now looking back, is how much our extended family stepped up to the plate. Second and third cousins on my mom’s side who I didn’t even know about were appearing out of nowhere to give my mom a place to stay in Edmonton, to take me and my brother out for a distracting day of fun on the lake, or just to drop off about half a dozen boxes of sugary cereal (a real treat for us kids back then as my parents were bordering on the “crunchy” side of healthy even before all this). Some were even offering up their livers, as it’s one of the few organs that can be transplanted from a living donor.

However, my dad was so sick that he needed a full liver, which could only come from a cadaver. To further complicate matters, my dad had an uncommon blood type. Over the 10 months he spent at the U of A hospital (a record-breaking six months in the ICU), my dad actually received two transplants. The first was not an exact match, acting more as a “placeholder liver” to keep my dad going long enough until a compatible organ became available. Three days later, his body passed a blood clot into the new liver and destroyed a portion of it.

It was another few months until my dad got the liver that’s still in him today. In October 2021 it’ll be 15 years. We consider ourselves extremely lucky, as an average of 1 in 20 people die on transplant waiting lists in Canada; beating the odds once again.

You’d almost not know it from looking at my parents today that they were both so close to death. My dad was reduced to a bag of bones, barely lucid in his hospital bed surrounded by cacophonous machines. I can still conjure that image today, almost a decade and a half later. Our family wouldn’t be where we are today without the medical staff who helped us get there — especially the nurses. Whenever I meet a nurse, regardless of whether they worked alongside my parents or not, I tell them how grateful I am for who they are and what they do.

There was a time when we didn’t know if my parents would be around to see me finish school. In November 2019, they were there for my wedding, doing all the Parent of the Bride things. That wouldn’t be possible if the person whose liver was donated all those years ago hadn’t registered, or if my mom’s cancer treatments hadn’t worked.

So please, if there’s anything you can take away from my story today, it’s to become a registered organ donor, because it can, and will, save lives.