Connor’s Home Away from Home
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To honour client confidentiality, this composite “based-on-real-life-events” story has been written by Andrea Postal from the YANA Client Care Team including details, experiences and emotions from several of the clients who have stayed in our YANA apartments in the last year. Stock photo.
Dusk is falling on the water and I look to see Connor’s face pressed up against the window watching the dock become more than a dot in the distance as we near the familiar mainland shore. I scolded him for the dozenth time. “How many kids before you smeared their face up against the same window? Germs, Connor, you can’t have anyone else’s but your own right now”. It’s the second time this month we’ve ferried across these waters and it’s the one thing that still holds some novelty and sparks some joy on these trips for my 6-year-old son, who almost a year ago suddenly found himself with a cancer diagnosis, losing most of what knew in his comfortable little world: his bed, his room, his friends and even pestering little sister, playgrounds, movie theatres, swimming pools, his childhood in every sense it should be for a 6-year-old boy. Every day I long for normalcy in his upturned life, but I’m not even sure he remembers what normalcy is. A year is a lifetime for a 6-year-old, and it’s been a long one for all of us.
Our family received Connor’s diagnosis after months of unexplained fatigue, dizziness, and recurring fevers and infections that were given no explanation until that day that they were; it was Leukemia, the L-word, the one no parent wants to hear uttered over their child.
There isn’t a family that believes it could be them and we were no exception, but there we were sitting in our GP’s office, accepting the unfolding reality of what we found ourselves in, a life we couldn’t have imagined; our life, our world as we knew it, was suddenly changed.
In a whirlwind of tests, appointments, and imminent plans for treatment to begin, the numbers started stacking up and so did questions of how we would make this all work. Who would go? Where would we stay? Do we keep working or quit our jobs? Do we change schools, move our family? Connor’s extensive treatment plan was going to determine the next few years of our life, and our heads were spinning with the decisions we were being forced to make, and quickly.
The day after receiving Connor’s diagnosis we found ourselves packing our bags with a week’s worth of clothes, toys, and a few comforts from home. It would be just Connor and I on this trip. Jack, Connor’s dad and his sister Maeve would stay behind while we sorted out our next steps. After an uneventful trip to Vancouver, we arrived at BC Children’s Hospital for our first round of extensive testing and treatment, all within 48 hours of Connor’s diagnosis. I still remember the smell of the hospital air walking through those doors for the first time, it was the scent of illness and a complete loss of control, one that would become a familiar and bitter kind of nostalgia.
In the midst of it all, we did find a silver lining, and it would change the course of the next year for us. It was during a meeting with Anne, our appointed oncology social worker, that the suggestion of reaching out to YANA came up. We knew the name, a friend of ours was supported by YANA after their premature baby was airlifted to Vancouver a few years back. She spoke passionately about the organization and the overwhelming support that was provided during their extensive NICU stay. We had no idea how impacted we would also be by this organization and the support they would soon offer us.
It was a quick phone call to their office and a huge piece of our complicated puzzle was solved. YANA would not only be providing us with daily funds we could use to cover any one of the many expenses we would incur, they also offered to provide us with a one-bedroom apartment near the hospital, just a 20-minute walk door to door. No matter how long our treatment, no matter how many trips or how many months we would be required to be away from the Valley, we would have a home away from home.
A YANA volunteer on the ground in Vancouver met me at the hospital the next day with keys and a letter explaining the use of the apartment. I took in whatever information I could while she sweetly described details I couldn’t quite absorb. All I knew so clearly in that moment was that we were not alone, this organization and our community back home had our backs and would be a huge part of the story of how we made it through.
After more sleepless nights on a cot in Connor’s hospital room than I care to remember, we were finally given a pass to leave the hospital between treatments. Connor’s dad and sister had come across with some of our things and they were waiting for us at the apartment when we arrived that first night. Connor and I stood in the cold for a moment outside the downtown Vancouver building and took it all in. It wasn’t much of a sight, it was weathered and old and looked to have seen better days in decades past, but I could feel it was a gift and would become something like home.
We let ourselves in and climbed the stairs carefully to the second floor. Connor was more tired and weak than ever. He didn’t complain, he just moved slowly. I scooped him up in my arms at the top and carried him down the long hallway. The floors were worn, the paint was thick and chipping off the walls, and it smelled of curry and old carpet. I tapped on the door and took a deep breath, I could feel Connors own breath on my neck, his chest lifting on and off mine and his warm head on my shoulder. Jack let us in and wrapped us up in his arms, kissing us each on the head as we moved our tired bodies through the door to our new home.
The inside was nothing like the rest of the building. It was lovingly cared for with enough art and furnishings to make it feel like home. The kitchen was stocked with the dishes we would need to cook our own meals, and a dining room table and chairs to the side. The living room was set up simply with a couch, a TV, ottoman, small desk, and a lamp in one corner of the room. Jack brought over my favourite monstera plant and set it up in the corner along with a ficus and a blossoming orchid. Jack had arranged family photos on the side table, and a small rug under the coffee table and couch pillows on the couch from our family rec room. A slew of Connor’s toys and craft supplies were piled up in two bins in the living room, along with a sack of stuffed animals that would soon be a strewn arrangement across our bedroom.
The living room couch pulled out to a bed. Jack and Maeve slept on it the first couple of times they visited on the weekends, but the camping mattress provided ended up working better than the old hide-a-bed which turned out to be uncomfortable and a bit broken. Jack and I would share the two twin beds in the bedroom, which Jack insisted we push together. We covered it with the sheets provided and a colourful, king-sized quilt Jack’s mother had made for our wedding. The bed and mattress weren’t the comfort from home that I was used to, but it was enough to be close to my boy in a room of our own. It was these small pieces from our life on the other side of the water that set all of us at ease through all the newness and changes and difficult days to come.
The 10 months that followed those first days are a blur, each one tired and long with doctors and social workers, tests and treatments. The hard days outnumbered the good ones for Jack as he endured treatments and side-effects that made life anything but easy, those 10 months were a dark and difficult season I know we’d both rather forget.
But it was the small things that counted for us both. The store around the corner became our local grocer, and the deli across the street or the pizza place a block away became our usual Friday take-out. There was a park nearby that we’d walk to on Connor’s good days, we’d sit on the bench and watch the season’s change and the people come and go. We had a warm place to turn in to, with internet and cable TV to entertain us and keep us connected, and our own spot to curl up on at night. Our circumstances were hard, but our needs were met and our hearts felt so full of gratitude for all of the things that made us feel at home.
It was about mid-way through Jack’s treatment that we were cleared to go home for a little over a week to celebrate his birthday and spend some time as a family. That same week, YANA contacted us about some upgrades that had just been approved for the unit we were staying in. While the apartment had served the needs that we had, we were thrilled to learn that there would be some much-needed improvements made, like new flooring, mattresses, and some new furnishings.
The renovations were scheduled to take place during our week away, and we were blown away coming back to the changes that had been made. The old carpet was replaced with beautiful, new laminate flooring. Beyond the ease of a quick Swiffer or mop to clean the new floors, no more carpet meant that I didn’t have to clean so deeply and so often. Jack was now immune-compromised, and bare floors were much easier to sanitize and maintain the level of cleanliness that he needed.
A brand new, modern sofabed couch replaced the old one, which Jack and Maeve had opted out of sleeping on after a short few nights. We were a bit skeptical of any hide-a-bed, but the first night sleeping on this new comfy mattress and they were sold. A large desk, new office chair, and under-chair-mat were added to the living room which made for a dedicated, comfortable place Jack and I could do our remote-work between treatments and taking turns caring for Connor. In the bedroom, the old mattresses were replaced and the new ones were a welcome change for both of us. Our sleep was broken on a good night, between Jack being sick from treatment side-effects and my tossing and turning to get back to sleep on a mattress that had seen better days, the new ones made all the difference. These things may seem insignificant to some, but they made this space a more comfortable place to call home, and that meant the world to us.
Fast forward to today, and although our life is far from normal, we have come a long way.
The arrival announcement comes over the ferry speaker, I can almost recite it word for word. Peeling Jack away from the window one more time, we make our way down the vehicle deck before making our last leg to the mainland. This is our final stretch before we go into maintenance; Jack’s been allowed longer stays at home and now he’ll have shorter trips across a couple of times a month, but this should be our last stay in the home we’ve made in our Oak Street suite.
This week has been an easier week than most. Jack’s energy is coming back and we’ve been taking more walks to the park and playing Candy Land before bed every night. We’re all so ready for more time in our beds with our own things and time together as a family, but we will look back on this part of our time with hearts full. After a long day of paperwork and appointments at the end of our week, we are given the green light to pack up the apartment. Jack and Maeve come across and take a car-full of most of the things we’d brought over to make this place our home. A Swiffer and wipe down of the cupboards, surfaces and bathroom, and the place was clean and ready for another family to use. I appreciated so much the ease of how quick and easy it was to clean, it was the last thing I wanted to do after a tiring day or long week, but it had become a simple chore.
Although we’ll spend many nights still in this apartment, it’ll no longer be our home, instead, it will be a safe, warm, and clean place to lay our heads at night for these shorter treatments over the next little while. There will be other families with sick children, long days, and uncertain times coming and going from this same suite, and it will no doubt be a gift to them as it was to our family. This place has been the difference between feeling supported and feeling alone, and we most certainly know we are not alone.