I sit cross-legged on my living room floor. The same floor my 11-month-old son played on less than two months ago, crawling from toy to toy, laughing as his long eyelashes glinted in the winter sunshine. But now I sit here, alone, and the words I hate so much are on repeat in my head. He’s dead. My baby is dead.
“How the hell did I get here?” I ask myself. The truth is, there are multiple beginnings and false-starts to our story, but I guess the most important beginning lands us at June 12, 2019. The day of our IVF embryo transfer. After years of disappointment and multiple failed fertility procedures, this was THE ONE. The transfer that gave us our baby. We found out that we were pregnant on June 25, and the weeks and months that followed were nothing short of blissful. Our sweet baby boy Miles was born on February 5th 2020. Life was as it was meant to be- the three of us, starting this new chapter as a family. But on April 9th, everything changed.
My husband was playing with our son’s feet when he noticed that his right foot felt slightly larger than the left, with a small bump just under the ball. After a series of referrals, appointments, scans and tests, we ended up at Sick Kids hospital in Toronto. In a cold room on May 8, 2020, a doctor told us, with my husband on Facetime, what any parent has nightmares about hearing. I’ll never forget the young oncologist’s eyes as she quietly spoke the words “we’re fairly certain your son has cancer”. She did her best to hide the tears that threatened to spill over the upper edges of her Covid mask and mirrored mine, making the moment simultaneously intimate and sterile.
That day in May would mark the beginning of a whirlwind summer and fall. When the tumour in his foot began to grow at an alarming rate, we were admitted to Sick Kids to start treatment before even getting our son’s final diagnosis: an extremely rare (i.e. 29 documented cases worldwide) sub-type of sarcoma, a soft tissue cancer. In addition to his diagnosis, we learned that the cancer had spread to some lymph nodes behind his knee. In short, thing weren’t looking great. Family and friends were stunned as we told them the news, and we relived our own shock and pain with each retelling of what quickly became a well-rehearsed story. We began a grueling 3-week cycle of chemotherapy treatment and grew accustomed to its patterns: Week One- admission to Sick Kids for three days of chemotherapy, Week Two- try to manage the side effects of a crying baby who can’t tell us what’s wrong, Week Three- rest and enjoy some somewhat “normal” time while he feels good before doing it all over again. Countless appointments for bloodwork, diagnostic tests, and transfusions consumed our lives, and I became a pseudo-nurse as I began to manage daily care tasks for the central venous line that ran into my son’s tiny arm, allowing them to pump the chemo drugs through his body more efficiently. There was only one caregiver allowed to attend appointments and stay with our son in hospital due to Covid restrictions, so Facetime became the norm for relaying medical news and spending time as a family during hospital stays.
As gruelling as chemotherapy treatment was, he responded really well and the tumor began to shrink significantly. That was the good news, but nobody could have prepared us for the news that came when we were just several weeks into treatment: our son’s right foot would have to be amputated at the ankle in September in order to give him the best chance at survival. As we processed the news, we had to re-imagine our baby son’s life with a whole set of new difficulties all the while recognizing that a life with some difficulties is better than not having him at all. I remember kissing his perfect little foot the night before his surgery as he slept, trying to permanently etch details of his pudgy little toes and soft skin into my memory.
Thankfully, our son healed incredibly well after his surgery as they said he would, and we slowly adjusted somewhat to our new life “post-treatment”. He received his first tiny prosthetic before Christmas this year at 10 months old, and we started a regime of physiotherapy to get him used to weight bearing on his new leg. After more clear scans in mid-December, we spent a blissful Christmas together, revelling in the thought that this chapter could be behind us and that we could really start our new lives together.
Unfortunately, in early January our son started vomiting sporadically. Family doctors, local pediatricians and my husband and I tried to chalk it up to just regular baby stuff- maybe some reflux? But as the days went on, it became clear that there was more going on. We had a regular check-up at Sick Kids on January 18th, and after an examination they admitted us overnight and sent our son for an MRI of his brain the following morning. In the late morning, our oncology team came in to deliver the news. We knew from the moment they walked in that it was bad. How bad? The cancer was everywhere, with too many brain lesions to count. I held our son tightly and my husband held my hand just as tightly. As tears streamed down all of our cheeks, the doctors told us that he had days, maybe weeks to live.
Although I sometimes wish I could forget, I remember every detail of that morning and the hours that followed. A steady stream of nurses, doctors, and social workers came in and out of our room and helped us to make arrangements to bring our son home to die, which despite our shock was the only option we could fathom. We were discharged that evening, and we stumbled back to the parking lot to our car to make the drive back up north in a snowstorm. I still don’t know how my husband drove the car- all I could do was sit in the back seat, holding my sleeping son’s hand as tears poured down my face.
Our son had lost many of his faculties by the time we settled in at home- a sharp decline from just days before. His balance and abilities to do basic things like swallow and laugh were disappearing quickly. But his spirit and smile shone through. Both sets of our parents visited daily, and he would muster together the strength to turn pages of books and interact with those who loved him. Our siblings and his cousins came to visit and say their goodbyes, and we prepared as much as humanly possible for the inevitable end. We celebrated his first birthday on February 5th, and on February 9th in the early hours of the morning, our life, our love, our sweet boy, peacefully stopped breathing in our bed between us.
So, that’s the abridged version of our story. Far too short, and far too painful. But it’s ours, and I feel compelled to share it. I’m still discovering the reasons for this drive- this inexorable urge to tell and document. All I know is that it feels right. And so begins this blogging journey. Welcome aboard.