It’s been over a decade now since I first heard the word ‘palliative’ in relation to my son Xavier’s care.
Things were a lot different back then. In fact, there was very little Canadian information Google could dig up for me during those sleepless nights to help explain exactly what palliative care meant for my then eight-month-old baby and our family.
Xavier had been diagnosed with a large aggressive tumour in his brain — an incurable cancer that would essentially affect almost every function of his body as it continued to grow on his brainstem.
I was in shock, confused and hurting as my baby went for life-saving surgery within hours of the tumour being discovered. But there it was in plain sight, written on a blank piece of paper… the word palliative. I stared at that word, my eyes stinging from the many tears shed already, trying to digest our new life in one big gulp.
Palliative care was for my grandma or someone else with end-stage cancer. Not a child, not my baby!
My ignorance led me to believe my son must be dying — right now, that night. That thought only heightened the panic I was already feeling. I was so confused. Our journey was just beginning. We had treatments, so how could palliative care even be on the same list?
During the beginning of our journey, there were no Dr. Dave Lysecki’s (a paediatric palliative care specialist) in the children’s hospital or this webspace, which could have eased my anxiety and given me a place to turn when I was too afraid to ask our doctors.
I may have also learned sooner that palliative care didn’t mean Xavier was dying: It meant providing him the best quality of life by giving him (and our family) the best life possible for however long that might be.
Years later, when Xavier reached end-of-life, we finally understood the difference and were then fortunate to have Dr. Dave walk beside us as we said goodbye to him in the way we wanted.
It’s a painful and lonely road for parents knowing your child’s life is limited by their disease or condition. There are so many decisions and questions that just aren’t topics you bring up at your weekly mom’s group. Nothing kills a room more quickly than talking about the plans for your child’s funeral or who you want to be there when they take their last breath.
CaringTogether.life is a much-needed webspace that you are welcome to use as much or little as you need to help find your way. Although this road we walk will always be a painful one, you don’t have to walk it alone.