Carla Garrett first heard the word “palliative” over a decade ago when her eight-month-old son Xavier was diagnosed with a large aggressive tumour in his brain — an incurable cancer that would affect almost every function of his body as it grew 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”.
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.
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. 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.
Filling a gap
Carla and Dr. Adam Rapoport of Sick Kids in Toronto co-led a team of families and pediatric specialists from across Canada who have come together to develop a webspace – CaringTogether.life (SoignonsEnsemble.ca) – tailored to the specific needs of families caring for a seriously ill or dying child and those who are experiencing pregnancy or infant loss. Through shared stories, videos, articles and resources, CaringTogether.life helps parents care for their child, themselves, and their family. The webspace is an initiative of the Canadian Virtual Hospice with funding from Health Canada.**
Making a difference
Carla says that if CaringTogether.life had been available when Xavier was diagnosed, “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.”
Although the road families walk will always be a painful one, you don’t have to walk it alone. CaringTogether.life is here for them every step of the way.
*Read more of Carla’s story in her Blog post on www.CaringTogether.life.
**The views expressed herein do not necessarily reflect the views of Health Canada.