Our Journey
My older daughter was diagnosed with a brain-stem tumour in August of 2004. Her tumour, a Juvenile Pilocytic Astrocytoma, is classified as a benign
tumour because it grows slowly. This sounds good on paper, but the impact on my daughter’s health and on our lives has been anything but benign.
For example, three days after her 3rd birthday, I was advised, by a professional from whom we were seeking help, that Cailyn had less than
a year to live.
The best medical intervention for this type of tumour is surgery but the location of Cailyn’s tumour makes surgery very risky… the majority of the
cranial nerves that run from her brain to her body pass through the location of her tumour. Having surgery in this part of the brain is scary
and has life-long consequences.
My daughter’s journey includes the following milestones (not necessarily in order of occurrence):
- 4 brain surgeries (two biopsies, an ommaya reservoir reposition, and a life-saving resection at NYU in New York)
- An allergic reaction in 2004 to one of her chemotherapy drugs, resulting in two back-to-back hospitalizations
- A code-blue in New York as a result of an overdose of fentanyl, a very powerful opiate
- Significant, life-altering, post-resection deficits causing depression-like behaviour
- Living for 4 months at Bloorview MacMillan for intensive rehab
- Hundreds and hundreds of hours of therapy
- 2 eye surgeries
- Tumour progression in 2006 – resulting in two years of weekly chemo
- Tumour progression in 2011 – resulting in on-going weekly chemo
- Reconstructive foot surgery sometime in the next couple of months
These milestones communicate only the tip of the iceberg. They don’t begin to express the emotional, physical, mental and spiritual challenges
experienced along this crazy roller-coaster ride. Not only are there pages of details behind each bullet, there are many other impactful
events, decisions and outcomes. The book I’m currently working on, “Hope: The Ultimate Placebo“, documents
the first 9 months after this life-changing diagnosis. As I’m working to complete it, I will share excerpts.
I was also diagnosed with a brain tumour at the end of 2009. After a couple of increases in the size of my tumour, I received gamma-knife
radio-surgery at Toronto Western Hospital in August of 2011. My tumour has been stable since then and I’m hopeful to receive continued good
news at my next MRI in July 2016.
My diagnosis has certainly broadened my perspective through first-hand experience of a scary health-care journey. The grace with
which my daughter has managed her journey has been both amazing and immensely inspiring. I often think of her determination and positive
attitude and tell myself to “suck it up”.
As you learn more about our journeys, I’m hopeful that you find some inspiration to remain hopeful through your challenges!