Our son, Shawn, was diagnosed with a brain tumour called an ependymoma at 16 months of age. He had been sleepless and irritable and after four different doctor visits over a month’s time, we finally received a diagnosis. Shawn was rushed to SickKids Hospital where he had surgery the next day. The surgery removed 99% of the golf ball-sized tumour and relieved the pressure of fluid that had built up in his brain. Once Shawn was out of intensive care, a few weeks later, he started 33 rounds of radiation. We lived a few hours away from the hospital so I stayed with Shawn and my husband stayed at home with our three-year-old daughter.
When a child is diagnosed with cancer it affects so many aspects of a family. Not only were we devastated that Shawn has such a serious illness but we were hit with what was called our new ‘normal’. Living apart for days and weeks on end. Our daughter not quite understanding what was going on. The stress on our finances as I could no longer work. It is a whirlwind of change, worry and upheaval.
After four months, we were able to move back home and live all together as a family. Shawn was doing well and learned to walk and talk once again. However, during a routine MRI we learned that Shawn had what’s called a goose neck. A small piece of vertebrae had been removed during the initial surgery and now his body was not compensating for its loss. He underwent a bone graft where bone from his hip was harvested and then grafted to his spine. He wore a body cast for four months while his body healed. You would think that he would have hated the cast but, like all these kids faced with such adversity, he smiled through it and figured out ways to get around anyway!
The cast was removed in January and Shawn learned to run around again and was a happy little guy once again. We participated in a fundraising event called Meagan’s Walk where thousands of people encircle SickKids in a gigantic human hug. It was an amazing experience to be part of that day alongside families who had similar experiences to ours.
We were on our way to being a ‘normal’ family again, or so we thought.
In May, almost a year since his initial diagnosis, we learned that Shawn’s tumour had come back and in fact he had two more down his spine. We tried two months of experimental chemo but to no avail. The tumours were growing at an alarming rate. There was nothing that could be done. We enjoyed the summer as much as we could and then watched as Shawn lost one ability after the next and eventually passed away on October 1, 2007, just before his third birthday.
Since then I have written a book called ‘A Sippy Cup of Chemo’. I wanted to not only share our story so there was a little piece of Shawn out there in the world but also wanted to help other families travelling down the same path. Going through a devastating illness with your child and then grieving through the loss of them is not something that many can relate to. I wanted to provide an insight into our journey for other bereaved parents who needed to know that they are not alone.
My book is available for purchase on Amazon. All proceeds go to a non-profit organization called Meagan’s Walk, benefiting brain tumour research at SickKids. https://www.amazon.ca/Sippy-Cup-Chemo-Familys-Childhood-ebook/dp/B01AKWPQW4/ref=sr_1_sc_1?ie=UTF8&qid=1473710705&sr=8-1-spell&keywords=a+sippy+cup+of+cehmo
– Sue McKechnie (Shawn’s Mom)