October 15, 2009 will forever be ingrained in my memory. It was the day my son Justin came to me and said, "Mom, I have something wrong with my leg. It's really stiff. Weird!" I really didn't take it too seriously because he was the type of kid who skateboarded off of rooftops as a child so we were no strangers to cuts, bumps and sprains. He is THE toughest person I know.
However this time it was to be different, very, very different. On December 15, 2009 he was diagnosed with Ewing sarcoma/PNET tumor in his left pelvis. He just turned 24.
We were shocked, numb really. It is every parent's nightmare to hear the words 'I'm sorry to tell you but your child has cancer'. It's a surreal experience. The doctor's voice gets further and further away even though he hasn't moved an inch. You fight with your mounting panic so you will remain calm for your child. We had never heard of Ewing sarcoma so I Googled it once we got home. The grim statistics did nothing to calm our fears.
We live in Labrador City, NL. It's a small iron ore mining community in western Labrador in north eastern Canada. Our capital city is St. John's, on the island portion of the province, and is where we would have to live for the next 10 months for Justin's cancer treatment. He received VAC and EI chemo protocol alternating for 28 cycles along with 31 sessions of radiation. I moved to St John's with Justin and my husband visited as often as he could. St John's is 2100 km from Labrador City and a $900.00 plane fare - and a world away from Justin's friends.
Over the course of his treatments, I Googled everything I could about this cancer. I had no information about it and had never known anyone who suffered with it. That is until we met a wonderful young man, Jeff, who was in his last weeks of treatment for Ewing sarcoma and who happened to have a relative who knew my relative. We were grateful to have someone to talk to, to tell us what to expect and how we would try to navigate this monster that had invaded our lives.
Sadly Jeff's story did not have a happy ending. As I write this, March 21, 2013, he is on my mind a lot as it is the second anniversary of his passing. He was a fierce warrior and will forever remain my hero. He was 22.
Today, three and a half years later, Justin continues to do well. We can only pray this trend continues as no one knows what the future holds.
I am eternally grateful to the Pernica family for creating the website www.ewingscancer.ca. It was a beacon of light to me during one of my dark sleepless nights when I would indulge in my Google-fests searching for hope. It was the only semblance of support I could find for this cancer. I contacted Tina and instantly no longer felt alone with our constant Ewing companion. I am blessed, blessed, blessed with supportive friends and family and without them I doubt I could have gotten through. Tina provided me with the support that can only come from someone who has been there and what a friend I have found in her. Blessed again!
It is my hope that I will be able to help someone else the way Tina and the Ewings Cancer Foundation of Canada has helped me.
The Ewings Cancer Foundation of Canada
Director, Eastern Development