Dedication to our Superman, Alex
Alex’s entry into this physical world was not an easy one. After 41 hours of labour and the use of forceps, he blessed us with his presence but not without the sign of his physical struggle – a crescent shaped cut on his left cheek.
During his first weeks of life, it was determined that Alex had a kidney reflux. After visits to the pediatrician and SickKids, a one year antibiotic treatment was decided on to avoid any possible infections with the hope he would outgrow this condition. There was such angst watching our infant swaddled in a blanket undergo a VCUG xray. Little did we know at that time, the further depths of fear and anguish we would experience. The good news was his little body healed itself.
Alex was a very content child. He was sweet, kind and gentle. He carried a wisdom that was well beyond his years. He found pleasure in simple things – reading, playing with friends and family, spending time in the sand and water at the cottage, but his particular love was for his Rescue Heroes. He was drawn to fire fighters and fire trucks so Billy Blazes – the fire captain – became his real life super hero. Hours were spent imagining himself as that rescue hero.
Life was simple and innocent then.
At the age of 9, Alex was back at SickKids undergoing tests of a different sort – more ominous, frightening tests, making the VCUG seem like a walk in the park. Tests that would ultimately tell us that osteosarcoma – a bone cancer - had invaded his body – primarily in his left femur, but also in his hips, right ankle, his ribs, and in both sets of lungs. This was the same cancer that claimed Terry Fox’s life. Although there have been many advances in cancer treatments, osteosarcoma outcomes have not improved substantially in recent years. We were never given a prognosis nor did we ever ask, because I think we knew the answer. Life was not so simple and the hope of him growing out of this condition was not an option. As with his birth, this diagnosis challenged Alex physically, but his will and fortitude to get through all of the obstacles never waivered.
With every drug and treatment came a slight chance of a side effect and it seemed Alex was never a textbook case. His initial chemo protocol was the traditional cocktail for osteo patients – this did not work for Alex. With the next chemo protocol, there was a very slight chance of going into a coma like state – Alex did, though that chemo seemed to work and the tumours began to recede. He underwent two surgeries within six weeks – one lasting 14 hours and the other 9 hours - saw 1 general surgery team and one orthopedic team working side by side, not a very common practice. Finally there was a slim chance that the chemo protocol could bring on a secondary cancer in future years – with Alex it came on almost immediately in the form of AML, and some osteo tumours had begun to reappear. Ultimately, our sweet little rescue hero was in no position to be rescued – he was dealing with not just 1, but 2 terminal illnesses.
Despite all of this, he showed us the way. His innocence, honesty and strength to face the situation head on left us in awe – how could someone so young be so wise. When we knew he was terminal, he asked to be the one to tell his brother and sister which he did with grace and love, comforting them after delivering the news.
Most of you know and saw yesterday Team Axle. Immediately following his initial diagnosis, family and friends leapt into action and supported us throughout Alex’s illness and death, and continue to support us in trying to improve the life and outcomes of children with cancer. You are part of the team seeking to do this and it is a noble mission.
Just a few weeks before Alex died, he asked me “Dad, what is your greatest fear?”. It was an innocent question that a child asks but he had no concept that my greatest fear was playing out and I could not stop it. We want to stop it. We couldn’t for Alex but we can for other families and children.
In the words of Billy Blazes himself – “no one gets left behind” and we certainly never feel like Alex has left us behind – he continues to show us the way. Alex is our Rescue Hero. We love him and we miss him.
So I’d like to dedicate this ride to Alex but also to the Team, the Team that you are part of which is trying to change outcomes for children like Alex and their families.