Simon Julian Steele

Simon Julian Steele

Nov. 27, 1997 – Jan 10, 2014

  • Hometown: Lunenburg, Nova Scotia
  • Year of Diagnosis: Feb 22, 2013
  • Diagnosis: Acute Lymphoblastic Leukemia (ALL) with associated Hypodiploidy

Simon was a shy 15 year old at first meeting, but he had a wicked sense of humour and devoured comedy, Monty Python and Dr. Who. This became his therapy during treatment. He had a great core group of friends and family who stood by him no matter what. He loved music, playing X-Box and was a real foodie. He also spent three great years with the Royal Canadian Sea Cadets, and continued to love sailing and kayaking at out cottage every summer. Life’s biggest problem was too much homework.

Simon was going about his day to day life with a smile, but what we thought was a recent bout of flu just didn’t go away.  He began having leg pains which gave him trouble walking. After a 2nd trip to the ER & a simple blood test, we were told “your child has cancer.”  That day changed things forever. Unfortunately, Simon’s diagnosis also came with an even more difficult aspect. The genetic markers on the Leukemic cells disclosed that Simon also had an extremely rare condition associated with the leukemia called Hypodiploidy.  His cancer cells were getting scrambled messages and a group of his Leukemic cells lost half of their chromosomes.  This meant he would be much, much harder to treat.  Only 1-2% of all diagnosed cases of ALL in children will ever have this.  Due to its rarity, Simon was only the 3rd child ever to be treated with this at the IWK hospital – it is a much lesser known component of the disease & much more research is needed in this foggy area.  With this diagnosis, we were told Simon’s prognosis had become poor. Simon was determined to do whatever it took to fight this dreaded disease.  He was put in a high risk category & treatments became intense.

During the 11 months of Simon’s illness he endured numerous procedures including 2 surgeries, 92+ sessions of chemo, 63 blood transfusions, 133 lab tests/finger pokes, 6 bone marrow tests, 13 Spinal taps, 18 anaesthetics; as well as numerous x-rays, ultrasounds, echocardiograms, feeding tubes & more.  All this in under 11 months to a young man who was previously afraid of needles.  He still managed to smile & his love for life, friends & family never wavered. Humour was always his medicine.

On Jan. 10 2014 Simon passed away at home at the age of 16 surrounded by the people he loved and who loved him. His lessons in courage and resilience continue to inspire his friends and family. Simon recently became the subject of a song recorded by Classified called “It’s Hard to Understand,” so that now even more people know his name and how he bravely faced what life gave him.

 

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