On an evening in May of 2013, Cheryl Tourangeau knew something was very wrong when her then 9-year-old son Alex’s face suddenly became paralyzed. Alex’s facial paralysis was diagnosed as Bell’s Palsy – a condition that causes the facial muscles to weaken or become paralyzed. Mysterious bumps also appeared on his head that resembled infected insect bites that were “red as a fire engine,” says mom Cheryl. Alex was seen by a doctor in Emergency who prescribed antibiotics – but they didn’t help heal the bumps. Next step – the Children’s Hospital of Eastern Ontario (CHEO) for a consult with Dermatology and a series of blood work and a biopsy to determine the cause of the angry red bumps.
The family wasn’t prepared for the shattering news they received – a diagnosis of leukemia (T-Cell ALL) – a cancer of the blood cells. 80 percent of Alex’s bone marrow was cancerous and it was in his blood and spinal fluid, too. Shortly after receiving his diagnosis, Alex also experienced double vision and a 12-centimetre mass near his lung and heart was discovered.
Shocking news for sure, as Alex has always been very active and just the week prior, Alex and his soccer team won gold in their tournament! He played on two soccer teams and also participated in Kung Fu and Mixed Martial Arts.
On July 12th, 2013, Alex received his very first (of many) chemotherapy treatment and so that his parents Cheryl and Claude could be close by him, they moved into Manoir Ronald McDonald House Ottawa – which is only 167 steps from CHEO. The House helps families stay together while their child undergoes treatment for a serious illness at CHEO. “Ronald McDonald House was very homey looking and nice and really became our home away from home for 10 months,” says mom, Cheryl. “Throughout our roller coaster ride, we had such a huge support network that we developed at The House which we still maintain today!” said Cheryl. “We were so fortunate and it was awesome not to worry each time we wanted to take a shower or had a load of laundry to do, home was there” said Cheryl.
In December of 2013, Alex had to overcome yet another obstacle – a bout of scurvy. However, in May 2014, the family received the wonderful news that Alex was well enough to be on a maintenance program and was able to return to his home in Cornwall! “At the end of his stay at CHEO, he received his last radiation treatment and Alex was excited to be able to ring the triangle at The General Hospital where he received his radiation,” said Cheryl. Ringing the triangle marks the completion of radiation treatment.
He had two years of no hospitalization, however, on the May long weekend of this year, Alex developed a fungal lung infection which unfortunately, meant another 29-day stay at CHEO.
Alex missed all of grade 5 and last year, although he missed 59 ½ days of grade 7, he still managed to be recognized on the honour roll, with an overall average of 80%!
Throughout his illness, Alex has had to courageously endure 1,144 doses of chemotherapy, 10 sessions of cranial radiation and 27 lumbar punctures (spinal taps). To honour his braveness, Alex has been receiving assorted beads of courage to add to his necklace given to him from Candlelighters – a not for profit organization that helps young cancer patients and their families. Each colour of bead represents a procedure, poke, chemotherapy or surgery that Alex has experienced throughout his journey. So far, Alex’s courage bead necklace measures a whopping 117 feet long!!
Although the family has had to endure many, many obstacles throughout Alex’s journey, there have also been some awesome experiences for Alex! In 2014, Alex was chosen to represent Manoir Ronald McDonald House Ottawa at the RBC Canadian Open in Montreal, where he was very excited to meet (now) Nashville Predators defenceman, PK Subban! He was also part of the McDonald’s Dream Team for the CN Cycle for CHEO this past May! He has had the chance to meet Caroline Calvé – Canadian’s women’s Olympic Alpine Snowboard gold medalist, Brad Jacobs – Olympic Curling gold medalist and Benoît St-Amand, – Canadian sledge hockey team in the Paralympic Games.
We were very blessed to have Alex join us at our recent Lagois Golf Tournament (in support of Manoir Ronald McDonald House Ottawa) where he was able to show off the rewards of his recent golf lessons! Alex also proudly shared his beads of courage necklace with our tournament participants – which was so long, that it expanded around the space of the entire room!
“Alex, you are an inspiring young man! Forever, I will cherish the courage bead necklace you, your mom and your dad presented to me. There are no words to describe the profound impact that this has made on me – Thank You! Looking forward to our next golf adventure!” – Herb
On October 27th, Alex received his final chemotherapy treatment by IV and on November 7th, he will take his last chemotherapy pill. November 24th will mark the long-anticipated day that Alex will get to ring the end-of-treatment bell at CHEO!!! Way to go Alex!
2017 UPDATE: Meet Alex at the 9th Annual Lagois Charity Golf Tournament on Friday, September 15, 2017 where he will be on the course with us at Manderley on the Green as the Ronald McDonald House Ambassador! Details about the event can be found here.