On August 6, 2014, our three-year-old Emma was diagnosed with Acute Lymphoblastic Leukemia (ALL). I clearly remember hearing the doctor at SickKids explain that while Emma does have cancer, we could consider ourselves lucky. With a cure rate of over 80%, we had a good chance of surviving this cancer. With a 1 in 9 chance of losing my child, I didn’t feel especially lucky.
Emma persevered through 3 years of chemo at SickKids in Toronto. Her three years were full of ups and downs. She spent countless weeks and months at a time in hospital, wrestling with all of the side-effects that chemo can inflict: infections, open sores, hair loss, perpetual pneumonia, having to relearn how to walk, having to relearn toilet training and some of the scariest moments imaginable. The worst part of these hospital stays was that for weeks or months on end, Emma was without her sister April. The two girls missed each other terribly.
Emma got through Leukemia, and in 2017 officially ended treatment! We were so happy to put that chapter behind us.
Unfortunately, the sequel came out in early 2019, when Emma relapsed. This time the doctors weren’t nearly as positive about her prognosis. Traditional treatment options were now offering a success rate of 10-20%. As this news settled, and we started to learn about the difficult months that lay ahead, we were referred to a doctor that changed everything. As it turned out, Emma’s relapse couldn’t have been better timed. Emma relapsed in February 2019. In January 2019, Health Canada approved a new treatment for ALL. This new treatment, called Car-T Cell Therapy, would increase Emma’s chances of survival to 50-60%. There were only two issues: Emma didn’t qualify for this treatment, and this treatment had not yet been offered to Canadian children as a commercial product. We were desperate for her to have this increased chance of survival and started to put together a plan to pay for the +$500,000 treatment in case she wasn’t approved by Health Canada. Emma’s medical team felt so strongly that she should have access to this treatment that they got to work right away in advocating. Her doctors at SickKids got in contact with all of the Children’s Hospitals across Canada and together petitioned the government to redefine access to this treatment. Doctors in Ottawa, Hamilton, Vancouver and London that had never even met Emma were advocating on her behalf. Their hard work paid off and Emma was approved! This little trailblazer was the first child in Canada to get a commercial Car-T cell product.
The way that this treatment works are amazing. Unlike chemo (which kills off the body’s good cells AND cancerous cells), Car-t cell therapy reprograms Emma’s own cells to detect and fight off cancerous cells.
Access to this treatment was the answer to prayers, but we knew that the journey wasn’t over yet. As Emma underwent the treatment, she and her older sister April daydreamed about the wonderful things that they would do when we got to the other side of cancer. We shared with them that Emma is a Guelph Wish kid and that they could plan a special wish. They spent hours talking about a trip that they wanted to take. These dreams got us through some really dark moments.
Because of the wonders of modern medicine, and with the help of the Guelph Wish Fund, Emma is once again cancer-free and can now concentrate on living life to the fullest. Emma is 10 years old and looks forward to her monthly check-ins at SickKids. Travelling to the big city is a reminder of the big challenges that she has faced and conquered. As soon as Covid-19 is a non-issue, we’ll get to planning Emma’s special trip.
Thank you so much Guelph Wish Fund!
~David and Carinta
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