Updated: Jul 2, 2021
Sofia was diagnosed Acute Lymphocytic Leukaemia (ALL) at 17 months of age on August 13, 2019.
When Sofia first started bruising in late June 2019 we didn’t think much about it. She was just learning to walk and bumps and scrapes were commonplace.
Over the next month of July we would notice a few bruises that we couldn’t explain. We attributed them to all the running around and playing she enjoyed with her twin sister and older brother.
In August we went to our cabin for some rest. Sofia tired very easily and seemed to spend most of her time curled up on my lap. One day she woke up from her nap with a purple bump the size of a golf ball on her forehead. She also had purplish spots on her leg and inside her mouth. She didn’t have a fever and she didn’t seem really sick, but we knew something was very wrong and this wasn’t just typical learning to move bruising. We rushed back to the city to see our family physician.
Our Doctor sent us to have blood work in the Peds Emergency department so we could have our results quickly. The staff we saw first seemed very concerned and told us as much - at this point I knew it was Leukemia. The diagnosis would be confirmed later that day.
Within two days she was scheduled for her first surgery to have her port placed - this is a special device under her skin with a catheter that connects with a large vein. The port is how she receives chemo, blood transfusions and also how her blood is drawn for testing. If you were to look at Sofia, you can see the tell-tale bump under the skin of her chest. It’s something she has in common with the many other children in the oncology clinic.
Sofia’s journey has had many ups and downs. It has been difficult to watch her endure spinal taps, chemotherapy infusions, blood transfusions, repeated blood work, hospital stays, nausea and mood changes. There have been repeated pauses and worries as we wait for her to bounce back from the last chemo before she starts her next one. It has been a tough slog for all of us and she amazes us at her ability to bounce back and keep on playing with her siblings. She never tires of playing Lego, and watching Peppa Pig.
After 9.5 months of being at the hospital multiple days every week Sofia entered the Maintenance phase. During this phase we only have chemo once a month and will continue here until the end of 2021. After such a scary and overwhelming beginning, we have found routine and a sense of hope after cancer.
We are immensely grateful for the support of our family and friends and the wonderful care we have received from the staff at Jim Pattison Children’s Hospital. It truly takes a village to care for and manage the complex care and attention Sofia has received over the past 18 months. She has received a staggering amount of blood and platelet transfusions to help fight the cancer and words can not express how grateful we are for blood donors.
Cancer is scary and hard and something we had not planned on having to deal with in a child so young. Thank you for supporting families like us.