ON FEBRUARY 25, 2020, only 6 days shy of her first birthday, my baby girl Claire Bear was rushed to the hospital after an urgent phone call from our family doctor. I remember that day vividly. I see it play back in my mind as if I were standing in the corner of the room. I heard words but could not process them, while I stood there holding Claire, as if putting her down somehow meant I would never be able to pick her up again. The doctor said words like blast cells, oncology, hematology, bone marrow, transfer, and critical. Then, almost as if the world stopped, she said the words no parents ever want to hear, “we think your child has cancer, I’m so sorry.” In that instant our lives changed forever. We were transferred to Children’s Hospital at London Health Sciences Centre and admitted that night. How we made it through that night of waiting and worrying remains a mystery to me.
February 26, 2020, was possibly the longest day of my life as we were thrown into the world of paediatric oncology and needed to instantly learn an entirely new language. All our worst fears came to life that day. An endless amount of information coming from so many people. One after another. Claire was going for her first ever sedation to have a lumbar puncture and a bone marrow biopsy. We were told the risks and assured they were rare. Well, we learned quickly that Claire likes to do things the hard way and if something can go wrong, it probably will. Claire was in crisis. They called me into the room, Claire’s face and body were swollen, and she was retaining fluid. I held her as they shoved tubes down her throat trying to suction fluid off her lungs and stabilize her oxygen. Eventually things resolved and we were sent back to her room to wait. It was confirmed that our little girl did in fact have cancer. Specifically, B Cell Infant Acute Lymphoblastic Leukemia with a KMT2A gene mutation that left her at high risk for relapse.
I can’t remember exactly when it happened but there was a moment that made our burden of childhood cancer a little bit lighter. In walks a woman with an empathetic smile and a softness about her. A look that said, I have been where you are and have walked in your shoes. Her introduction was calm and one that was critical for us to endure Claire’s treatment. “Hello, I’m Renee and I am from Childcan.” The services that Childcan provides are many and for our family continue to this day, almost three years later. While our community rallied at home to make sure my husband and our boys were fed, Childcan and supporters like you rallied to make sure I was fed in hospital. No matter if I was there for 9 weeks, 5 weeks, or 2 days.... I had food vouchers to use in the cafeteria. Thanks to our Childcan parking pass, we never had to worry about hospital parking. Assistance with bills was also provided. Considering I was just coming off maternity leave and unable to return to work when Claire was diagnosed, this was a welcome relief. Childcan is more than just financial assistance. They are comfort you never have to ask for and it is there when you need it most. My boys have been supported through the Childcan Superstar Sibs program. Little gifts and recognition throughout the year that let them know they are important too! Renee is always checking in and I consider her my personal ray of sunshine.
Claire has spent so much of her life in hospital. In fact, it’s her favourite place to be. It is our home away from home and Childcan is like a warm blanket waiting to comfort us upon arrival. We have experienced so much heartbreak along Claire’s journey. She has fought cancer three times in 2 years. We have held her through a bone marrow transplant after her first relapse and CAR T-cell therapy after her second relapse. Claire should have finished treatment this past June but here we are. Today, she is in remission, and I thank God and her care team for that every day. We live life one day at a time and count our blessings often. I don’t know how this story ends. Honestly, I’m in no hurry to find out. One thing is for sure... My relationship with Childcan is forever. While I pray that some day their services are no longer needed, I will do everything I can to make sure they are able to help families just like ours in a time of need.
“Thank you for supporting an organization that does so much for so many. The road we are on is long and it can be so very dark. With the support of donors like you, Childcan is there shining a light in the distance, giving us hope, and keeping us going.”
Mandy, Claire’s Mom
Mandy shared Claire’s story for the 2022 Report of Hope. Here’s Claire, in August 2023, reading her story in the report. You can read it too here.
