My daughter Adaejah has always been a happy little girl—active, curious and very lovable. The fact that she was born with Down syndrome did not affect that. The fact that she had cancer did not change that.
The events that led to her diagnosis took place over a few months. Adaejah started at a school for children with disabilities when she was two years old. She developed a cold in September that had not subsided by December. She stopped eating and a cut over her forehead just would not heal. Multiple visits to our local hospital didn’t get us any closer to understanding what was going on, but within 45 minutes into an emergency visit at The Hospital for Sick Children, we found out she had leukemia. Adaejah was admitted immediately.
I was completely disoriented for a few days. The hospital connected me to a social worker to help me understand what was going on. My beautiful baby girl needed to go through several rounds of chemotherapy; she would not be coming home for six months; I could not go back to work because I needed to be at the hospital full-time; and I had to figure out how to manage as a single mother with two other kids at home.
I got a leave of absence from my job and received Employment Insurance (EI) benefits for parents of critically ill children. It wasn’t even the same as my salary when I was working, but I still had to buy food for myself and pay the bills the bills at home. My 17-year old daughter became the caregiver to my seven-year old daughter while I lived at the hospital with Adaejah. When a child gets cancer, it impacts the whole family and how you go about things day to day. It was a huge adjustment for my kids and me.
We thought we were out of the woods when they finally sent us home. But complications of all kinds followed. Adaejah developed septic shock and kidney failure and had to receive dialysis. She relapsed and received a bone marrow transplant from a cord donor. During her second hospital stay, everything we owned was destroyed by a house fire and smoke damage. For several months after we were released from the hospital, we lived in transitional housing because we could not return home while Adaejah’s immune system was so compromised.
While I have family in Toronto, I did not get a lot of support from them during this time. I don’t even know if I can call them family anymore. I am very grateful to the friends who helped me when they could, to the hospital, and to Tina, my POGO Interlink Nurse, who has gone above and beyond. Tina connected me to so many resources, including donations during the holidays, special subsidies that helped pay the rent, and the POGO Financial Assistance Program that helped me with food and childcare. She has worked through my EI applications with me and helped to reintegrate Adaejah back into her special school.
We are not out of the woods yet. Adaejah is being monitored closely because her blood count is low. When she is able to travel, my hope is that we can all make a trip to Jamaica to see where I am from.
Ashmara was married recently and gave birth to her fourth child, Jeremiah. She is looking forward to going back to work and wants to move into a different neighbourhood to provide a better home for her family.