Jordan Heglin 6 years old
My name is Michelle, and I am a single mother to a now 6-year old boy. The scariest day of my life was when I was told my only child, who was then four-months old, had retinoblastoma, eye cancer.
The ophthalmologist proceeded to tell me that Jordan will lose an eye and that it’s fatal if not treated. While I sat in shocked silence, the doctor then looked into the other eye. Yes, it was bilateral, he said, and you need to get to Toronto a soon as possible.
Stunned, I went home and booked flights. The next day we were on our way to Toronto and ever since it has been a roller coaster ride full of tears, fears and absolute despair while watching him endure the treatment he was going through. This was the worst time of my life, yet I could still see laughter and be in awe as Jordan was able to smile and giggle at the anticipation of being tickled.
My new residence and safe spot was at the old Ronald McDonald house in downtown Toronto.
Without a partner I found it challenging to even do the basic things in life, like go to the store or for a walk. My solitude was broken up by visits from my mother (lives in BC) who helped provide emotional support when it was time for another round of chemotherapy.
Once allowed home my son and I had to travel back to Toronto every two weeks for painful laser treatments. It required all of my vacation time, at least 2 days of travel for every trip to Toronto. The financial burden was the last thing on my mind, with no time to build up strength and no time to recharge I felt myself falling.
After his eye was removed and his other eye was responding to treatment we gradually have been given the green light to extend our time between eye exams.
Finally these last couple of years I have been able to have vacation time to be with my son and enjoy my “new normal” instead of living in constant anxiety and fear.
Every day is a new adventure with my son and I am learning to focus on what he can do instead of what he cannot. His good nature is still present and he has the most awesome giggle that I find infectious. I can’t imagine my life without him. No parent should have to fear outliving their child.
My goal is for my son to heal and repair what chemo and his diagnosis have left him with and to be a strong voice in supporting him.
I will continue to advocate for my child. Jordan was wrongly diagnosed for two months; we were told his eye problem would clear up.
This cost us valuable time. Now I have learned to use my voice and if I can save another child’s vision, or life, then I am grateful I found the courage to say something in front of people. We have a saying “Know the Glow”. You can see the cancer in an RB child. Know what to look for and be your child’s advocate.
While we still must travel to Toronto for check-ups, the last few doctor’s visits have been in Calgary, as Toronto Sick Kids Hospital is working with the Alberta Children’s Hospital and for that I am grateful.