(PART 1) Our life as a family was turned upside down

(Part 1 of a 2 Part Story about the Conor Foley Neuroblastoma Cancer Research Foundation)

It is such an indescribable shock as a parent to be told that your child has cancer.

Neuroblastoma is a rare form of childhood cancer and most of the children diagnosed are under the age of five. You’re talking of babies and toddlers being diagnosed with this cancer - it’s just unimaginable.

But we became a part of that unimaginable existence when our son, Conor, was diagnosed at the age of four. It was 2002, we had two other children, Emma who was nine, and Rachel, who was seven. Our life as a family was turned upside down.

Our friends rallied around as we entered a whole new world. Normality went out the window. I was so upset, crying all the time, but at the same time I was trying not to let the other kids see the upset.

I didn’t want to worry them. I didn’t want them to think something was wrong so I learned to keep the tears back. I probably came across as staunch or hard as a person but you do these things to survive.

When your child is diagnosed with neuroblastoma, you’re in hospital for a long time. Our first stretch on St John’s Ward, the oncology ward in Crumlin Hospital, lasted for six weeks. It was heart-breaking to have to hand our child over to strangers and put our trust in them as he went to theatre for surgery, undergoing anaesthetic.

Seeing our child, our gorgeous son, being pinched and crying - it’s just so hard. As a parent, every bit of your instinct, of you, wants to protect your child and keep them safe and, yet, you have to rail against that instinct and allow this to happen to them. You know it has to be done to beat this cancer but it’s awful.

We were given the worse possible news – Conor had just a 30 per cent chance of survival. Sitting in front of the consultant, I remember saying, “But there’s still hope. You’re not giving up on him and neither are we.” We weren’t in denial; we just wanted Conor to live. He got through the first fight of neuroblastoma.

Life was getting back to normal. You always have that worry at the back of your mind, but Conor was doing well. He started ticking off the milestones. His First Communion came and went, he was in fifth class and we were getting him ready for secondary school. He had been 10 years cancer-free but 10 years to the day, he relapsed. He was 14 years-old.

Devastation is not even a good word to describe how we felt. There are no words. We were heartbroken, our family, friends, Conor’s teachers and even the staff in Our Lady’s Hospital, Crumlin, were shocked to the core.

When Conor started his first round of treatment we didn’t even know if he’d make it to the weekend and we had to sit tight and wait and see. But he did and so began a further three years of treatment.

John and I spent every day of those three years with Conor. It’s not the norm for a teenager to spend so much time with his parents – even if he was at home and not in hospital, we were there. Again, I couldn’t let the tears flow as Conor was older now and he’d know straight away if something was wrong. So it was back to fight or flight.

www.conorfoley.ie

 

(You can read part 2 of our story here)