(PART 2) New foundation will focus on research into neuroblastoma

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

The one thing that kept us going was that there were now new treatments available to Conor and after those three years, we got the news that he was again cancer-free.

You can imagine how we felt: ecstatic, over the moon, relived but weary at the same time. It was a remarkable achievement by both Conor and the oncology team in Crumlin hospital, but it didn’t last long.

After eight months in remission, we were back in Crumlin again. We never gave up and Conor’s oncologist, Dr Cormac Owens, went worldwide for a cure for Conor but neuroblastoma is aggressive and it took over.

Recently, we celebrated Conor’s 18th birthday, but not in the normal way. All Conor’s family and friends were there. The only person missing was Conor. He passed away just nine months ago.

Conor loved life and was a very happy child and we felt we couldn’t let the occasion go by as Conor would have been in the thick of all the celebrations like he was at both his sisters’ 18th and 21st birthday parties.

We decided to get together and have a balloon release to the music of one of his favourite songs and at the same time raise money and awareness for the charity we have set up in his memory.

The Conor Foley Neuroblastoma Cancer Research Foundation will focus on funding research into options for children with neuroblastoma who suffer a relapse. Organising Conor’s 18th was not an easy task, believe me, but it meant we were thinking of him constantly and we knew he would have loved to be there and would have loved all the party fuss.

We love and miss Conor every day. The house is so quiet, especially on Saturday and Sunday mornings when Conor would be up at 7.30am, watching his cartoons and having the TV blaring.

Our home was always full of noise. We all did as much as we could to be like a normal family with Conor and we never let hospital get in the way. We went to the movies with him, out to dinner, watched DVDs and had pizzas with him – we didn’t waste a second with Conor - right to the very end. We always saw dealing with neuroblastoma as this incredibly valuable time with Conor.

We always dealt with Conor’s illness privately. There were no Facebook pages tracking Conor’s progress. The day we launched the website for Conor’s charity was very emotional for me.

I feel like he is out there now in the big world now with his charity. He will never get to do the things that most 18 year-olds do. He won’t go inter-railing in the summer, he’ll never go bungee-jumping off some bridge, but I feel that he’s part of the world, doing something good for other children and their families.

We valued our time with Conor so much, and now we want to help researchers who will give families even more time, more options, perhaps even a cure for their children when they get the same awful news that we did. I think he would approve of that.

People can donate to the Conor Foley Neuroblastoma Cancer Research Foundation by visiting the website www.conorfoley.ie and clicking on the ‘donate here’ button or visiting the Facebook page.

 (You can read PART 1 of this story here)