© 2016 by The Conor Foley Neuroblastoma Cancer Research Foundation

We had never heard the word ‘Neuroblastoma’ before, we didn’t even know it existed when we were told that our son Conor had Cancer. It was a huge shock to the system and then on top of that you hear ‘Neuroblastoma, a very rare cancer’- even worse and only a 30% survival rate- more bad news- it was getting worse and worse. How do you react? You don’t. Not straight away, you have to let the words sink in, you’re not given a handbook or a rule-book the day your child is born on how to react when your child is diagnosed with Cancer. We left St. John’s ward that day and decided to take the 30% chance and run with it, focusing on the positive- to remain as positive as we could.

 

Conor had just turned 4 when he was diagnosed with stage IV Neuroblastoma, and over the next 2 years he underwent intensive treatment. His treatment entailed 6 months chemotherapy on the ‘Kushner’ protocol followed by a bone marrow transplant and 25 radiotherapy sessions, followed by another 6 months of roaccutane treatment before finally being given the ‘all clear’ 2 years later- this was the news we had waited so long to hear. Conor being in remission was the best thing we could have hoped for, but it was only after his 5-year check up that Conor was officially declared ‘cancer free’ and life could slowly start to get back to normal. Conor was able to start school, make new friends and just live life as kids his age do. He managed to do it all, despite having some set backs along the way- one of which included the hearing loss he suffered as a result of the chemotherapy, but as always Conor continued to overcome every obstacle that came his way. And so, after 10 years in remission we felt our positivity had won the battle and that Conor had beaten Neuroblastoma for good.

 

But in April 2012 at the age of 14, almost exactly 10 years to the day Conor relapsed with stage IV Neuroblastoma- again the news of relapse was not good and this time he was given only a 5% chance of survival, but we didn’t give up. He embarked on another intensive 2-year protocol of treatments all of which were different to what he had received in 2002. He also underwent MIBG treatment and a second bone marrow transplant after which he was once again in remission. This allowed Conor to receive the latest immunotherapy treatment for which he was the first relapse patient to receive it. He also trailed the portable ‘Baxter pump’, which had not been used with children before, it meant that he could receive his treatment at home, which is now the case of all patients that are eligible to use this pump. After more of this intensive treatment, Conor was given the ‘all clear’ in March 2014- a remarkable achievement for this disease. We were all ecstatic, all he had to endure was finally over and now he was unstoppable. Conor was carefully monitored every 3 months, but unfortunately after only 8 months of being in remission, he relapsed again, but thankfully the oncology team in Crumlin’s children’s hospital never gave up- nor did we. We kept fighting and Conor became the first child to have his tumour tested for potential new molecular targeted therapies. The results of which meant that Conor was also the first child in Europe to trial a novel drug that is now newly available here from the USA. But unfortunately, due to the sneaky and unpredictable nature of Neuroblastoma, it took over and Conor passed away just aged 17 on the 3rd of July 2015.

 

We as a family know what it is like to deal with this cancer and all that it entails. Conor endured endless MIBG scans, CT scans, radiotherapy, chemotherapy, blood and platelet infusions, stem-cell rescue, immunotherapy – he did it all and never complained, once he could see his very TV programmes and movies he was happy. We also know that Crumlin is the centre of excellence for paediatric oncology in Europe and that is why with their support we want to raise as much money as we can to help the fight against Neuroblastoma- we want children with Neuroblastoma to get the best, most novel treatments and for them to be available here in Ireland, but in order for any curative treatment to become a reality we need to fund research. Throughout Conor’s battle it became very clear to us that there has been no funding for Neuroblastoma research in Ireland and so we want to change that by raising as much money as possible to fund research into Neuroblastoma, ultimately finding a cure. Furthermore, we hope that by setting up this charity we will help other children and their families who are currently fighting this disease, but also for families in the future who have to deal with this cancer so that there will always be hope for them, knowing that there is research being carried out in Ireland to try to find as cure- as Conor did not die in vain.

 

We will forever be grateful to Crumlin hospital and the entire oncology team in St John’s ward for looking after and fighting for Conor’s life for 14 years, as any family affected by this disease will know that it is a milestone to reach the age of 17.

 

‘The Conor Foley Neuroblastoma Cancer Research Foundation- fighting for a cure to infinity and beyond’

 

Conor would have been 18 years old on the 21st of April 2016.