Joe and Audrey Butler are the parents of Charlotte, who died in April, at the age of five, after a two and a half year battle with neuroblastoma (Ashya King suffers from medulloblastoma). They and their other three children live in Co Meath.
Charlotte was cared for by a consultant-led team at Our Lady’s Children’s Hospital in Dublin, the centre for childhood cancer in Ireland. “Our local priest said, ‘If we gave you €150,000, would it help Charlotte in any way?’ We said, ‘We don’t need €150,000, because we are getting the best care in the world,’ ” says Joe.
“Google ‘cure for cancer’ and it will give you 10,000 places where you can go. Unfortunately, people seem to go to the internet these days rather than listen to the experts.
“When Charlotte was diagnosed, ‘neuroblastoma’ was just a word to us. We didn’t know what it was. When she was diagnosed, the consultant sits you down to tell you what the disease does, what the life expectancy is, what the treatment is, but because you are in a state of shock, a lot of it goes over your head.
“Even though the consultant says, ‘If you need any questions answered, come to us,’ initially you will go on the internet . . . The parents’ response is to protect their kids as much as possible, so they want as much information as possible.”
“Even at the end, when they told us, ‘The treatment hasn’t worked, and there is absolutely nothing more we can do for Charlotte,’ we made a decision, in conjunction with the consultants, to say, ‘There is no point going any further with this treatment. It is quality of life that matters now.’ Sometimes the quality of life for the child gets lost in the treatment. Everybody bangs on so much about the treatment.”
Audrey says, “Charlotte had chemotherapy, surgery, radiation and immunotherapy. She did immunotherapy, which was a clinical trial; she was one of the first children to go on it here in Ireland, in Crumlin hospital. It is standard treatment now. That would have cost in the region of €500,000 at the time.”
Despite this treatment, “we knew from the scans that the neuroblastoma had gone hell for leather, and as parents when we saw the scans we just knew we had to bring her home.
“I know people give out about the HSE,” says Audrey, “but the care and treatment we received was fantastic. We would bring questions to the team looking after Charlotte. If you want to talk to them, they are available.
“Our conscience is clear. We can sleep peacefully at night, because we know we did our best. We are just heartbroken.”
