“All he wanted to do was go to somebody else’s house for dinner”

The first time we were aware that something might be wrong with Cillian was Sunday, March 24th, 2013, and we were doing what we normally do.

It wasn’t raining so my wife, Liz, and I took our three boys – six-year-old Daithí, five-year-old Cillian and four-year-old Oisín – for a walk on the beach. Cillian was lagging behind and crying more than was usual. We decided to come home. We took his clothes off and found he was badly bruised and pale. My wife has a blood disorder – a lack of iron – so we assumed it might be something like that.

We made an appointment to bring him to the doctor on Monday morning and he had some blood tests done. From there, it just snowballed very quickly. They asked me to come in, and when I arrived the doctor gave us the news. Cillian had leukaemia.

We were shocked; and so indeed was the doctor because he hadn’t had to give that type of news before.

We brought Cillian straight to Our Lady of Lourdes Hospital in Drogheda and he was put into isolation. On the Tuesday morning he was brought by ambulance to Our Lady’s Children’s Hospital in Crumlin, where they started internal operations. He had a catheter inserted into his chest on the Wednesday because he was on so much medication.

Cillian calls it his “Freddie”. It is permanently there and obviously it restricts what he can do. There can be no swimming or contact sports, for example.

We are very protective of him and he is very protective of himself. He has had that there a year now and will have it for the remaining two and a half years of treatment he requires.

He was straight into a heavy programme of chemotherapy and steroids. It’s a hard treatment. He lost his hair twice and his weight increased from 15kg to 25kg on account of the steroids. It was aggressive treatment.

When his hair started to fall out, we were trying to decide what to do but we decided to leave it up to Cillian. After a while, he noticed the hair was on his bed, it was falling out, and it was annoying him.

I don’t have any hair myself – my wife cuts it with clippers – and he said: “Just cut it.” His little joke at the time was that we were now twins but that we wouldn’t be twins forever because his would grow back.

His hair has been growing steadily since Christmas and about three or four weeks ago I noticed his hair was sticking up at the back and I went to stick it down.

That was a big moment for me because for the first time in a year I could see his hair was messy. That was a significant milestone for us because he looked like a normal kid again.

Maintenance programme
Since February, we have moved into what is called a maintenance programme. He is still getting treatment every day but he gets it from home. We administer the chemotherapy through a shot every week and then orally each day.

He’s aware that he has leukaemia. We have read the books to him and he knows he has an illness, although probably not the severity of it.

He knows what is happening is going to make him better and, from that point of view, he is positive. What we do is try to avoid any situations where he will feel left out because of the catheter.

Recently he joined the local GAA club and he does skills training, but he knows that, for his own safety, he can’t play in the matches. He’s living with it and he’s not fighting against it.

Socially, he couldn’t mix with people at all in the beginning. If anyone had a sniffle or a cold, we would vet them before they came over because his immune system was so low.

His brothers were going out to see their pals and he was looking forward to when he could go and stay at someone’s house. He wasn’t able to do that. He’s been to a party but Liz went with him. We wouldn’t let him into an environment unless we knew everything about it.

The biggest problem we had was at Christmas when chickenpox came into the house. It was in the house for at least two months and most of it was him because he just couldn’t shake it. We were telling other people not to come and he knew it was because of him.

One of the things he had asked us regularly for was that he just wanted to go to someone else’s house for dinner. A simple thing, but he wasn’t able to do that.

Prof Owen Smith runs the leukaemia centre in St John’s ward in Crumlin and he is quite a logical person, which has helped us a great deal.

“Prof Smith” is how Cillian knows him. He knows that if Prof says it, it happens, whether he likes it or not.

The outlook is positive. Advancements in leukaemia have come on in leaps and bounds. Ten years ago, the success rate was about 50 per cent. Now, it’s somewhere between 85 and 90 per cent. Once it’s clear, there should be no lasting effects but there will be constant checkups.

Follow the protocol
I'm very confident Prof Smith is taking us in the right direction so our job is just to follow the protocol. We're absolutely indebted to the nurses and doctors in both Crumlin and Drogheda.

It’s been quite tough on my wife and me, but it has brought us closer. We have to do an awful lot on our own but we get a lot of help from other people too. Our social life is very limited but I don’t miss it. Our objective is to get our son back on the road, and that is the most important thing.

Cillian is taking part in a clinical trial with IPPOSI (the Irish Platform for Patients’ Organisations, Science and Industry), and the National Children’s Research Centre. They are launching age-appropriate information, in the form of literature and a website, clinicaltrials.ie, aimed at children who may be taking part in clinical trials. Any feedback we can give to the team that can help the next child coming along, we will happily provide.

In conversation with Colin Gleeson