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

When you hear of cancer and leukaemia, you don’t immediately think of a five-year-old boy

David and Liz Wade with their sons Oisin, Daithi and Cillian  at their home in Mornington, Co Meath. Photograph: Alan Betson / The Irish Times

David and Liz Wade with their sons Oisin, Daithi and Cillian at their home in Mornington, Co Meath. Photograph: Alan Betson / The Irish Times

Tue, May 13, 2014, 12:30

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.

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