From Fireman Sam to chemotherapy, Charlie gets a short but sweet Christmas break
Three-year-old Charlie Scully is undergoing intensive treatment for leukaemia
Charlie Scully (left) with his brother Tom, mother Imelda and father Jim. Picture: Patrick Browne
By some benign coincidence, and barring mishap, over the next few days Charlie Scully will get to enjoy his own version of the Christmas lull.
At his home in Co Waterford Charlie will have a pretty routine Christmas, with a lot of Fireman Sam presents, and his family around him. Then on Friday, December 27th, it’s back to business as usual, when Charlie makes his fortnightly visit to Dublin for his chemotherapy.
“It’s just the page we’re on, the chemotherapy is not as intense as the induction phase or the consolidation phase,” says Charlie’s mother, Imelda Scully. “We’re on what they call in-term maintenance at the moment, which is a softer phase, and it’s just fallen at Christmas.”
On September 19th Charlie, who will be four in February, was diagnosed with acute lymphoblastic leukaemia.
Down syndrome children like Charlie have a 30-fold greater chance of developing acute lymphoblastic leukaemia than average children. Down syndrome children make up 3 per cent of all paediatric cases of it. “With a Down syndrome child, always look for leukaemia, that’s what I tell the students,” says Owen Smith, professor of haematology at Crumlin children’s hospital .
Charlie’s progress through our maligned medical system was rapid. “Nothing but the royal treatment,”
She cannot praise the staff at Waterford Regional Hospital in Ardkeen highly enough. “The nurses are wonderful, although they’re short-staffed. You can see they’re under terrible pressure.”
As Imelda talks, in the big kitchen of the Scullys’ Waterford home, the bottle of the chemotherapy liquid, which she gives Charlie daily, stands on the island unit. Charlie is watching Fireman Sam cartoons, and then Curious George cartoons. “Thank God for Sky Plus,” says Imelda.
On the Monday she brought Charlie to their local GP; on the Friday Charlie started chemotherapy at Crumlin children’s hospital. “Talk about waking up with a crowd around you,” says Imelda of her experience on St John’s ward, as the medical team gathered at Charlie’s bed.
Now Charlie is reading the newspaper, licking his finger with adult authority as he turns each page. Imelda points out that he is licking the finger on one hand, but actually turning the pages of the newspaper with the other.
Charlie identifies Santa in the newspaper. “Ho, ho, ho,” he says, with his hand to his chin to denote a beard. Charlie uses sign language a lot. “He recognises Santa but he’s terrified of Santa,” says Imelda.
“It was very frightening,” she says of his diagnosis. “But I feel I didn’t get it in one blow.”
She is sustained by Charlie’s cheerfulness and charm, as well as the support she has experienced. “A group of about six women take it in turns to bring Charlie and me up to Crumlin. It’s an early start. We have to be there for half seven, so my friends get up at five. My brother-in-law will drive us this Friday. Charlie usually wakes up at Newland’s Cross. It’s the fasting that’s the hard part.”