Our health experience: ‘Barretstown is as important as the chemotherapy we give cancer kids’

Barretstown, which helps seriously ill children cope with the mental side effects of cancer, is as important as the physical treatment they receive, according to leading childhood cancer specialist Prof Owen Smith of Our Lady’s Children’s Hospital in Crumlin, Dublin.

“It’s as important as the chemotherapy we give cancer kids in adolescence, it’s as important as the nursing care, the doctoring care; it is part and parcel equally a part of their treatment,” Smith says.

Barretstown offers therapeutic recreation programmes free of charge to help seriously ill children and their families heal through fun activities such as canoeing, horse riding and archery.

While research suggests children with cancer often consider physical treatment procedures more traumatic than cancer itself, Barretstown focuses on activities that help rebuild self-esteem, confidence and inner strength.

“If you are secure socially, you tend to come in for your drugs on a more timely fashion, but psychosocial wellbeing also affects the way you feel as an individual. It does have an impact on survival in these patients,” Smith explains.

“In the past we have purely concentrated on treatments: chemotherapy, radiotherapy, bone-marrow transplant, or whatever treatment you want to talk about. Unfortunately, that’s not the whole story,” he adds.

Barretstown has helped more than 30,000 seriously ill children and their families since it was founded by Hollywood actor Paul Newman in 1994. Among these are Glenn and Colette Kiernan, who attended the family camp at Barretstown in September 2011 after their seven-year-old daughter Ashleigh, who is now 12, was diagnosed with leukaemia.

A cancer diagnosis is for life, they agree.

“The chemo may deal with the physicality of cancer, but cancer leaves very deep, hidden scars and that’s where Barretstown comes into its full power,” says Colette.

Glenn echoes Colette’s words, saying the camp has been an essential part of Ashleigh’s healing process.

“When you come down here, no one gave a sugar whether she was bald because everybody was in the same position. Everybody knew and everybody accepted it. You’re not different: everybody is the same and everybody is just down here to have a good time,” Glenn says.

Therapeutic recreation has an enormous effect on a child’s confidence and self-esteem, according to Prof Peter J Kearney’s 2009 study at University College Cork.

When children are taken from society and placed with others in the same situation, they lower their defence mechanisms and become more open to the therapeutic recreation process.

“One of the things you have to realise is that what happens to children when they get cancer and leukaemia is that they get very difficult treatment, which actually isolates them from their peers,” says Kearney. “They can’t go to school because their immune is suppressed due to their treatment, so they’re very vulnerable to all sorts of infections and they have to lead, to some extent, a cocooned life. They feel socially excluded and not part of the world.”

Kearney explains how Barretstown, modelled on the Hole in the Wall camps in the US, started as a holiday for children but has since transformed into something much bigger.

“If you go back to Newman’s idea: he just wanted children who are seriously ill to have a holiday, just like their peers. He had no idea that it would have an extraordinary effect on them and then suddenly people realised that these kids . . . seemed to be completely changed for the better.

“The extraordinary thing is that it works. It wasn’t Newman’s idea that something would happen to these children; it was kind of a terrific unintended consequence,” says Kearney.

Barretstown celebrated its 20th anniversary last year while serving almost 2,200 children in its Co Kildare base. The charity hopes to increase its number of campers by 19 per cent during 2015 as it continues to expand its programmes.

See barretstown.org