Support groupSylvia Thompson on how parents of children with cancer help each other
A new support group for parents of children with cancer has been formed by a number of parents who first met at the therapeutic recreational camps for sick children at Barretstown, Ballymore Eustace, Co Kildare.
"We realised that we got great support from other families we met in hospitals while our children were receiving treatment but then often had very little contact once the treatment was over," says Maria Molloy, a founder member of Teenage and Children's Cancer Uniting Parents (TCCUP)
Maria's son Declan (12), who was diagnosed with leukaemia four years ago, attended three camps at Barretstown and is now well on the road to recovery.
"We felt that there was no real appreciation of what you've been through and that a support group could help parents with their concerns and worries and show them how to get life back to how it should be after treatment ends," adds Paula O'Brien.
Her daughter Aoife was diagnosed with chronic myeloid leukaemia in 2000 and her personal journey through treatment is documented in TCCUP's first newsletter T-Leaves.
"Firm friendships were made as we propped each other up and poured our hearts out over endless cups of tea," writes the O'Brien family, hinting at how the support group acronym came into being.
"I think it is also helpful for new families to see how other families have coped by reading about their experiences. We will feature a different family's experience of coping with cancer in each biannual newsletter," explains O'Brien.
The first newsletter also includes information about the Children's Cancer Fund. Its most recent project was setting up Cuan Aiobheann, a home from home for families of children in treatment at Our Lady's Hospital, Crumlin.
As the original group of parents who set up TCCUP all met at the Barretstown Camps, the support group also promotes the valuable work done at Barretstown for children with cancer, their siblings and parents at the various week-long and weekend family camps.
"Barretstown restored Declan's childhood," says Maria Molloy. Terry Dignan, the programme director of Barretstown, who helped set up TCCUP, adds: "Parents of children with cancer are really very badly neglected. Having a child with cancer can be a very isolating experience as parents spend vast amounts of time in hospital and then the family is confined to home a lot.
"What we saw in our family programme was how people benefited hugely from being around other families and talking about things that the doctors and social workers simply didn't have the time to talk about."
TCCUP can be contacted at tel: 085 7227272 or email michelle@tccup.com