Fingers crossed for Tiny Dancer

Lily-Mae, her brother Evan, 3, and parents Judith Sibley and Leighton Morrison, will travel to the Helen de Vos hospital, near Michigan, for three days to begin the two-year treatment.

The phase II clinical trial, called DFMO, requires a full nuclear body scan and taking six tablets a day for three days at a time, four times a year.

The aim of the DFMO drug is to target a key protein called ornithine decarboxylase (ODC), which makes polyamine molecules that contribute to tumour development.

Judith has met the physician and scientist behind the study twice at two international childhood cancer conferences. Dr Giselle Sholler is the chair for the The Neuroblastoma and Medulloblastoma Translational Research Consortium.

“I was very taken by her, she’s a mum of two girls herself, she’s very cutting edge. Her aim is to find a cure for neuroblastoma. I’ve spoken to many parents whose children are on it and they feel it is the best possible option for their children. It’s early days, it’s only been going for a year but so far there are no side-effects,” revealed Judith.

“This is on my own initiative, it’s not through my oncologist in Crumlin. Lily-Mae’s team in Crumlin Hospital have been absolutely amazing, they have brought her into remission. But as a parent I feel I have to do more to keep the cancer at bay.

“On our Facebook we have 600 parents whose children have Neuroblastoma. We know there are 30 kids on this trial at the minute and one or two have relapsed. That’s very different to the 70% relapse rate for neuroblastoma, which is the biggest problem with this cancer.”

The trial costs €100,000 and is largely financed by parents in the US whose children have died from the rare but aggressive childhood cancer. The family has raised €420,000 from the public, mainly through the release of the Tiny Dancer CD last Christmas, which they are using to take part in the treatment.

For more on this story, see the Galway City Tribune.