OPEN-TOP buses and West End musicals may be on the checklist for every London tourist, but little Lily-Mae’s time in the city is no holiday.
This month the brave four year-old came to the capital to begin the next phase of ground-breaking treatment for the rare cancer she has been battling since last June.
“My partner Leighton and I both came to London as teenagers to train as ballet dancers,” her mother Judith Sibley, told the Irish Post.
“But now we are coming back here to save our daughter’s life. It is a very emotional experience.”
The Co. Galway family arrived in London last monthl and headed for University College Hospital London, where little Lily-Mae is currently undergoing Intensely Moderated Arc Radiotherapy (IMAT), to reduce the stage four neuroblastoma cancer in her abdomen.
Traditional radiotherapy was not an option for the extremely large tumour sites, as it would have caused significant damage to her kidney, liver and spine.
“IMAT delivers the same dosage as traditional radiotherapy,” Mrs Sibley explained.
“But the beam curves around her internal organs. So it will cause minimal damage to the surrounding healthy tissue and the maximum damage to the tumour sites, which is what we want.”
Lily-Mae’s brother, two-year-old Evan, has been staying with family in Derby while Lily-Mae is in hospital but has now joined his immediate family in London.
After three weeks in London, Lily-Mae will return to Ireland for the final six months of her treatment programme.
But although a brutal chemotherapy programme – 9 rounds in 45 days – and successive surgeries have freed the Irish youngster from seven neuroblastoma tumours to date, as well as the bone marrow and bone cancer that had spread throughout her body, she still faces significant hurdles.
“Her prognosis is very poor,” said Ms Sibley. “Lily-Mae has a 30 per cent chance of survival.”
She added: “The cancer has responded really well to treatment, which is the only thing that keeps me going, but unlike most cancers, neuroblastoma is very much a relapse cancer and 70 per cent of people with stage four neuroblastoma relapse.”
If that happens, Lily-Mae’s parents will be left with no option but to travel to mainland Europe or the US to take part in trial treatments at a cost of up to €500,000 (£423,800), which they are currently raising.
Thanks largely to donations from sales of the special charity single Tiny Dancer, a re-recording of the Elton John classic which topped Irish charts last December, the family has already raised €250,000.
“I hope I will never need that money and if I do not, I will give the cheque, which I raised to help save my daughter’s life, to the Neuroblastoma Society,” Ms Sibley added. “As even though 80 per cent of children diagnosed with cancer are in stage four and need much more aggressive treatment, only two per cent of money spend on cancer research goes to paediatric cancer.”