When Lily-Mae Morrisson celebrates her ninth birthday with her brother Evan at the weekend there will be no-one happier than her parents Judith and Leighton.
During their darkest days they feared their bright and bubbly little girl would never reach this important milestone.
Lily-Mae, who is in second class and will make her Holy Communion on May 27, was diagnosed almost five years ago on June 1 2012 with stage four of the very rare childhood cancer, neuroblastoma, which mostly affects babies and young children under five years.
She has spent four of the five years since her diagnosis having treatment for the condition, which has a 30 per cent survival rate. Initially, she presented with a tumour on her left adrenal gland, 100 per cent bone marrow cancer and 90 per cent skeletal cancer. "She literally had tumours from her head to her toes," says her mother, Judith Sibley, who is originally from Dublin but now lives in Claregalway.
Lily-Mae spent 19 months in Our Lady's Children's Hospital in Crumlin, Ireland's largest paediatric hospital, before going to London and the United States for treatment. All of her treatments were clinical trials - the final one, which took place over two years in Michigan and required her to travel to America four times a year, concluded 16 months ago. The phase two clinical trial, called DFMO, was aimed at preventing a relapse. This drug therapy involved her taking six tablets a day, three in the morning and three at night, for two years. Lily-Mae was the first European child on this trial programme and the 32nd worldwide.
She returned to Michigan in January for a reassessment and her mother got "wonderful" news. Her scans were perfect, she says.
The little girl's parents, Judith and Leighton Morrisson, both ballet dancers, always have "scan anxiety" beforehand," says Judith. "There is a very high relapse rate but we are very, very lucky because she is cancer-clear a long time. She is a happy, healthy child. You would never know to look at her that she was very sick for a few years. It took her until last summer to get the colour back in her cheeks, the pink has come back to her lips now."
Judith, who set up Youth Ballet West, a pre-professional youth ballet company in Galway in 2007 with her sister Phyllis Hayes, and also runs her own studio - Shannon Dance Academy in Athlone - says Lily-Mae, who plays the guitar and piano and does ballet, is looking forward to her birthday celebrations. While she was nine on Tuesday she is waiting until the weekend to have a joint birthday party with her brother Evan who will be seven on Thursday next.
Lily-Mae, who has defied the odds to become a "medical miracle" is really looking forward to her birthday celebrations, says her mum. "Her story is a story of hope. We have learned from her illness not to sweat the small stuff."
