WATCH: 'Tiny dancer' Lily-Mae celebrates two years officially cancer-free
"Two years cancer free, Neuroblastoma you won't beat me!"
Published 22/10/2015 | 09:48
Lily-Mae Morrison is now officially two years cancer-free.
Lily-Mae (7) is now two-years cancer free, thanks to the "wonderful doctors at Crumlin" and "the generosity of the Irish public", says her mum Judith Sibley.
"She was dancing around on Saturday singing 'two years cancer-free, Neuroblastoma you won't beat me'!"
Lily-Mae was diagnosed with stage four Neuroblastoma six weeks after her fourth birthday, and undertook nine different chemotherapy treatments over a twenty-one month period. 1 in 100,000 children in Ireland are effected by the rare form of cancer. She had "100% bone marrow cancer and 90% skeleton cancer", her mother Judith told Independent.ie.
She added that initial prognosis was "very poor" but that Lily-Mae "responded very well to treatment".
Lily-Mae became famous around the country as the "tiny dancer", after a single was released to raise funds for her treatment.
The single, produced by Steve Mackin, (the "most incredible human on earth", says Judith) raised over €80,000 towards the cost of her treatment. Her parents are both professional ballet dancers and their network of contacts held fundraisers around the world, from Holland to Australia to the UK.
She was declared to be in remission in October 2013 and the family chose to enroll in a clinical trial in Michigan. The trial is a clinical trial of oral drug DMFO, aimed at preventing relapse of Neuroblastoma.
"The problem with this disease is that it returns. There's a seventy percent relapse rate".
"Data currently on the trial is fantastic... there's been very low relapse rates so far".
Judith adds that Lily-Mae hasn't lost "her cuteness, her sweetness and her tenacity".
"She says 'I take so many tablets there's no way it will come back'!"
"To date, she has had no side effects from the treatment, everything about her is perfect".
"She'll be making her first communion next year because she wants to".
"She is doing ballet, performing arts, swimming and guitar lessons - she's making up for lost time. She says she wants to be a rock star when she grows up!"
Judith says that while Lily-Mae may not realise the seriousness of her diagnosis, "She knows she's really special".
"We try to shield her from the worst of it... but she knows she's really special, she knows she beat it. She takes everything in her stride".
"We went to London for radiotherapy and she has no memory of it. All she remembers is the Lion King, the zoo and all the nice things".
Lily-Mae is already looking forward to Christmas and Halloween, and the avid fan of musicals is to base her Halloween costume off Wicked The Musical.
"She's really excited for Halloween, she's got a green witch costume"
"She's also going through the catalogues picking out everything for Christmas and we have to tell her Santa only has so much money!"
Judith and her partner Leighton describe hitting the two-year milestone as a "massive relief".
"When your child is in treatment, you just get on with it and afterwards it hits you like a train. There's a lot of mental recovery, couples can deal with it differently. You no longer sweat the small stuff - nobody gets stressed in here about getting to school on time! It really puts things into perspective".
"We are delighted but like every cancer parent, we live from scan to scan. We call it scanxiety!"
Judith revealed that the clinical trial will probably end up costing around €150,000 by it's end.
Judith is working with the Childhood Cancer Foundation to raise awareness of childhood cancers. The organisation is just under two years old and is funding the 'play specialist' in St. John's Ward. She is also on the board of 'Hand in Hand', which offers support to families of children with cancer, like laundry, cleaning and delivered meals. "Things you really need when you're in that situation", Judith adds.
The Morrisons will be involved in the 'Light Up Gold' campaign this Christmas to further raise awareness.
"There are 230 diagnosed every year but until my child got cancer I never gave it a thought".
"I know I am blessed to have two children".