Lily-Mae
We brought her to the doctor expecting the diagnosis to be a kidney infection. Within two days we were told she had neuroblastoma…
On the 1st of June 2012, life as we knew it ended when our beautiful daughter, Lily-Mae was diagnosed with Stage IV neuroblastoma just 6 weeks after her 4th birthday. Lily-Mae hadn’t been particularly ill, she’d had a pain in her back for about two weeks, but it wasn’t a persistent pain and she went to school & her ballet class as normal. We brought her to the doctor expecting the diagnosis to be a kidney infection. Within two days we were told she had neuroblastoma, two days later, when transferred to our children’s oncology ward in Dublin, we were told that the cancer was stage IV.
We had had those two days in between diagnosis & staging to spend Googling & researching. My initial reaction to being told that she had stage IV neuroblastoma was complete hysteria & I was reluctant to treat her. That may sound shocking, but I felt that I hadn’t brought a child into this world to torture her for 18 months for her than to have a 70% chance of relapsing with no cure. It seemed archaic. How could my previously healthy little girl be dying? There must be some mistake, how could there be cancer all over her body? I asked the oncologist how long she would have if we were to take the palliative route? “3 to 5 weeks”, he replied. At the moment I realised that her dying simply couldn’t be considered & our little girl began the fight for her life.
What a battle it’s been & it has taken us to three different countries to try to get the very best treatment options for Lily-Mae. Like most children with neuroblastoma, the disease had spread everywhere, 100% bone marrow cancer, her entire skeleton also had cancer, from little toe to little finger & a tumour 13cm x 7cm x 6cm wrapped around her left adrenal gland.
9 different chemotherapy’s, surgery, a stem cell rescue, intensely moderated arc radio therapy in London followed by 6 months of antibody back in Ireland.
While our little girl fought for her life, she became ‘The Tiny Dancer’ in the Irish media. A choir of 200 voices & a host of Irelands most successful singers came together to record a version of Elton John’s, ‘Tiny Dancer’, to raise funds for treatment abroad for her. The song was endorsed by Elton himself, went straight to Number 1 in Ireland & charted in countries all over Europe. Our sweet girl captured the nations heart & her story has been told frequently in every newspaper, TV channel & radio station her in Ireland. Our daughter’s strength, courage, bravery & her sweet, sweet smile have inspired so many in their day to day lives.
When treatment finished here, we enrolled Lily-Mae on Dr Sholler’s DFMO trial, aiming to prevent relapse. It was the best decision we have made. How could we possibly sit in Ireland waiting for the cancer to return? Lily-Mae has had no side effects from DFMO & happily takes her tablets daily. For us, they offer one thing ‘Hope in a bottle’. Before this trial, there was nothing for children in remission, just a horrific fear for parents, afraid constantly of the monster cancer returning.
From that first two days of being afraid to fight, we have gone on to do everything we can to help our precious girl. To date she has had no side effects whatsoever from treatment. We have every faith in Dr Sholler’s DFMO trial & are beginning to believe that the nightmare of the past nearly two years could be coming to an end.
9 different chemotherapy’s, surgery, a stem cell rescue, intensely moderated arc radio therapy in London followed by 6 months of antibody back in Ireland.
While our little girl fought for her life, she became ‘The Tiny Dancer’ in the Irish media. A choir of 200 voices & a host of Irelands most successful singers came together to record a version of Elton John’s, ‘Tiny Dancer’, to raise funds for treatment abroad for her. The song was endorsed by Elton himself, went straight to Number 1 in Ireland & charted in countries all over Europe. Our sweet girl captured the nations heart & her story has been told frequently in every newspaper, TV channel & radio station her in Ireland. Our daughter’s strength, courage, bravery & her sweet, sweet smile have inspired so many in their day to day lives.
When treatment finished here, we enrolled Lily-Mae on Dr Sholler’s DFMO trial, aiming to prevent relapse. It was the best decision we have made. How could we possibly sit in Ireland waiting for the cancer to return? Lily-Mae has had no side effects from DFMO & happily takes her tablets daily. For us, they offer one thing ‘Hope in a bottle’. Before this trial, there was nothing for children in remission, just a horrific fear for parents, afraid constantly of the monster cancer returning.
From that first two days of being afraid to fight, we have gone on to do everything we can to help our precious girl. To date she has had no side effects whatsoever from treatment. We have every faith in Dr Sholler’s DFMO trial & are beginning to believe that the nightmare of the past nearly two years could be coming to an end.
