Despite all the debilitating treatment Niamh had to suffer we did have some amazing adventures during the time of her illness. In December 2011 we were invited to visit Lapland for the day which was kindly granted by the 'wish upon a star' foundation. Niamh described this trip as truly 'magical' and loved every minute of it, a wonderful, lasting memory that we would like to thank Pat and Joanne at the foundation for. It was not long after this happy event that our world turned upside down – yet again.
The week before Christmas 2011 Niamh suffered another horrific seizure following a visit to the hospital to check her blood count levels. We knew instantly that the 'monster' was back and were truly devastated when the hospital confirmed that the tumour had indeed returned. After lengthy discussions with the surgical and oncology teams at the hospital, the option to remove the tumour was offered but no more chemical treatment was available that would prove effective. We cannot describe how utterly devastating this news left us , the thought of our beautiful, kind , amazing daughter going into palliative care was just too much to bear. We decided to opt for the surgery which successfully removed the tumour but unfortunately left Niamh paralysed after she suffered a stroke during the operation. Still – Niamh did not let this disability affect her positive attitude and we watched her enthusiastically approach her physiotherapy with true stoicism and bravery. Despite the surgery we knew that without additional chemotherapy the cancer would return, after frantic attempts to secure alternative treatment not available at the NHS, the entire family searched around the globe for possible trials that might be suitable for Niamh. In February 2012, Niamh underwent a clinical trial in Leeds (UK) in a final bid to get rid of the cancer.
'The best day of her life'
One day in March 2012 Niamh experienced what she described as 'the best day of her life' when Amanda Turner secured a visit with Niamh's favourite band One Direction through the 'Ray of Sunshine' foundation. This occasion will be forever etched on our memories as we watched our little girl brimming with tears of happiness and joy before our very eyes. Little did we know then that this joy would be so short lived.
Niamh will never be forgotten
By the month of April 2012 we were told that despite the clinical trial the tumour had already returned. Niamh had previously said that she didn't want any more operations and we felt that while we did not want to stop fighting, we had to respect her wishes. We eventually realised that this cancer was a relentless monster that could not be beaten. Soon after Easter, Niamh started palliative care.
Bluebell Wood Children's Hospice is a very special place that took care of our little girl during the most horrific and upsetting time in our lives, we honestly do not know how we would have coped without the help of the people at this amazing, inspirational place. Shortly after Niamh's 9th Birthday in May 2012, after we had spent a truly wonderful time surrounded by Niamh's closest friends and family at Center Parcs, Niamh went into Bluebell Wood Hospice for her final days with us. Her declining health was quite rapid and it proved torturous as we watched Niamh courageously endure her terrible condition.
At 7:01 on July 6th 2012 Niamh died in our arms. Words cannot describe the pain of losing your child.
Niamh will never be forgotten. She was an incredible fighter who inspired so many people with her generous spirit and positive attitude. She was loved by all who met her. It is our expressed desire that we continue raising funds to try and eradicate this disease in honour of Niamh's courageous, fighting spirit. Our amazing family and friends have helped us so much along the way and we would like to thank them all for their kind help and support.
Our love and respect for Niamh will continue forever, until we are reunited once more.