Having come across Bláthnaid's website I found the parallel between Bláthnaid and Ross incredible. You suggested that we might write Ross's story for the Bone Cancer Research Trust website. I believe it will help as, on our journey through this nightmare, we had little or no information on Ewing Sarcoma or about families affected by it. I felt isolated as if we were alone in this experience but got a degree of reassurance when I read Bláthnaid's story. I thank you for that."
Sandra Nugent (Ross' mother)
Ross’s passions included art, music and dance. He was extremely popular with all those with whom he came into contact. He had many friends and they loved to be around him. He was very much a people's person who loved to make people laugh and he saw the positives in everything and everyone.
Ross told us of back pain in early September 2009 and, on the GP's advice, Ross went on a course of physiotherapy. Initially, Ross got a little relief. During this time, Ross was involved in various projects in his role as Assistant Head Boy in Malahide Community School. He insisted on painting backdrops for the school's variety show despite agonising back pain. He never wanted to let people down and even performed on stage. When he came home from the show he would take to the couch with a very hot water bottle and pain killers. This was to become the new routine for weeks to come. He was losing weight and this sent alarm bells. The pain increased and the weight-loss continued.
The GP sent Ross for an x-ray and an MRI scan, both of which were clear. His physiotherapy was increased from once to twice a week. This provided no relief.
Our frustration at seeing our son in such pain (and never complaining) was heartbreaking.
We took it in our own hands and contacted a neurologist whom we had met socially many years ago. It is amazing how parents and family act instinctively and do what is right in such circumstances. We put a letter in his home letterbox just before Christmas. He telephoned two days later and, to our amazement, offered to call to the house, which he did the following Sunday. He was concerned about Ross's weight loss and pain and arranged for us to bring Ross in to A&E in Beaumont two days later.
Over the following days, a series of tests were carried out and on the 6th of January 2010, we were given the awful news of this horrendous insidious disease called Ewing's Sarcoma. Words cannot describe the shock and horror that gripped us that night. Ross, being Ross, said he was going to beat this illness. He even asked us to take photographs of various procedures for him to lecture in schools on "Teenagers with Cancer" once he recovered.
Don and I called Ross's sister, Emma, who, although living and working in England at the time had been in touch with Ross, her best friend, on a daily basis. We told Emma the awful news.
Despite the snow and obstacles in her way with airports closed, Emma drove to the ferry and was back within twenty four hours of that very difficult phone call. Over the coming months, Emma rarely left Ross's bedside.
Ross was to endure eight treatments of chemotherapy. He gradually put on the weight that he had lost and, although he hated needles more than anything, he just got on with it. He shaved his head before he lost his hair to the treatment. Emma's boyfriend duly did the same which made him smile. He continued to push himself to go to friends' eighteenth birthday parties, always preparing their music on their iPods for the occasion. He helped choose the music for the graduation and debs nights.
Half way through the treatment programme, Ross requested a "half-way" party. Needless to say, it would be a hat party! The morning of the party, I noticed redness around his left eye. He reluctantly went to the GP where we were told he had an infection in his eye called cellulitus. Because of this and also because his temperature was up to 38.6, we were advised to bring Ross to A&E. On the car journey, he pleaded with us not to bring him as he was so looking forward to his party and being with his friends.
It was from here on, with the antibiotics disagreeing with him and the constant vomiting that Ross's chemotherapy became more and more delayed.
This was a dark time for us all. Every day, there were more and more tests and several lumbar punctures, MRI scans, CT scans which were all showing clear. Clearly, however, they were not. It was during this time that Ross got double vision and had to wear an eye patch. Sadly, he was unable to enjoy his favourite pastime, art. He had great difficulty reading and even watching TV. The pain killers were increased and all he wanted to do was sleep. Even at this difficult time, he held his dignity and positivity.
By now, we were staying overnight as he was getting very weak. They decided to give Ross 5 sessions of radiotherapy for pain in Saint Luke's Hospital in Raheny. He had to be heavily sedated as any bump on the road would cause such pain. As a mother this broke my heart, but still kept a smile on my face although inside i was screaming. The pain did ease but before our very eyes he was slipping away, losing his fight to this horrible illness, Ewing's Sarcoma. On Saturday morning, the 15th of May 2010 at 6.55 am, our beautiful son Ross passed away peacefully with all of us beside him. At the time I kept saying: no more pain. Now, 4 months on, I'm asking why he was in such pain in the first place... Somehow I know I'm not going to get that answer.
Ross's school in Malahide awarded the Roll of Honour to Ross, a decision they made long before they even knew how ill Ross was. They have been tremendously supportive. Ross's friends have continued to call to see us as they know Ross's friends are our friends. Many of them have remembered Ross with small tattoos with individual designs, many of which were taken from Ross's pieces of art. He himself had one tattoo which simply read "FAITH". We have since incorporated one of Ross's drawings as the logo for the Ross Nugent Foundation.
I wrote this poem many many years ago when I was overjoyed with happiness and bursting with pride for my 2 beautiful children Emma and Ross. Little did I know then how fragile life truly is!
'Children are not ours to keep,
They are on loan.
We give birth, love, nurture and cherish them
Guide and teach them through life's paths
And then they slip through our hands and grow as individuals.
It's a hard lesson but one is blessed to learn this
To be given the opportunity, although not always easy... but so so worth it.
They break our hearts
They soothe our souls
They give us such joy
I AM BLESSED'