Bláthnaid Foley Trust - supporting research into Ewing's Sarcoma and Bone Cancer

Other Stories

Connor’s Tribute
Auntie Sinéad’s Story
Auntie Joanne’s Story
Shanes Story
Ross Nugent's Story

Connor’s Tribute

Bláthnaid Foley was my sister. She was diagnosed with Cancer at the tender age of 12. In my head I was saying ‘She’ll be better in about a year’. Now I know that wasn’t to be. Two months after she was diagnosed my Granny died. It left me, but more importantly, Bláthnaid and my Mum heartbroken. Shortly after that Bláthnaid's condition started to improve and we all knew that Granny was helping her. One agonising year later Bláthnaid passed away. The death of my sister has left me a broken boy and I will be a broken man. She was so extraordinary that her life and death will echo through my soul and my family’s soul for eternity.

Connor Foley age 11

Auntie Sinéad’s Story

Remember what it was like to be 12 years old?. I try and remember what my perspective on life was then, in a nutshell I think two words would sum it up – happy and carefree – all this facilitated by the underlying excitement of what my future had in store for me. Imagine what it would be like to be 12 and have to battle the devastating disease of Ewings Sarcoma with all the pain, suffering, humiliation and despair it brings. Imagine facing death when you have not had the chance to live life, imagine one of your hopes to be that you will reach the age of 26 instead of who will ask you to dance and the next disco?

That is what by beautiful niece Blathnaid Foley had to do, and this she did with an inner strength and dignity that still astounds me. I consider myself the luckiest aunt in the world having loved and been loved by this beautiful spirit that was our Blathnaid. In the 17 months from her diagnosis to her tragic premature death, I shared moments of real hope and sadly real devastation with her and her family. I remember being in the small side room in Crumlin with my sister when she was told her 12 year old daughter had Cancer. Hearing the diagnosis and the distinct absence of the word ‘cure’ from the conversation was incredible, you find a part of you not believing what is happening – after all how can a 12 year old child have Cancer? This was one of those situations that you might hear of or read about in a magazine and thank God that it is not you. But this time there was no escape.

Spring time 2005 was the start of a gruelling program of chemo. for Blathnaid. She faced the effects of her treatment with a steely determination to make it work for her, she dealt with the humiliation of its effects with dignity and strength – the hair loss, and later the effects the radiation treatment and steroids. Yet all through this time she was a source of comfort to us all, to me – even when I was trying to provide support for her during my many visits to Crumlin. I cherish the memories of our time together, the touch of her skinny little hands on mine, the warmth of her embrace, the look of sheer love and gratitude when we sat down to make an attempt to eat our ‘special’ lunch of fillet steak, pepper sauce, fried onions and baby potatoes and mixed vegetables, made in the kitchen of St. Johns ward. I remember the tears when I had to leave, the text messages to say good night. In August 2006, weeks before her death, I asked Blathnaid did she ever think ‘why me?’ her answer was a quiet whisper ‘No’. In a word she summarised how selfless she was, not angry at life – still embracing it to the end, which came all too cruelly in the morning of Saturday 16th September 2006.

From my perspective, Ewing’s Sarcoma has robbed me of the chance to get to know my beautiful niece as a teenager, listen to her experiences of first boyfriends and nights out. I will not be able to go to her graduation, her wedding, go shopping. My children will not have her in their lives. I will no longer hear the sound of her voice, her laughter; see the glint of mischief in her eyes. But I will never forget.

We must not let this disease that attacked our Blathnaid so aggressively without warning, continue to devastate other children and their families now and in the future. Through research into the causes and treatment of this disease, we must find a cure so that children, like Blathnaid, will not have to dream of reaching the age of 26. For her, and all children who have been struck down so cruelly by this disease, we must continue to celebrate their short lives in the hope that one day something positive can come out of this terrible suffering.

Auntie Joanne’s Story

Looking back at my large family, life was good and healthy then a terrible darkness came in the form of Ewings Sarcoma which my niece Blathnaid was diagnosed with on 25th April 2005. Up to this point in my life I can honestly say I had never heard of Ewings Sarcoma let alone what a devastating cancer it can be. I remember my very first visit to Crumlin Children’s Hospital having just arrived from London, the slope of the corridor leading around the hospital then going into St John’s ward and thinking all the time they we will find a cure and be strong for them, then seeing little brave Blathnaid so sick but trying so hard to get better.

There are so many great memories of the last 13 years and then so many sad memories of the last 17 months to 16th September 2006.

Blathnaid was the second child for Fiona and John. I remember seeing her for the first time in Hospital just after she was born, she was tiny and lovely. Then wind on the clock a couple of years and she had bouncy curly light brown hair, impish smile and beautiful eyes. She loved singing and drama. We watched many a happy show stopping Foley Family all singing/dancing production of course all managed by Blathnaid!!

I remember the little hand in mine when she had talked me into taking the new puppy (at Mum and Dad’s house St Evin) in a pram for a walk on St Steven’s day in the snow!! Then my children came along and I noticed how kind and good she was with them, always fun and loving. One of my last memories of Blathnaid before cancer was watching her sing with her Scoil Ursula choir in the Arcade and the joys of Christmas in the air.

Then the cancer was diagnosed and everything in my world went upside down. Within weeks of Blathnaid being diagnosed we lost our wonderful Mother very suddenly. This was especially hard for Fiona as she was in Crumlin Hospital caring for Blathnaid during her another session of chemotherapy when she received a call to come home quickly to say goodbye to Mum.

Over the next couple of months a bit of hope starting creeping in but it was all taken away and the prognosis just got worse.

I have such admiration for the way Blathnaid dealt with everything for example just think ….
Do you remember when you were a child and how you would avoid anything to be the odd one out? Well try and imagine for just one moment what it must have been like for Blathnaid, a beautiful 12 year old girl with her lovely long hair and thick eye lashes then in a few short weeks having to deal with people staring at her, some with open mouths and others bumping into each other and often you could hear them talking about her...... as if she did not have to suffer enough with the medical side of things… Can you imagine having to face the fear of death and leaving your beloved Mother and Father at the age of 13?? And facing all the horrific pain that comes with this disease?? Blathnaid had to face all this and never complained she just had such ability to love and never question why me?? Her spirit of bravery, dignity and love must live on.

I was truly privileged to be her aunt even though it was for a very short time and to be a small part of her and her family’s journey.
Please support her memory through her charitable trust (Blathnaid Foley Cancer Memorial Trust, Sort Code: 90 54 40 Account Number 48512494 Bank of Ireland, Sligo) so that Blathnaid can keep giving even in her death as a lasting legacy so that some day a child like Blathnaid will not have to part from their family and cause such untold grief & suffering.

I will love you always little Blathnaid.
Aunty Joanne

Shanes Story

Shane was born on the 6th July, my first born. I was so thrilled to have a boy. He grew up like any normal child, he went to school in Catherdavin even though we lived in Moyross. He made many friends in school and where he lived. He loved play station, Manchester United was his favourite team, and he also followed Celtic. He was involved in both communities as he grew older, he went to summer camp and was part of the football team in Moyross, and he was active in the church in Catherdavin also in the club for teenagers. He went to Nissan secondary school and continued to be the school clown always laughing and joking with his friends.

As I was separated Shane became the man of the house. We often fought like husband and wife getting into arguments about his sister Ciara, he was like her dad caring for her when I was unable to as I was going through a tough time during my separation, it was Shane who pulled me through those hard times. He was so mature for his age of 12 yrs at the time. I felt so guilty leaving such responsibility on him, but also knew in my heart it gave him such pleasure in doing the manly things.

On the 13th June Shane was diagnosed with Ewings Sacorma, he took it so well looking straight at the doctor he asked was he going to die. He was just coming up to his thirteenth birthday in July 2001, I was devasted. I couldn’t take it in, my nephew had cancer at the tender age of 11 ½ yrs. Outside the hospital Shane consoled his dad, the roles become reversed, and I looked at his dad as if he was the child and Shane the parent. He wrapped his arms around me telling me I am going to be ok Mom.

He had strong faith in God, I am not saying that he didn’t have doubts he did. He would often wonder where God is. How can God allow this to happen, he wasn’t so much worried about himself he couldn’t take it in when he saw children younger than himself with cancer. I asked him one day “why aren’t you angry or why didn’t you feel sorry for yourself “ and he replied, “ I don’t feel sorry for myself I lived my life pointing to the younger children, they haven’t Mom, they will never get to do things I got to do”. I felt so ashamed of myself because I was angry and I also felt sorry for myself.

Shane got intensive treatment but the cancer spread through his delicate body, it had no mercy, it travelled through his body so aggressively. People prayed night and day for Shane, people even across the world were praying for him. On the 9th July we went to Fanore to a charismatic conference. We were very involved in prayer groups, Shane looked frail and weak but his spirit was strong. He spoke words of wisdom that blew my mind away. When I told him that he might die he took it very well and accepted it so well. It was as if he knew all the time and nearly in a hurry to get to heaven. He was reading his bible and praying in his bedroom the night we spoke about the possibility about him dying. He told me that night this man Jesus is the greatest man ever, that his love for us was so great. I would love to meet him one day; he said it with such conviction.

I felt Shane was ready to go and meet this wonder man Jesus that died for Shane. Shane strengthened my faith, I did resent Shane for being so positive, so accepting and so in love with God. I felt you can’t leave me Shane not intentionally. We loved each other so much we even argued over who loved who more, again Shane won the argument it was settled Shane loved me more.

Shane never made it home from Fanore, he went to Milford Hospice in Limerick. They cared for him so well, he continued to keep up his sense of humour still smiling, joking and laughing with everyone, He died at 4.55am Friday morning on the 19th July 2002 just after his Fourteenth birthday 6th July. My hope is to raise awareness about this cancer, also some money for research, I do thank God for Shane and the opportunity to help others. I know deep down Shane, would have wanted me to help others because when he was alive that is what he did, he cared for others. Thank you my love for teaching me so much and sharing your short life with me, Ciara and your dad.

By Joan Duffy, Shane’s mother.

Ross Nugent’s Story By His Mum Sandra

“Having come across the Bláthnaid Foley Trust website I found the parallel between Bláthnaid and my son Ross incredible. You suggested that we might write Ross's story for the website. I believe it will help as, on our journey through this nightmare, we had little or no information on Ewing’s 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, mother of Ross.

Ross Nugent Our beautiful son Ross was a very positive, dignified and brave young man. He fought a difficult battle and lost to an insidious illness called Ewing’s Sarcoma, a name I never heard before but one I will never forget.

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'

Why Early Detection is Important

Childhood cancers spread very rapidly and early detection can save a life.
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