Mark and Maria Fagan from Kildare had four children, Pablo, Gavin, Oscar and Daniel. Pablo died when he was just five days old after undergoing lifesaving heart surgery. Then in March 2016 the unthinkable happened. Daniel was diagnosed with Wilms Tumour age 5. Mark is sharing Daniel’s story to support our campaign to build a new therapeutic short break facility for children diagnosed with cancer and their families.
Life Changed Forever Once Again
“16 years ago, our first son, Pablo, died, only 5 days old after undergoing lifesaving heart surgery. We went on to have another 3 boys, Gavin, Oscar and Dani. Crumlin Hospital left us with amazing, yet very bitter memories and we understandably never wanted to return there. Every time we need to go to A&E, we made sure we went to one of the other Children’s hospitals, which thankfully were few and far between.
Back then as young inexperienced parents we thought we would never have to suffer another challenge in life such as losing our first but boy were we wrong.
One weekday, back in March 2016, our life as we knew it changed forever once again. Following some concerns Maria felt for Daniel who was now a very healthy and brazen 5 year old, we decided to take him to the GP to check out a slight bulge we noticed in his tummy and some pain he appeared to get whilst sleeping.
A few hours later I found myself looking into the grey face of an A&E Doctor in Tallaght whose eyes told me that we were about to embark on a journey that nobody should ever have to take. The next day, after being transferred to Crumlin, it was confirmed that Dani had cancer and that treatment would start immediately. We never wanted to be back in Crumlin but strangely we were never so grateful as to meet Dr Michael Capra and his extended team.
Daniel’s initial diagnosis although very serious and life threatening could have been far worse. Wilms is one of the more curable forms of childhood cancer with survival rates in the 90s, so we clung onto these positive stats for all our worth, consoling ourselves and choosing positivity and actually, to be honest, feeling pretty guilty when we met parents whose children had a far less statistical chance of a cure.
Cancer Refused to Stay Gone
I simply knew that he would beat this. We had everything on our side. Access to the best of medical science, an amazing support team in Crumlin, a supportive group of family friends and colleagues and not least, a very strong, determined and positive by nature little boy whose lust for life and learning was apparent when anyone met him.
Things, however, didn’t work out that way. Despite numerous apparently successful surgeries, chemo, radiotherapy and even stem cell treatment, this cancer just refused to stay gone.
Each time for a few weeks he appeared to be in remission following months of treatment. But then we were all too often informed of the awful news of the tumour’s return and ultimate progression to other parts of his body. So, life continued to ebb back and forth between desperate hope and black despair, until Dani died on April 3 rd 2019 in our arms at home.
Just a few hours before, he had been sitting up putting the finishing touches to a Lego Star Wars X wing fighter he had been building over a week or so.
A Journey With Marvellous Memoires
So, three years of a journey ended for him and a new everlasting way of life without him began for us on that day. That journey in all its awfulness, fear and sadness was also a journey sprinkled with marvellous memories that will sustain us for as long as we are alive.
A trip to LEGOLAND where he got to go on a roller-coaster for the first time, rides in Garda cars and on bikes and not least gaudy stretch limousines to the zoo were just some of the highlights. But the most incredible times were when we could be all together simply as a family, Dani, Gavin, Oscar, Maria and I. Times when we could all relax and enjoy the simple things.
Daisy Lodge – Where Every Wish Or Need is Looked After
We were introduced to Cancer Fund for Children’s Daisy Lodge a few years back via our selfless and driven Social Worker Kim. A place where literally every whim, wish or need is looked after. Their mission statement I imagine is simply to grant families who are suffering some respite, some time away from hospitals, white coats, needles and medicine. And that they surely do!
From the moment we arrived we were made to feel so welcome; the boys were made to feel special and Dani was made to feel normal! The lodge is a treat and the very cool bunk beds were the main highlight followed by the toy tractors in the garden that the lads turned into a racetrack in 2 minutes flat. Racing out there is their abiding memory and when we went back a second time this February it was the one thing, we had to recreate for Dani despite him being far weaker. For us the spa treatment was a gift from the Gods and helped us face another gruelling week ahead.
What was hugely inspiring was how the larger community in Newcastle also treated us: cafes, amusement centres, parks and ice cream parlours all buy into what Daisy Lodge stands for and offer their services free of charge. And that’s what is hugely positive about our awful journey… nobody wants to be exposed to the workings of a charity or a concerned community, but when you need it, you are so grateful it is there. To experience the best of human nature is humbling and inspiring but can only happen when it has the means to exist either through volunteers or sponsors.
A Dedicated Facility In Ireland
Dedicated teams providing tailored and discrete support to those who are in most need are by their nature small scale. A huge facility with 50 families in attendance would lose its magic and become just another institution, the last thing a very sick child wants or needs. This uniqueness of Daisy Lodge requires that there is another dedicated facility in Ireland that can reach out to far more families.
Strangely, we were fortunate in our misfortune that Dani was seen as a special case, but surely any family or child going through cancer is equally deserving of such an experience. The terrible reality is that unless we support these great causes, sick and dying children will have very limited access to experiences that can lift the spirit, gladden the heart and provide comfort and solace for many years to come to those left behind.
As any parent knows, making pleasant memories for their children is really the only reason we exist at all. Just don’t tell them that!