Our daughter Fiadh O’Connor is a bright, playful two year old girl from Wexford who has been fighting one of the most aggressive forms of children’s cancer since last Christmas.
In the space of one week, Fiadh went from being a healthy 20 month old with a swollen tummy, to being diagnosed with a 14cm cancerous tumour, neuroblastoma, that had already spread to her bones and lungs.
We now need to raise €375,000 to allow Fiadh access to a potentially life-saving treatment in New York.
Fiadh has had the best medical care and intensive treatment available in Ireland and she has bravely fought through many sick and worrying weeks of chemotherapy, surgeries, stem cell transplants and long hospital stays. Although she still has many months of treatment ahead, we hope and pray that Fiadh will be cancer free following her treatment under the amazing care of her oncology team in Crumlin.
The major worry for us and for Fiadh's doctors is the rare and aggressive nature of her disease, because there is a high risk of disease relapse. Unfortunately if this happens, Fiadh’s chances of survival are very low.
The drug trial in Memorial Sloan Kettering Cancer Centre, New York, may increase Fiadh’s chances of survival as it directly targets any remaining cancer cells in Fiadh's body. This treatment is not available in Ireland and because it’s still a trial, there is no funding available to get Fiadh there.
Our girl Fiadh loves dancing in the kitchen to Ed Sheeran's Galway Girl, eating her favourite ice cream, climbing anything she can and playing with her baby brother Páidí. She has already been through so much in her short life and we are all so proud of her - please join Future For Fiadh and help her kick cancer’s ass for good.
Any help you can give us here would be greatly appreciated. Please donate and share our campaign with family, friends and colleagues.
On the week before Christmas 2019, at one and a half years old, we noticed that Fiadh's tummy looked a little swollen and she seemed a little out of sorts.
Fiadh seemed otherwise well, so Laura booked an appointment with our GP for a check-up. Even in the waiting room, Fiadh looked like the happiest and healthiest child there, climbing on the chairs and saying hi to everyone. Little did we know how much our world was about to change.
Little Fiadh was referred to Wexford General Hospital for scans, where they found a large mass in her abdomen. She was transferred by ambulance to Crumlin Children’s Hospital in Dublin where she was diagnosed with a Stage 4 neuroblastoma tumour; a rare and aggressive childhood cancer. This tumour was the size of a melon at 14cm long and had already spread to her bones, bone marrow, lungs and was pressing on her liver and bowel.
Immediately, just 4 days before Christmas, little Fiadh started aggressive chemotherapy.
Santa delivered a little play kitchen to St. John’s oncology ward in Crumlin on Christmas Eve, which she loved but was just too sick to play with initially.
Neuroblastoma cancer is so rare; only 6 children in Ireland are diagnosed each year. From the beginning, we were told that her chances of survival were only 50:50 due to the aggressive nature of her cancer. Fiadh’s oncology doctors mapped out an aggressive treatment plan for Fiadh over an 18 month period. Despite this extensive treatment, relapse rates for this particular form of cancer are very high. The first treatment stage was to try to shrink the tumour through chemotherapy, so that it could be removed surgically.
For us as Fiadh’s parents, our world has completely stopped. Our amazing little Fiadh went from being a healthy one and a half year old child with a sudden swelling in her tummy, to a child with one of the rarest and most aggressive childhood cancers. We immediately moved to Crumlin to be with Fiadh for the initial stages of treatment, leaving behind her 12 week old brother Páidí with his Nanas, Grandads and Aunties.
For many weeks, Fiadh stayed in hospital getting the most intensive treatment that her tiny body could handle. She was in immeasurable pain; she stopped moving, eating and talking for periods of time and was on daily medication.
Fiadh is a tough cookie and has fought through every difficult stage so far. She has made it through 50 days of chemotherapy, 3 different surgeries, two stem cell transplants, more than 30 blood and platelet transfusions, over 12 weeks of total isolation in Crumlin hospital, with only one adult allowed to be with her at a time. Fiadh has spent over 150 days in hospital since January and she missed her baby brother Páidí each time she was away.
Fiadh’s grandad Jim was receiving palliative chemotherapy at the same time as Fiadh and they often spent days recuperating together. We are all so proud of Fiadh. She has taught us huge strength and courage through this heart-breaking time.
How Fiadh is now
At present, Fiadh is being fed through a tube as she has been every day since December. Fiadh needs 24 hour care and the coronavirus has made things even more difficult and complicated. She still has to go through 3 weeks of Radiotherapy with a general anaesthetic every day and then 6 months of Immunotherapy.
Fiadh has received excellent care from all the staff in Crumlin Hospital and St. Gabriel’s ward in Wexford. We will forever be grateful for the help, support and care they have shown to Fiadh and our family. Fiadh often amazed the nurses and doctors with her ability to climb and her mischievous and kind nature keeps us all smiling.
Fiadh’s doctors, nurses and family hope that Fiadh will be cancer free once her immunotherapy finishes next year. However, the major concern with this disease is how aggressive it is and should she relapse, Fiadh’s chances of survival are very low.
There is a cutting-edge cancer treatment aiming to decrease her chances of relapse currently on trial in Memorial Sloan Kettering Cancer Centre in New York. The treatment aims to target and kill any remaining cancer cells. The trial requires multiple trips to the hospital for tests and treatment over a two year period. As this drug is still in the trial stage, there is no available funding through her Health Insurance or the HSE.
And so Fiadh, and all her family are asking for your help to raise the money required for this life saving treatment. We need to get rid of this cancer once and for all.