By her mum Niamh
Saoirse was amazing. She was the youngest of our three girls and a real mix of both her big sisters, Alannah and Leah. She was confident, brave, kind and a bit of a divil. We were so happy. Saoirse couldn’t wait to start school, she wanted to be just like her big sisters.
It’s like we’ve had two lives – one before diagnosis and one after. In August 2019, a few days before Saoirse was due to start junior infants she was diagnosed with acute lymphoblastic leukaemia (ALL). She was four and a half.
Saoirse was wise beyond her years. The kids grow up so quickly when they are diagnosed, and she really found her voice and taught us all so much.
She loved her Beads of Courage; she could make a trail from the kitchen to the hall door with them and she was so proud of them and loved showing them off. We would do the Beads to lift her spirits in hospital and it kept us all going. It’s such a visual representation and it really helps people to understand what they’re going through.
Saoirse went through months of intense chemo, spending most of that time as an inpatient. We calculated that we spent 300 out of 365 nights in Crumlin in one year. Just as Saoirse was about to start the maintenance phase of her treatment, where we hoped things would get easier, she relapsed.
Saoirse went on to have a bone marrow transplant in October 2020. Both of her sisters were tested, and Alannah was a perfect match so she bravely agreed to donate her bone marrow. Saoirse spent eight weeks in the transplant unit until she was strong enough to come home. It was the night of the Toy Show and she was so happy to be reunited with her sisters, who weren’t allowed into the transplant unit.
Covid protected us in a sense but being in hospital on our own (one parent at a time) was really tricky. The amazing staff really became part of my support system, and it was a huge loss after Saoirse died.
Saoirse was doing so well after her transplant; she started school the following year and was loving it. We celebrated her “re-birthday” – her one-year transplant anniversary in October 2021 with a trip to Tayto Park and had the best day.
In early December Saoirse developed a cough and a high temperature, initially we thought it was pneumonia but unfortunately on the 10th December it was confirmed that the cancer was back and this time we were out of options.
We asked how much time she had left and we were told to celebrate Christmas early. We discussed giving more chemo but it was only to buy her a short amount of time and she had been through so much, she was so brave. We made the decision to bring her home. I’m so grateful that Steve and myself were on the same page about it as it can be such a difficult decision to make.
We had seven days at home with Saoirse and we made memories that we will cherish forever. She got a very special ride home form Crumlin with Bumbleance and she felt so important. Make a Wish organised a visit from Santa, a Garda drive by and music from the Little Blue Heroes. Laura Lynn spent a morning with Saoirse and her sisters playing music and singing. Her teacher came by and gave Saoirse the class mascot, which I think was the highlight for her!
When I look back now, I don’t know how we did it or how we kept it all together but I’m so glad we did and that we found the strength to be strong and make Saoirse feel so safe and loved.
I’m so grateful that we took her home for the last part of her journey. I was nervous about it, nervous about bringing in the hospice team because we didn’t know them, but we were minded every step of the way.
Saoirse was still up and talking on the day she passed away. I was in bed with Saoirse when the night nurse woke me to say that her breathing had changed, and she just went peacefully with all of us there beside her.
Our world has been completely changed forever but we just take it one day at a time. We are taking all the help we can, we are coping and I’m proud of that. We gave Saoirse so much love, we were always with her, and she was protected as much as possible while she was sick. Saoirse was so very loved and is missed every single day.