Barretstown holds a special place in the hearts of the Moore family from Cabra West. For parents Louise and Stephen Moore, along with their two sons Alex (10) and Cal (6), the therapeutic family programme at Barretstown changed their way of thinking and reminded them that family time is precious and it should also be fun!
When Alex was aged seven, his mum Louise discovered a lump on the right-hand side of his tummy.
“We were getting ready for GAA training, pulling on a tight under-protective top when I felt the bulge. I knew it didn’t seem right but he went ahead and participated in training that day.
“There was no point in going to D Doc as they don’t do scans; we took him to Temple Street hospital, and following several scans, Alex was diagnosed with Wilm’s tumour.
“He might have been born with it, it grows on the kidney and grows as the organ grows. By this stage, Alex’s tumour was 15cm in length.”
Alex was a very normal boy – mad into playing GAA with St Plunkett’s on the Navan Road, and also was a member of Dingle United in Cabra – in fact, his dad manages the team!
“We used to call him Siesta back then,” said Louise. “As he used to go often for a nap, we thought it was because he was so active, but in fact, it was the tumour.”
Young Alex commenced chemotherapy immediately. After 8 weeks of chemotherapy, his tumour was removed, but the doctors discovered cancerous cells surrounding the kidney, resulting in a further 30-week course of treatment.
“I genuinely had a gut feeling that it would be serious the day we found the bulge. After several doctors has examined his scans, there was no time for tears, we held it together but my husband Stephen was distraught. He had lost dad in 2011 to cancer (aged 53) – the year Alex was born. Stephen was both devastated and terrified.
She continued: “Staff at Crumlin Hospital were amazing, the treatment kicked in straight away. He was off school for one full week only; the hospital staff advised everything was to be as normal as possible. Alex was to lead his regular life, attend sports etc and of course, go to St John Bosco National School on the Navan Road.
“Even after the treatment, his GAA team were playing in an U10 blitz on a Saturday, and Alex insisted on playing. The manager let him play in goal that day at Croke Park, he was so excited!
“Then it was back to school as normal, until he began to feel the impact of the chemotherapy, feeling sick, weak, weight and hair loss. Even his eye lashes fell off.”
For several months, the family was consumed by the cycle of medical appointments and after effects of the chemotherapy. Louise and Stephen were conscious of avoiding colds and ‘normal’ infections.
The Barretstown Dynamic
Alex was diagnosed with cancer in April 2019 and it was November 2019 when they got to Barretstown for a weekend break.
“As soon as we arrived at Barretstown, our outlook on everything changed,” said Louise. “We were there together, as a family, and for the first time since the diagnosis, we didn’t have a worry in the world that weekend!
“Barretstown gave Alex the boost and strength he needed to face those final four weeks of chemo. It recharged the whole family – to get over that finish line.”
Barretstown states: “When a child becomes seriously ill, it puts their childhood on pause, and can bring life to a halt for their whole family. Day to day life can be entirely disrupted, as hospital stays and gruelling treatments become everything, in the fight for survival. The joy of play and laughter fall to the wayside.”
Louise totally concurs with that sentiment: “We used to take his temperature every hour at one stage; if that was up at all, we had to wrap him in a blanket and off to Crumlin. He had been really sick for a week in September that year – so sick that he needed a blood transfusion and that’s when the visit to Barretstown was recommended.”
Louise was high in her praise of the care they received from the staff and team at St John’s Ward in Crumlin Hospital. “But the unit has to be pristine, everything is white and sterile because it has to be. The care was wonderful but it is a hospital ward dealing with serious illness for children,” she said.
“But when you arrive at Barretstown, it’s like walking into a world of colour and joy! Only a certain person can work at Barretstown; everything is orientated around the children and we embraced it, from the minute we got there.
“Cal would have been three years old and he loved it; they don’t treat the children with cancer any differently, every child is the same and our two had a ball. There was no mention of cancer, no limitations – Alex enjoyed theatre, horse riding, bow and arrows, and lots more.
“He is hoping to do the summer camp this year, without us! And please God, he can do the canoeing and the zip wire, etc. But it really was magical, every minute of it!”
That’s what the medically endorsed Therapeutic Recreation programmes at Barretstown are all about.
For Stephen, Louise, Alex and Cal, it was a vital turning time for the family.
“We had been so militant since April, with appointments, keeping Alex away from infections – then the Barretstown trip happened. It made me realise the important things, forget the bloody ironing, and go and sit on the floor and play with the kids.”
Alex is doing very well now, in Year Three of medical observations, and only requires two scans this year.
“So, we are very optimistic and looking forward to his continued recovery. Alex is a clever little fella; he said ‘Aren’t I lucky, it was only my kidney affected and I have another one, and wouldn’t need a transplant!’ ”
Appeal for Barretstown
Louise who works in Irish Life was delighted when the company chose Barretstown as the Charity of the Year for 2020 along with the LauraLynn Foundation – Ireland’s Children’s Hospice which gives such marvellous support to families of children with serious illness.
“Irish Life supported our many fundraising endeavours, from walks, jogs, head shaves, golf classics – we even had the Coronas playing on the final night! Irish Life was amazing, staff also put their Christmas party budget into the fund, and we raised €187, 000. Irish Life matched that amount so each organisation got €187, 000 each.
“Alex himself worked hard on the campaign and he did leaflet drops in the staff canteen/restaurant. We were so grateful for the support of Irish Life, indeed and family, friends, but also the wonderful support from St Plunket’s and Dingle United during Alex’s recovery, and for the wonderful care at Crumlin Hospital.
“But it’s for Barretstown now that we are making this appeal. We want to see other families enjoy the magic of Barretstown, to experience fun and joy for all the family. So please, log onto Alex’s Campaign and donate at: https://www.barretstown.org/events/alexs-story/
“You can donate any amount from as little as €5 upwards, no amount too little or too small. And so share please!!” concluded Louise.
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