Give Seriously ill Children their Childhood Back

Dear friend,

Our journey started in the spring of 2019. It was 9.30am on a chilly Saturday morning, and Alex was rushing to get out the door to GAA. I was giving him a hand putting on his thermal top when I noticed he’d a bit of a swollen side. And I thought hang on, that’s not right. So, I decided to bring him to hospital later that day for a scan. I told myself it was just in case. A precaution. But before I left, I packed an overnight bag. I guess I just knew it in my gut – call it a mother’s instinct – that this was something serious. That night, the doctors broke the news. Alex had something called a Wilms tumour on his kidney. It was something he would have been born with. But it had now grown so large, that it had pushed his liver up and kidney out, which is why we could see the swelling for the first time. It was terrifying.

I just swung into action. My child needed me. Within weeks he’d lost every inch of hair on his body. Even his eyelashes and brows. After 8 weeks of chemo, they were able to operate. They removed his kidney and a tumour measuring 15 x 8cm. But, when they removed it, they saw there were other cancer cells surrounding it. And so, he’d to have another gruelling 30 weeks of chemo. Every single Tuesday, he’d be in. He was always on the slim side, but he lost so much weight. And it was the day after treatments that were always the toughest. I remember him, this tiny little ball, curled up on the couch in the foetal position. Not able to eat, barely able to drink. 

The biggest advice they give you is to try and keep everything as normal as possible. So, by Thursdays when the worst was over, he’d put on his uniform and go back to school with his younger brother Cal, when he could. He’s such a great boy – very intelligent and funny. And he never lost that. He even kept up going to his GAA training as much as possible. But towards the end of his chemo, the treatments were really taking their toll. And he did become very frail. Infection was the biggest worry. We were constantly monitoring him. If there was the tiniest rise in his temperature, we were straight into Crumlin. It didn’t matter if it was 3am in the middle of the night. Myself and my husband had a bag constantly packed in the boot of the car, we got so used to the over and back. One of us would go with him, the other would stay with Cal. Then we might swap. Often, I’d go straight from all night in Crumlin, to work. Shower at our gym in the office, and then sit at my desk at 9am and do my day’s work. This was life for months and months. It’s only looking back now, that I can see how much it took out of all of us. How exhausted and running on empty everyone was. At the time we were all too busy just trying to survive. Running on autopilot. Focused on protecting Alex.

And then we went to Barretstown. It was just the most incredible, magical experience. In just a few days, it changed our outlook on everything. From favourite foods to favourite hobbies – they adapted our weekend to fit in all the things the boys’ love. We went horse riding, had loads of group play and even myself and my husband got a break in the evenings.

Cal, my four-year-old son, was included and looked after the whole time as well. Which was so important.The journey has been so hard on him too. He’s had to miss out on so much of our attention. It was amazing just to all be together, as a family. And for the first time since the diagnosis, to feel like we didn’t have a worry in the world. It’s funny – it’s a camp for sick children, but ‘cancer’ was not mentioned once that whole weekend. It gave Alex the boost and strength he needed to face those final 4 weeks of chemo. It recharged all of us – to get over that finish line. To hear our little boy ring that bell on his last day of chemo.

People have been so good to us on our journey. From neighbours well wishes and thoughts, to visits from local Fire Brigade and Gardaí, tickets to gigs and toys vouchers, and even a training session with Bernard Brogan and the Dublin team. We were blown away by the incredible thoughtfulness of people as they went out of their way to create little special moments for Alex. But honestly, it’s the times he spent in Barretstown that he remembers most, our first camp back in 2019 with his bald head when he was still so sick, our virtual camp during the hard days of COVID lockdowns and getting to go back last October. Barretstown has been on this journey with us. When we look back, Barretstown has been a shining light in that memory.

There’s a thing that they do at the end of camp. You get together in the theatre and they play a round-up video of the weekend with all the photographs of the kids and activities. I’ll never forget my boys’ faces lighting up, as each picture of them flashed up on the screen. In Barretstown we heard a sound that was missing from our lives for the months prior. A sound no family home should be without. Laughter. That amazing sound of your children laughing freely. You could go months and not hear the kids laugh when they are going through all of this, then you are down in Barretstown for just two hours and you can hear them giggling!

It really is a little magic wonderland, hidden away. Packed full of the best medicine of all – serious fun and lots of laughter! It’s like it’s in our DNA now, it’s part of us… Barretstown is part of our family now.

Alex is cancer free right now. But we still have to go for scans every few months, to make sure it’s staying that way. And we do our best to not think about it, in between times.

You made this happen for my family, I truly hope you realise how special that is, how special you are. How much this means to families like mine on our darkest days.

Thank you,

Louise (Alex's Mum)