Give Seriously ill Children their Childhood Back

Dear Friend,

I’ll never forget the look of joy on Finn’s face when my friend turned up one day and gave him a wheelchair. All I could think was how has it come to this? How has it gotten to the stage where my soccer-mad little 9-year-old boy’s legs are failing so badly and it’s become so difficult for him to physically get to and from our car to his chemo appointments – that being given a second-hand wheelchair seems like the best present in the whole entire world to him? Childhood cancer is beyond cruel. It steals so much of the fun and joy from childhood.

Our journey started back in the summer of 2021. As with all kids his age, it had been a disruptive and isolating few years because of Covid. He was thrilled to have things back to normal.  He was about to start into fourth class, in the small country school he attends here in Sligo. There are only 16 of them in the class, so they are really close. He couldn’t wait to be back with them again. In the meantime, he was throwing himself into enjoying every minute of summer and the unusually nice weather. But then things started to go awry. Finn started to run a low-level temperature that he couldn’t shake. And he started having difficulty sleeping, waking up drenched in sweat. Over the course of just one week, he went from diving off the pier having the time of his life, to being flat on his back.

Initially the GP and local hospital thought it was a virus of some sort. But his symptoms kept getting worse. A constant low-level temperature became a high-grade one. I had to keep him on a constant cocktail of Calpol and ibuprofen to keep it below 40 degrees. After numerous cycles of GP and local hospital visits and tests they decided he needed to be transferred and admitted to Crumlin. The doctors there were still baffled, as his blood work looked clear. But suspected some sort of inflammatory disorder. By this stage he was constantly vomiting, couldn’t eat and was on drips to keep hydrated. They started him on steroids while they carried out a bone marrow aspiration to help identify the specific disorder. None of us expecting what it showed up – Acute Lymphoblastic Leukaemia. I was on my own when I got the diagnosis. It’s something that I’ll never ever forget. Standing alone at the nurses station, receiving that gut wrenching phonecall. In an instant, it was like the whole world turned upside down. But there was nowhere to go - no time to have that moment of complete and utter breakdown. I had to be strong for Finn. I was allowed take him home for a few days to gather ourselves, before bringing him back to start on a gruelling and aggressive journey of chemo to fight this devastating disease. Pier jumping and enjoying summer. 

It’s hard to describe what Finn went through over the next few months. I think I just went into logistics mode and tried to stay focused on the practicalities of getting him to and from our home in Sligo to all his treatments. I tried to cope by putting on this iron armour and it was a long time before I allowed myself to take it off and feel everything. A typical treatment day involved us getting up at four or five in the morning. I’d stick him into the car in a blanket with a few sick bags beside him, he’d say goodbye to his dad Cathal and we’d drive to Dublin from Sligo. He’d get his chemo and meds. And usually, a lumber puncture too. And then we’d hop back in the car, to drive all the way home again. He was so lethargic after treatments. He’d just lay around and sleep all day. Then at night, he couldn’t sleep at all – he would be up vomiting non-stop. Finn was amazing though. He never got upset. Or angry. He just rolled with it. But it was so hard and isolating. We had lost my sister, his auntie, to breast cancer just two years before. I think it made him more aware than most kids of the negative outcomes of cancer. Gravely aware that he may not survive. This was so hard to deal with.

By mid-September, he’d lost the power in his legs. And then, towards the end of that month, while we were in Crumlin, he had a massive seizure. One of the medications had caused a clot in his brain. He ended up in ICU - losing the power in his hands too. And having his speech affected. He pulled through, but it was an extremely tough time for him. For all of us. After that, he came off chemo for a few months, onto an immunotherapy drug. And that was amazing. Two months of that and he was like a different child.And before we knew it, he was back for another few months of heavy chemo again. It was just at the end of that time when we started looking into Barretstown. He had missed out on so much. Parties. Sports matches. His communion. And worst of all – being with his classmates in school. He’d been out so much, he was so worried he would have to stay back.

When he heard about this place for children like him, he was so excited - that despite everything he was going through, there was somewhere he could safely go. Somewhere kids like him could have fun.  At that stage he was heading into the maintenance phase of treatment. But even that was still incredibly full on. An IV with chemo in Crumlin monthly, a lumbar puncture with chemo in his spine every 12 weeks, as well as daily oral chemo and steroids…the list went on and on. But Finn really is amazing. He adapted and bravely accepted this was the way it had to be for now. Still, even though he was coping, as his parents, the idea of leaving him for a summer programme on his own for a week still felt very, very daunting. He’d never been away without one of us in his life before. When the three of us arrived at the front gates, I think the nerves got the better of all of us. But they didn’t last long.

Everyone we met from the Caras, to the leaders, to the medical team were so smiley, happy and welcoming – they put us completely at ease. When we arrived we met Nurse Siobhán, who we’d known from the hospital. It was really reassuring to meet a familiar friendly face that day. We were really delighted to see her there. And it wasn’t long before Finn was saying ‘Right, off you go. Bye-Bye’. I won’t lie – it was gut wrenching leaving him. I burst into tears driving out the road with Cathal. Everyone was so lovely and made Finn feel so safe and welcome at camp. But at the same time, underneath all that, I was completely confident that Siobhán and the medical team there would look after him. And in how happy Finn was to be there. It was a long seven days for me without him. But worth every second. Because I will never, ever, forget the transformation when we went to pick him up. And that moment, when he walked out of the room in Barretstown - with all his Caras beside him - looking about three feet taller. Absolutely beaming. And just radiating this pure sense of self-pride. That car ride home is one of the happiest memories I have. After so many bleak car journeys up and down that road from Sligo to Dublin for treatments. Here was my incredibly brave and resilient boy, bursting with news and excitement. Revelling in telling us about all the activities and antics. And the incredible friends he made. You could feel the happiness just bouncing off him. And how much the whole experience meant to him. He wasn’t isolated by his illness anymore. Here were all these other kids going through so much. And he’d such an air of confidence. One that has stayed with him since. I think, to be honest - it will stay with him forever. After going through the worst time of his life during the months beforehand - over one week Barretstown restored him. It built our little boy back up again. He laughed and smiled, climbed and played, danced and pranked – all while feeling completely safe and protected. He connected with people going through similar journeys. From needing a wheelchair to get to treatments, to walking the high beam at Barretstown! Picking up one very, very happy Barretstown camper! He went from being lonely and scared, to being bright and confident. And he left knowing that there is nothing he can’t overcome. Not the next two years of maintenance treatment he’s to go through. Not anything. I can’t say enough about the incredible volunteers, medics and staff at Barretstown – it’s such a vocation. And I can’t thank you enough for being one of their supporters.  You are helping give them back some of the joy that cancer and serious illness steals from them. Right now, I know there are children like Finn and their families who are right in the throes of aggressive cancer treatments. Who are just on the floor, at rock bottom - feeling like they’ve taken as much as they can take. 

Warmest regards,

Claire, Proud Mum to Finn