Arlo is four years old and lives with his parents, Katie and Jowayne, in Pateley Bridge. After going to the doctors for a suspected lactose intolerance, the family’s life changed forever as Arlo was diagnosed with infant acute lymphoblastic leukaemia aged just seven months. “Candlelighters stood beside us through it all. Being on the ward for that long, and for us being in isolation for a lot of it, it’s a really difficult thing to explain. The Family Support Workers became like family to us, I’m not sure how we would have managed without them” Katie explains. “When you’re in isolation, you’re just stuck in this box and you aren’t allowed friends and family to visit. The Family Support Workers were some of the only non-medical faces we saw. They take time to properly get to know you as people, not just Arlo’s Mum and Dad. We could speak to them openly about how we were feeling, and they’d give us a break by playing and entertaining Arlo. I don’t think they know how much they mean to us.” Living over an hour from the hospital, the family were able to stay in the Candlelighters Cottage to be close to Arlo. Katie shares, “finding out we could stay in the Candlelighters Cottage was huge, it felt like a weight being lifted and like we weren’t alone any more. I was still breast feeding Arlo so I couldn’t be away from him so I can’t explain how important the Cottage was for us. It was somewhere I could get a few hours sleep on a comfortable bed, and have a hot shower while Jowayne looked after Arlo. Those little moments are really important to feeling a bit recharged.” “And when Arlo could come out of isolation, we brought him over to the Cottage. Jowayne would cook and we’d have some family time together, whilst knowing the doctors were only minutes away. The cost of food and petrol alone during those months was over £5,000 and I genuinely don’t know how we would have coped without this support from Candlelighters. It kept us afloat.” We’re so grateful to Katie and Jowayne for sharing their story. To make a difference to more families like Arlo’s, could you make a donation today?
Life was turned upside down in an instant, and Arlo spent the next seven months in Leeds Children’s Hospital receiving treatment. The family were helped by the Candlelighters Family Support Workers, who deliver tailored emotional and practical support with a focus on improving mental health and wellbeing, for both children and parents who are navigating treatment on the wards.
Jowayne adds, “Ryan (Family Support Worker) was always there to check in and offer support, he was someone to talk to when times got rough. I would think to myself – I’m the father, I need to just deal with it – but I realised it’s important to talk and get things out of my head. It made the whole situation easier to cope with.”
“It was really important in the early days too, for those horrible conversations we had to have, like explaining the diagnosis to Arlo’s grandparents. It’s not the sort of conversation you want to have in the hospital lobby or in a coffee shop. The Cottage is private, somewhere we could just cry and try to process everything.”
