To hear anyone describe 2020 as “one of our best years ever” might seem unusual given the effect of the pandemic on all our lives, but to hear it from father of three, Barry de Jager, is even more remarkable. For in May, Barry’s son Luwan, then aged three, was diagnosed with leukaemia. He and his family have been under our care since August, and Barry says it is a relief to finally know what they’re dealing with in terms of his son’s illness.
“Luwan really is the sort of child who lights up a room,” says Barry, “So when his childminder told us he was lashing out at the other children, it just seemed so unlike him. Then, when he grew increasing lethargic and developed cold sores round his mouth and nose, we knew something was definitely wrong.”
For the De Jager family, a trip to their GP with Luwan was the start of a journey that took them to no fewer than five hospitals, with suggested diagnoses covering everything from covid-related illness to throat infections to the possibility of juvenile arthritis. With two other children, Lillah, now two, and Mielan, six, needing looking after, and mum Felicia a key-worker teacher, it was Barry – a guitar teacher – who accompanied Luwan to his many appointments and stays in hospitals across north Kent and London.No wonder Barry describes it as “a relief” when the confirmed diagnosis of leukaemia came through from St George’s Hospital in London, with follow-up chemotherapy treatment then starting at the Royal Marsden in Surrey. “A diagnosis of course means targeted treatment, which is essential. And it’s been wonderful to see Luwan improve as the treatment has kicked in,” says Barry. “Seeing him back on his little bike – something he certainly couldn’t face at his most poorly – was a joy I’ll never forget.”
With treatment at the Royal Marsden ongoing, it was staff there who referred the family on to ellenor. “The charity has been instrumental in keeping our life as normal as it can be,” says Barry. “When we are at home, the other children are understandably fighting for their places within the family, and it’s been especially hard for Mielan- he’s said he wishes it was him who was ill and not his younger brother.
“Back in the summer, in our first dealings with ellenor, we were visited by one of the team, who took us through the sort of services they could offer us. Not only do the ellenor nurses help us with practical things, like checking Luwan’s bloods, handling the logistics of appointments and ensuring we’ve got all the medicines he needs, but they are always at the end of a phone to talk to. We’ve always felt that Luwan needs holistic care – which is an idea we know ellenor embodies. Though the charity has been understandably limited in the kind of social activities it’s able to offer at the moment, we did enjoy a brilliant day they organised back in October. It was just the simple activity of pumpkin picking outdoors, but to experience it with other kids and families in a similar position to our own, to be able to relax because we knew we were in expert hands and, above all, just to take part in a fun, normal activity was incredibly special. I can honestly say it’s one of the best days we as a family have had, ever – and we’ve got loads of happy photographs to prove it!”
Though 2020 has brought the De Jager family many challenges, Barry remains philosophical: “What we’ve realised through Luwan’s illness is the power of community to bring you through – we’ve had support from everyone from the Dartford Valley rugby club I play with, to parents who’ve kept our other two busy with playdates – and thankfully Felicia’s mum was able to come over from South Africa in the summer to help us out, too. Through it all, ellenor has been a constant – with its practical and emotional support ongoing.
“As we approach Christmas, we are still taking things one day at a time and no one knows exactly what we will and won’t be able to do this year. But just to know that Luwan is so much better than he was back in May, when he was so poorly and we didn’t know what was wrong, is a gift in itself. It’s charities like ellenor that have enabled me to be confident that we, as a family, will look back on 2020 as one of our best years ever. The positivity and love we’ve received has been incredible. Our love for one another will never be stronger than it is this Christmas and as we move into the future.”