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Dylan-James’ story

September 19, 2019

After being given the devastating news that their son’s cancer had returned, Alison and Warren spent a week at Shooting Star Children’s Hospices making memories they’ll cherish forever.

“It was the end of term, not long before Dylan-James’ 3rd birthday when he was first diagnosed,” explains Alison. “I’d taken Dylan-James and his younger brother Elliott to have their vaccinations for a family holiday, but Dylan-James just wasn’t bouncing back and he had a fever. One evening Warren said that Dylan-James’ tummy didn’t feel right – it felt hard, so we went to A&E. They said the four worst words any parent can hear: ‘Your child has cancer’, and our whole universe changed.”

Dylan-James was diagnosed with Stage 3 Wilms Tumour – a childhood cancer that is 90% curable. He started chemotherapy straight away to shrink the tumour, which was attached to his kidney. Following four weeks of treatment, the tumour and Dylan-James’ kidney were successfully removed and he was home just a few days later to celebrate his birthday. Dylan-James then underwent a further ten months of chemotherapy and radiotherapy in case any cells from the tumour had spilled. “Every month the CT scans were clear,” said Alison, “but in May, with just one more month of treatment to go, we were told the cancer had come back in the original site as well as his lung. We tried various different treatment options at The Royal Marsden, but nothing worked and then it all happened very quickly.”

Dylan-James started to experience breathing distress so he was transferred to nearby St George’s. “We were in intensive care and it wasn’t looking good, even though Dylan-James just seemed so well. It was there that we were told he had just two months to live. It didn’t feel right to lose Dylan-James in hospital, so the other options were to take him home or to Shooting Star Children’s Hospices – it was actually my sister who said to go and see the hospice, because I just wanted to take him home. Dylan-James came with us when we visited Shooting Star House in Hampton and as soon as we walked in and I saw how happy he was that was enough for me, my decision was made.

“We went straight to Shooting Star House from hospital and it was just amazing – not only did the care team look after Dylan-James, they looked after us and the rest of the family. They were like angels. We loved using all the facilities for that week, particularly the sensory room and the gardens. The care team also took hand prints to go on a bracelet, which means the world to me. At the end of the first week we took Dylan-James home for two days and the Hospice at Home team came out to check on us. He was so pleased to be at home, to see his toys and sit in the garden.”

Sadly, shortly after arriving back at Shooting Star House, Dylan-James died – less than a year after first being diagnosed and just weeks before his 4th birthday. “He just fell asleep in my arms next to his daddy,” explains Alison. “I cuddled him for two hours before we went to the Tranquil Suite. The lovely staff at the hospice had changed the bedding to his favourite superhero ‘Catboy’ and projected stars on the ceiling, which was so beautiful.

“They looked after all of us and they’re still looking after me now. We came to the Memory Day and I’ve been having bereavement therapy – we were so well looked after by Shooting Star Children’s Hospices that I feel comforted when I come back.

“Dylan-James was absolutely beautiful inside and out – happy, clever, funny, resilient and inspiring. He was like magic. We were told we would have two months with him, but it was only actually just over a week – we had that week at Shooting Star Children’s Hospices and what a precious week it was. We are heartbroken without him, but it’s amazing how the worst time of your life becomes such a treasured memory and it’s Shooting Star Children’s Hospices that made that possible. I can’t put into words how much of a lifeline they’ve been.”

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