16-year-old Josh was fit, sporty and unassuming. He’d had no significant health concerns, until one day the family’s world came crashing down. Mum Caroline shares their story.
“Josh had great capacity to make lots of friends,” says Caroline. “But he also showed maturity far beyond his years – he was like a wise old man! He had been my bundle of joy from the moment he was born and I was always excited about seeing him develop and working out what he wanted to do in life.
“But then our world came crashing down. It started innocently enough when Josh said his back was hurting. He couldn’t recall an injury playing football or tennis – two of his loves – so I took him to a doctor, who dismissed it as growing pains. We arranged for a blood test just to make sure, and that came back fine, but I did have this lingering worry because Josh very rarely complained about anything.
“A few days later, Josh was staying at his dads when he called me very distraught. He told me he’d found a lump in his groin and was convinced he’d got cancer. I tried to reassure him – I think my exact words were ‘don’t be silly’ – but we booked an appointment to see our regular doctor, who had been away on holiday on our previous visit. He examined Josh and I’ll never forget the look of concern on his face when he pulled back the curtain to speak to me. We were transferred to hospital where Josh was hastily taken through numerous tests and MRI scans. Within a few days, we were given the horrendous news that Josh had Clear Cell Sarcoma. It is a very rare form of cancer – so rare that it does not show up in routine blood tests. Worst of all, we were told Josh had weeks or, at best, months to live. In that moment our lives changed forever.
“Josh needed a back operation immediately as his spine was crumbling from the cancer. During that excruciating procedure further tumours were found growing around his stomach area. We were told his cancer was already at level four and the plan was to give him chemotherapy and radiotherapy to help reduce the level enough to allow us to take him to United States for pioneering treatment. Unfortunately we never got to that point.
“Our experience in hospital was becoming increasingly worse – at one stage Josh was bleeding quite badly and his dad and I were left to physically try to stop it ourselves. We didn’t feel we were getting the right support and were at breaking point. At that point a good friend of mine who knew of Shooting Star Children’s Hospices said we needed the vital support.
“Josh and I were taken by ambulance to the hospice. The moment we arrived at the hospice everything changed. We were given a lovely room, and the atmosphere, support and warmth resonated from every area of the building. The surroundings at the hospice are beautiful, with such incredible attention to detail and care beyond words. It was such a comfort to us. Josh made friends with other children being cared for by the hospice and the family accommodation gave me the chance to catch up on some much needed sleep, knowing he was being looked after by the care team. I had barely slept in weeks and they almost dragged me upstairs to get some rest, but they were doing it because their support goes beyond the medical care for the child; they look after the whole family.
“We managed to take Josh home for Christmas Day but were back a few days later because he was deteriorating quite quickly. Just before New Year’s Eve we were told Josh would likely pass away by the end of the week. He was drifting in and out of consciousness, and despite courageously rallying a couple of times, he passed away a few days later surrounded by his dad, his sister Ellie and myself.
“Although it was an experience too painful to explain, Shooting Star Children’s Hospices made it the best it could be. They were amazing. They genuinely feel your pain and go out of their way to help. I will always be grateful to Shooting Star Children’s Hospices for the way they cared for Josh and our family. The support continued after Josh’s funeral. I benefited from counselling sessions, which is part of the charity’s bereavement service. They helped me work through the various stages of grief, the denial and anger which is common for a parent when their child has died.
“Looking back I can’t imagine what would have happened to us if we didn’t have the support of Shooting Star Children’s Hospices in those last few weeks. It’s scary to even think about it. In that sense we were lucky because we know not everyone gets that support. We now hold an annual fundraising day to allow Shooting Star Children’s Hospices to support other families who find themselves in the same position as us. We can only do so much, however, so I want to thank the charity’s supporters for everything they do to keep the care service running. It meant so much to me and my family, and will for many others.
“Josh taught me so much with his courage and dignity during this horrible disease. He didn’t once complain. He brought so much to everyone he met and continues to – he taught me how to carry on with my life and not to give up. Josh was and always will be my inspiration. He leaves behind an amazing legacy.”
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