Charlie

Sometimes the Trust works with people who may have finished treatment at a young age, but are still living with the effects of cancer.  Charlie, now 12, was diagnosed with a stage five Wilms Tumour in both kidneys soon after his second birthday in November 2000. Charlie’s mum Helen recalls, “It happened completely out of the blue.  One weekend he was poorly, we just thought it was a chest infection, and the next minute we were in hospital hearing that Charlie had some form of cancer.  Two days after that, Great Ormond Street confirmed a fourteen cm tumour in his abdomen.”

During chemotherapy Charlie lost lots of weight and Helen remembers, “He looked so different, with no hair or eyebrows and black sunken eyes.  One morning at home I couldn’t wake him up. He was cold, not breathing well and his skin was see-through. We went straight to the local hospital where a nurse saw him, and lots more people appeared very quickly, that’s how you know something’s wrong!  He had a blood transfusion immediately and I was so relieved to see him turning pink again before my eyes but he’d gone into liver failure caused by the chemotherapy and we were blue-lighted to Great Ormond Street where he spent sixteen days in intensive care.  We were told his life was balanced on a knife-edge, that’s exactly how it was described to us. We were just living minute to minute.”

“We were in and out of hospital throughout his treatment.  He could wake up at home at 7am then by 9 have a temperature so we’d go back to the hospital.”  Helen was six months pregnant when Charlie was diagnosed, and gave birth to her second child while Charlie continued treatment downstairs at the QE2 in Welwyn Garden City. “In one way it was easier that Charlie was so young, If it hurt he’d scream, you knew exactly where you were! The downside was that it was really difficult to explain to him what was going on.  GOS were fantastic and did a lot of play therapy to help with this. Charlie even named his tubes Wiggly and Sidney as they were such a big part of his life. When they were eventually removed he got quite upset, so GOS sent him a card from them, explaining how they were sorry to leave but they had to go and help another child.”

7 months after starting chemo they were finally able to operate on the tumours, removing one and a bit of his kidneys during yet another unbelievably stressful time, and in Oct 01 his treatment ended.  Helen said, “I think you run on adrenaline in those situations, and humour helped us through, but when it stopped and we were told he was alright we all fell apart for a while! Charlie’s treatment has left him with an enlarged spleen and permanent liver damage, both of which place some restrictions on his life today. He has a lot of scars, and has to take tablets for high blood pressure for the rest of his life, something a twelve year old boy doesn’t always want to do!

Still a regular visitor to hospital, Charlie saw a poster for the Trust’s sailing trip and came on his first trip in 2010.

Helen says, “We’ve all been affected psychologically and Charlie didn’t know anyone else who’d had a similar experience, or even had scars. Sometimes I think he feels very different from other children, and this sailing trip allowed him to feel he had something in common with the others.  We were so grateful he had the chance to join in. He’d never sailed before and was a bit nervous, but the experience was fantastic for him!  He gained sailing skills and had a lot of fun with the people in his group.  He is so excited to be returning in 2011 to do it all again!”