Charlie`s Story
We had always remained private through Charlie's illness and found it incredibly hard to talk about what happened and we still do. Only close family and friends were allowed into our circle to know exactly what was going on. This is a really big step forward for us to share our story, a story we feel needs to be told to allow us to do something positive in Charlie's memory. Charlie was our first born child, born 6th April2003. Charlie was funny,clever and great company to be around not only our son, but our best friend. At the age of 5 he began trampolining classes and was soon obtaining badges . He enjoyed dressing up as his favourite super heroes especially Spiderman. His favourite singer was Michael Jackson and he used to practice his dance moves over and over. Mika and the black eyed peas were a couple of his other favourites. Charlie was a huge Adam Sandler fan and had a special love for rhinos, his favourite animals. Charlie also loved the colour green. He was popular at school and he loved his family and his friends very much. Charlie became a big brother in 2007 when his sister was born and again in 2010 when his brother was born. Charlie used to call his brother 'his wish' as he had wished for a brother, but as he was born Charlie's good health took a terrible turn. There was a random episode in the summer of 2009 where Charlie came down from bed crying with a pain in his head, this pain cleared suddenly after projectile vomiting. We called an ambulance as we were so worried and even the paramedic attending to Charlie decided that even though he was fine after being sick she was concerned about head pain that came with it and wanted him to be checked over in the hospital. We were sent home from hospital with a food poisoning diagnosis. We were not happy because the pain was in his head but we were assured food poisoning could cause this. Charlie was healthy for the following months until December then he started to get the odd headache and feeling strange. He had a cold and a bug and the GP gave antibiotics. On January 16th 2010 nearly two weeks after his baby brother was born Charlie started to vomit and wasn't interested in our visitors that day which was unlike him. Over the next few days he develpoed episodes of severe eye pain and again would vomit and be totally fine, back jumping off the sofas like a lunatic (his words). Becoming increasingly worried we took him to the opticians to rule out any eye problems before taking him to the Gp, we went for blood tests. No problems were evident. From January to March we were going back and forth with visits to the GP to A&E and were no closer to a diagnosis. Charlie even had an over night stay in hospital as he started to vomit on a daily basis, this time gastroenteritis was diagnosed and he was sent home with anti-sickness medication. I asked about maybe having a brain scan but the doctors thought he may be suffering migraines and when we finally got to see a paediatrician she prescribed migraine tablets but something told me not to give them to Charlie, so I didn't. I explained I was worried about his brain and she agreed a brain scan if only to reassure me it was migraine. The day of the scan was the day our lives changed forever and the worst day of our lives. After the scan, we sensed the team had found something, but they would not say what. There was a long wait and we were led to a room with a few people inside, we were told there are two things, firstly they had found a tumour and secondly it had grown to such a size it had now caused hydrocephalus, a condition blocking the flow of the brain fluid which caused the vomiting. Charlies dad was angry with them for missing it so many times and I remember just feeling utter despair I cannot even explain the feeling - it was the most horrendous pain, not our Charlie this doesn't happen to us it's only something you read or hear about , it was like we were in a bad dream. Even though this condition had crossed my mind we never really expected to hear these words. The tumour had only made itself known the year before when Charlie had the first episode when we went to A&E. The tumour then sneakily grew in the fluid space of his brain. It wasn't until it was a huge size and caused hydrocephalus that the real symptoms started in December until March . Charlie was transferred to a specialst children's hospital where he had surgery to insert a shunt to help drain the excess fluid causing hydrocephalus A few days later we recieved the results of the biopsy, the worst possible news, the most aggressive malignant tumour (Glioblastoma Multiform Grade 4). They decided not to try to remove the tumour because of its size and the fact it had started to spread meant they did not want to delay radiotherapy by putting Charlie through a major operation. We were told he only had a 25% chance of survival (which we later found out it was actually much less) I was hysterical, everything was spiralling out of control. The news was worse and worse each like a physical punch in the stomach. Charlie was to start 6 weeks of radiotherapy the day after his 7th birthday followed by chemotherapy . In desperation we contacted different hospitals around the world for help and got a second opinions but it seemed no one could change the outcome. His father spoke to leading experts and asked about many new treatments coming from around the world and we were told none could help him. We spent hours and hours searching for a cure for our little boy with doors slamming in our faces everywhere we turned. It was exhausting and draining but we were desperately looking for a cure. Charlie was on a huge steroids dose he gained a lot of weight and radiotherapy made him lose his hair. He often needed a wheelchair as he was too tired to walk. He stopped talking so much but as they dropped down his steroids he got back to the old Charlie again. Radiotherapy was so frightening Charlie was strapped down with a mask they moulded for him, we were kept outside only watching from a screen and talking to him through a walkie talky, to keep us safe but our precious little boy was in there on his own, in that machine. This was one of the hardest parts, but this might be the one thing that saved our little man. He would listen to Mika and black-eyed peas whilst having the treatment to make it a little easier. He never complained although he did ask "why me mum"? a couple of times. This was heartbreaking. Charlie knew he had a lump in his head that the doctors were trying to shrink it. We explained sometimes things happen and we all had to be strong. I promised him he would get better as that's what we believed. We went to school for the odd afternoon together or to share lunch with his friends which he enjoyed. Charlie was really conscious of his hair and the changes in his appearence even though we told him it doesn't matter, but when he met someone new he'd always say "this isn't my proper look" and prompted me to show a photo of him before he got ill. He used to worry he would have to wear a hat forever. We always told him not to worry everything would be ok. Charlie did well after radiotherapy and was running around again sometimes. From the start of radiotherapy after researching we decided to cut out sugar from his diet to give Charlie the best chance and this was hard as he was still a little boy. We found out 4 weeks later that the tumour had shrunk! We were so happy and Charlie said "that's because I ate all my broccoli". When the radiotherapy course had finished he began chemotherapy which was ok and he didn't really suffer any side effects.
We also noticed a change in Charlies pupil and after an MRI the local hospital told us the tumour had shrunk further, we were ecstatic. However this was a mistake and we were told later that the tumour was growing again and two more tumours were starting to form. We could not believe it, how could they tell us it shrunk to find out the next day it was growing again? Our world was crumbling away. They told us we had a choice - carry on with his chemotherapy and hope for a delayed response or hospitalize him with a different chemotherapy that he may not cope with. We were told in the hospital by a oncology consultant that no progress had been made in treating this type of tumour in 40 years. We decided to try again with his chemotherapy, we had a few good weeks and never gave up he was not going to leave us we couldn't imagine our life without him. During our journey, Charlie had some holidays with family and friends and we went to Disney Land Paris, a gift from the Christian Lewis Charity, this was the best thing we did with him and he loved it and we are grateful beyond words. We adopted a rhino for Charlie at Woburn Safari Park and they went above and beyond for him he even got to touch the rhino - we are so grateful to Dan and Georgina for making this happen. We were trying to make his dreams come true. Charlie also had a long telephone conversation with Adam Sandler who again will never know how he made a difference to a little boys life, Adam will always have a place in our hearts. Charlie always said laughter is the best medicine.He also had a visit from actress Francoise Pascal who again gave Charlie laughter with her television series, which we are so grateful to her for as she wanted to meet Charlie. Thank you to anyone who was there for us through Charlie's illness and who helped us in any way, we have not forgotton. I will end our story here for our privacy, Charlie's dignity and also to save our pain only to add that..... Charlies health deteriorated and on the 14th November the oncology nurses called with Charlie's blood results to say his kidneys were not working as they should, it was likely his body was shutting down. The 15th November was Charlie's last day with us and our lives have never been the same again. It certainly does not get easier when it is your child and sometimes still doesn't feel real. To Charlie, We will miss you for all our lives We will love you to the moon and back forever Our emptiness could never fill in all eternity You were so brave oh so so brave no one could ever imagine We will try to help fund a cure as much as we can for other parents who are told the dreaded news, whilst not letting them ever forget you, we will charge on with you keeping your memory alive, love Mummy and Daddy Charlie has since had a new baby sister who was due on his anniversary, well all we can say is you couldn't plan that if you tried which says it all really, thank you Charlie.....Press play to listen to 'a song' for Charlie.
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In Charlie`s memory
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We took to Charlie to the south of France and to Lourdes as Charlie was a holy boy. Towards the end of our time there Charlie started to get headaches. We stopped being so strict with the 'no sugar' now as we were not sure it was helping anymore.
