A Life With Autism and Cancer
When Charlie was 3 years old he was diagnosed with Aspergers Syndrome which is a form of autism. Now he is 5 years old he has been diagnosed with Neuroblastoma an aggressive children's cancer. I absolutely believe that when he is 10 years old I will be able to say Charlie beat cancer. Keep reading. Charlie is one of life's amazing people.
He is beautiful, brave and brainy. My 'little professor' has endured so much already. Getting to grips with his autism has been tough for him. He sees things differently to other people. The world around him is at best chaotic and confusing. You can see it in his big blue sorrowful eyes. He suffers from terrible anxiety and most things frighten him. He has sensory issues which some days make too much noise, touch and motion unbearable for him. Even with all this he has managed to attend a mainstream nursery and now school, his most valuable lesson being able to navigate a place for himself in mainstream society.
He is unintentially hilariously funny being a cross between Mr Bean and Stewie from Family Guy. He has absolutely no understanding of authority or celebrity and is completely honest. If you have a crooked nose, he will tell you! He loves Pink Floyd and classical music, Thomas the Tank Engine and his beloved iPad. He can read anything you put in front of him and is a born storyteller with his singsong voice. He likes being alone but would love to have a friend who 'gets' him and he is fierecly attached to his Inner Circle....the family. And they to him. He is adored and loved by us and none of us have ever met anyone like him. His huge character is cherished by many. He is simply a one off.
Charlie had been ill for five months prior to being diagnosed. I took him 11 times to GPs and specialists at the hospital but sadly due to his austim they waved us away saying that it was chronic constipation, that lots of children with autism suffered this. He was never offered an xray or blood tests due to him being so difficult to examine with his autism. It was not until our last trip to A&E after saying I was not moving until he was xrayed, that I knew he was dying that the full horror of what had been happening to him was revealed. He was weeks away from death. His body was shutting down. Had tests and scans been carried out earlier at my request he may very well have been a far more cureable Stage 3 but instead we have the devastatingly cruel news that he has Stage 4 Neuroblastoma which carries with it a 30% survival rate. So many people have let Charlie down.
We have spent months in hospital now (no mean feat for Charlie) and he has got through lots of invasive scans, chemo, tests, operations, radiotherapy and has tubes through his nose and chest. At times he has weighed half of what he used to and has had to be fed both through a nose tube and through his veins and still has to get around in a wheelchair. He is unrecogniseable really. Yet his spirit still remains as it always was: strong as an ox, resilient, unbending. Just about coping with everything. A half life. A life on the edge. No child should have a life like this.
As soon as he was born I knew he was a special person who would do wonderous things with his life and so many who know him can see the brilliance of him. That he can look at life from different angle......one wonders what he could achieve.
Presently he has no active cancer cells in his body however he does have a tumour, albeit a dead one, the size of a ping pong ball which he can live with. We now join the rest of the neuroblastoma families who are watching and waiting and trying to live a life to the full in the meantime. Charlie has made it through treatment where others don't and his conventional medicine has finished. Its tackled the symptom, got it under control and allowed him to live. We now employ all the detoxification, natural and nutritional therapies to support Charlie in re-gaining his health and immune system. We may never know "why autism? why cancer?" but we will give it a damn good shot at beating them both. So this is a tribute to the lifeforce that Charlie is. Shine on my crazy diamond.
Sharon
He is beautiful, brave and brainy. My 'little professor' has endured so much already. Getting to grips with his autism has been tough for him. He sees things differently to other people. The world around him is at best chaotic and confusing. You can see it in his big blue sorrowful eyes. He suffers from terrible anxiety and most things frighten him. He has sensory issues which some days make too much noise, touch and motion unbearable for him. Even with all this he has managed to attend a mainstream nursery and now school, his most valuable lesson being able to navigate a place for himself in mainstream society.
He is unintentially hilariously funny being a cross between Mr Bean and Stewie from Family Guy. He has absolutely no understanding of authority or celebrity and is completely honest. If you have a crooked nose, he will tell you! He loves Pink Floyd and classical music, Thomas the Tank Engine and his beloved iPad. He can read anything you put in front of him and is a born storyteller with his singsong voice. He likes being alone but would love to have a friend who 'gets' him and he is fierecly attached to his Inner Circle....the family. And they to him. He is adored and loved by us and none of us have ever met anyone like him. His huge character is cherished by many. He is simply a one off.
Charlie had been ill for five months prior to being diagnosed. I took him 11 times to GPs and specialists at the hospital but sadly due to his austim they waved us away saying that it was chronic constipation, that lots of children with autism suffered this. He was never offered an xray or blood tests due to him being so difficult to examine with his autism. It was not until our last trip to A&E after saying I was not moving until he was xrayed, that I knew he was dying that the full horror of what had been happening to him was revealed. He was weeks away from death. His body was shutting down. Had tests and scans been carried out earlier at my request he may very well have been a far more cureable Stage 3 but instead we have the devastatingly cruel news that he has Stage 4 Neuroblastoma which carries with it a 30% survival rate. So many people have let Charlie down.
We have spent months in hospital now (no mean feat for Charlie) and he has got through lots of invasive scans, chemo, tests, operations, radiotherapy and has tubes through his nose and chest. At times he has weighed half of what he used to and has had to be fed both through a nose tube and through his veins and still has to get around in a wheelchair. He is unrecogniseable really. Yet his spirit still remains as it always was: strong as an ox, resilient, unbending. Just about coping with everything. A half life. A life on the edge. No child should have a life like this.
As soon as he was born I knew he was a special person who would do wonderous things with his life and so many who know him can see the brilliance of him. That he can look at life from different angle......one wonders what he could achieve.
Presently he has no active cancer cells in his body however he does have a tumour, albeit a dead one, the size of a ping pong ball which he can live with. We now join the rest of the neuroblastoma families who are watching and waiting and trying to live a life to the full in the meantime. Charlie has made it through treatment where others don't and his conventional medicine has finished. Its tackled the symptom, got it under control and allowed him to live. We now employ all the detoxification, natural and nutritional therapies to support Charlie in re-gaining his health and immune system. We may never know "why autism? why cancer?" but we will give it a damn good shot at beating them both. So this is a tribute to the lifeforce that Charlie is. Shine on my crazy diamond.
Sharon
