Charlie……….Shine On You Crazy Diamond!

When Charlie was three years old he was diagnosed with Aspergers Syndrome.  When he was five years old he was diagnosed with Stage 4 High Risk Neuroblastoma, an aggressive childhood cancer with a bleak survival rate that effects only 100 children in the UK every year.  I’m hoping that when Charlie is ten years old I’ll be able to look back and say with joy ‘Charlie beat cancer’.  For that to happen I need anyone’s and everyone’s help to raise the funds to take him for treatment in America.

He has in effect been struck by lightening twice…..first with Aspergers Syndrome which is a form of Autism.  In some ways having this makes him very special and an extremely unique person.  He is super brainy and can read anything you put in front of him, has a fantastic totally ‘off the wall’ sense of humour, is extremely loving with his family and is a very well behaved, quiet boy.  Great I hear you say….so what’s the problem?  Well he is bad a communicating with people.  Finds it exhausting in fact.  He is extremely anxious and frightened of people, doesn’t have any friends, can be taken advantage of easily and is simply socially awkward making for a very lonely, depressed boy at times.  His senses are also far more accute than most peoples.  We can tunnel certain sounds out, can pick out and focus on certain sounds but Charlie hears it all as one cacophony; chit chat, traffic, alarms, phones.  He also sees too much motion going on around him.  Most days result in sensory overload for him.   Having said that I would not change his Aspergers Syndrome……its what helps to make him brilliant but I would make some things easier for him if I could.

Charlie’s cancer diagnosis came in mid May and was no surprise.  I had known since February that there was something seriously wrong with my boy and had spent the last months watching him dying in front of me, professionals seemingly totally oblivious to what I could see.  So you see his diagnosis was a relief to me.  So sure was I that there was something terribly wrong with him that when he was finally given an ultra-sound scan for the first time, five months and eleven visits to doctors and hospitals later, I had packed our suitcase already expecting us to be ‘shipped out’ to another hospital.  And indeed we were.  To Royal Manchester Children’s Hospital where at last someone could see he was desperately ill and not only could tell me what it was, but what could be done to make him better.

So now Charlie has just finished his fourth round of chemotherapy.  His treatment plan is eight rounds of chemotherapy over 80 days followed by surgery.  Next will be a stem cell harvest and more intensive chemotherapy after which his stem cells will be given back to rescue him.  Last of all will be radiotherapy.  At this point I have had the choice as to whether I want to stay in the UK for his immunotherapy where he would be given one or two drugs or I can take him to America where they are licensed for three drugs.  His immunotherapy will hunt down any immature cancerous cells that have been missed up to that point and hopefully destroy them.  This is his best chance for not relapsing.  His treatment is punishing and tiring.  It would be for an adult nevermind a five year old child.  And aswell as fighting off his tumour he has been having complications with bleeding which has seen him have incredulous amounts of blood transfusions.  During a short visit home after his third round of chemo we rushed him back into hospital as he was looking pale and limp and he nearly died.  Twists and turns with this disease.  You just don’t know whats around the corner and how his body might react.  Its a life spent on the edge.  A half life that no child should experience.  Life has other plans for Charlie though! We spent a couple of days on the High Dependancy Unit before transferring happily to our usual ward for more chemo.  

For now we are blazing a trail through fundraising for Neuroblastoma Children’s Cancer Alliance who will help Charlie get to America for immunotherapy.   What a fantastic group of people they are…..ever helpful, full of resources and of course most importantly….hope.  And our local community, friends old and new are truly humbling in all they are donating and organising for him.

If you’re reading this and would like to help us fundraise or donate to Charlie’s cause you can do so at www.justgiving.com/goteamcharlie

So at the end of this week I can say that Charlie has been to the edge, looked over and thought ‘Not for me’ and headed back to us.

Keep forever strong and full of fighting spirit Charlie, my boy wonder. xxx

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