So here we are. Finished with 80 days of chemotherapy at a cross in the road called reassessment. Bone marrow biopsy, CT scan, radioactive dye injected and two MIBG scans this week to discover how the disease lies in his body now. To be able to be a candidate for surgery his primary tumour on his adrenal gland needs to have shrunk which we know it has. Check. However we still need a clear bone marrow result, to see no other disease and the lesion in his leg and the glimmer on his ribs to have preferably gone or at least faded.
I’ve been fortunate to have been in some amazing, breathtaking places in my life. Swimming in the ocean gazing back at the heat haze hugging a Californian coast, playing kiss chase in a poppy field through an English summer, slicing through choppy waters on a yacht I’m crewing, a grin on my face, sea spray in my hair, watching the purple and pink hue of a dawn spread like a cocktail over a canyon. As I sit month after month watching my son lie in a bed battling with cancer and just about coping with chemotherapy in the bleak, airless rooms of the hospital, I hope that I’ve been able to give him some of the wonderful memories I can rely on to see me through this. I hope one day that he can hold hands with a fun girl who makes him smile or climb some impossible mountain and feel a rush of adrenalin.
We have been at war with cancer since the beginning of the year. People think I’m exaggerating when I call it a war but that is exactly what it is like. Trying to obliterate a silent, lurking, unseen, deadly enemy. Its bloody, bitter and toxic. Watching your child get wounded in front of your eyes is hard to take. After 80 days of chemotherapy Charlie is suffering. His skin has turned brown in parts, he smells of chemicals, he can’t use his fingers as his nerves have been damaged, he can’t stand up after spending 7 weeks in bed and he is still underweight and is being fed through a nose tube. Then there’s the hair loss including eyebrows and eyelashes. Thats what I can see. Who knows what is going on on the inside. So for those of you who think I may be going over the top when I call it a war I’m not. Its grim at best and if its a bit of polite cancer talk at the school gates you’re after then you’ll be appalled at what you read and see here. But then I see His smile. I look at him sometimes and his courage is breathtaking. He is beautiful. Perfect. And I am more in love with him now then I ever have been. When Charlie was diagnosed as being an autistic I remember being sent away with a booklet and thinking I’m not letting this ruin his life and so spent thousands of hours researching methods to make his condition easier to live with. I revisited that feeling in May when he was diagnosed with cancer when I was handed his treatment sheet. I’ve known all of my adult life that cancer was due to visit me. I just never expected it to be my little boy who would be at the mercy of it. You see as you enjoy the summer holidays, look around at the children eating ice cream, laughing, pranking and playing. That is childhood. Charlie and I drag each other through the trenches of stress, sickness and sadness, unexpected laughter and still sometimes an ordinary life lived out in a hospital. One of DVDs and books and computers and chat. But we never forget that this is war. Next summer it will be Charlie who is on a beach somewhere experiencing some peace and tranquility after he’s won his battle and gained not only his health but his freedom back.
So I lie in my bed next to him and I grit my teeth and steel myself to stare back harder at the ceiling than its staring at me. Because if this is all you’ve got cancer then You. Are. Not. Having. Charlie. I close my eyes and the words of Martin Luther King flit into my mind; “Free at last! Free at last! Thank God Almighty we’re free at last! You see I have a dream too and I know with great certainty that one day we won’t be saying these words, we’ll be living them! Our battle cry is GO TEAM CHARLIE!!