Neuroblastoma only affects 100 children a year in the UK, so little funding is put into research into this horrific disease, thus survival rates only being about 30%. Those that do survive live a lifetime of fear of relapse, or having a secondary cancer or waiting to see what side effects materialise as a result of the multitude of treatments.
Please make others aware if this disease that we had no idea about until 12.11.11.
Harry is fading from us. His morphine patches have been doubled tonight to provide further pain relief.
Our beautiful son is becoming tired and irritable from the morphine. It's a long hard road to traverse.
I am so glad we went to Filey last week, the best decision ever. Harry may stabilise again, but each upping of the morphine, means the disease is progressing in Harry's body and he is ever closer to being taken from us!
I am scared about the end, I just don't know how I will ever say goodbye to Harry and never see him in the flesh again.