Once a month Ted has a 2 hour infusion of immunoglobulins. He has been having this now since christmas 2008.
This time last year he was so ill he could barely lift his head from the pillow. He couldn't eat so was fed via a nasal gastric tube.
He hated NG tubes more than anything else he had done to him. It didn't matter how much (or little) nutrition we dripped in to him, it would all come back up again. He was catching infection after infection and suffering from chemo damage to his gut and bowel.
It was decided back in december 2008 (when he weighed not much more than he did when he was born but was 16 months old) that he would receive immunoglobulins every month to try and help him fight the bugs constantly attacking his body.
It isn't a decision taken lightly by the medical team because it carries certain risk factors, and it is also expensive and in short supply.
As I sat in the hospital today I realised how far he had come since last year, but also how much I simply can't go back there. Not to the hospital, but to the "place" we were regarding his health. He was so ill, the week before christmas he didn't recognise who I was. I can't begin to describe how much that broke my heart. My son was starving to death because his body couldn't keep hold of any nutrition.
His end of treatment date is March 17th 2010. I long for that day to be here, but will also feel an element of fear because he has had a year taken from his treatment, and the bigger fear of relapse.
It will be over for Ted, because he is young and doesn't understand anything that is happening with him. It is just a way of life for him because he was only 6 months old at the start, but for John and me the fear of relapse is real and will always be there.
Every bruise, cough, temperature will be met with a heart sinking....is it back?