Just a quick update on my poor little man. The steroids and vincristine effects are back with a vengeance and Scott is feeling dreadful. It seems that with each new cycle the side effects worsen. So much for maintenance being easier. It isnt. I think I have said this before but although the high dose chemo and radiation are now behind us (hopefully) his body and mind are so exhausted that even the maintenance drugs have now become a real challenge.
His mood swings from the steroids are distressing; tears, anger, sadness, they just roll on, one after the other. Then there is the constant hunger, swelling up his face and body and fighting with the pain of the vincristine. How cruel to have such a raging hunger combined with pain in his jaw and head. He is also very aware now that the pain will worsen in the coming days, moving from his head, down into his back and eventually his legs.
Until recently he never took pain medication or anything to help him sleep, he just bravely soldiered on. Not anymore. Now he wants to be knocked out, he wants to sleep and put the clock forward until the pain and distress start to ease again.
How sad that a child wants to sleep through even a moment of what should be the most precious days of his life.
He has become very clingy, he has always been that way but now much more than ever. I dont mind, ofcourse I dont mind, its good to feel like a have a purpose and can comfort him but at the same time I wish he could be out playing in the sunshine, rolling in the dirt and getting all scratched up, not clinging on to me and wishing the days away.