Back In The Game

Oliver's neutrophils were high enough to begin his next cycle today - just. He needs to be higher than 0.5 and he was 0.51. We were both a little tentative about him just scraping over the line, but it's done now, and he is back on track with his treatment. Excitingly, that means that he has had his last lumbar puncture. Every other time he has had one he has had another procedure happening on the same day, and so has generally had a general anaesthetic, or has been so doped up on pain relief that he hasn't needed any extra. This time he was given sedation purely for the LP, and he made it a memorable experience. Previously, when he has had scans that require him to be perfectly still, he has been sedated with chloral, and it has worked beautifully. This time, it seemed to only hype him up and he was not interested in going to sleep at all. After giving him 40 minutes to settle down the decision was made to give him another drug call clonidine and I would take him in to the treatment room so he could settle straight down on to the treatment bed. No way. The clonidine proved to be ineffective aswell. He looked to be tired, but he was partying - I actually wonder if he was hallucinating a little bit with the way he would stare at the ceiling, or hold out his arms for a hug from no-one. So, it was time for plan C. Droperidol was next on the list. It looked like this one wasn't going to work either, but he eventually nodded off and eventually you could have shaved his eyebrows off - if he had any. We are pretty happy about the lumbar punctures being finished with. Any procedure where someone is sticking a sharp implement around your child's spinal cord is always a bit nerve racking.

We saw our little one-legged friend today. What a champion. Always a smile on her face. Karli and I both chatted to her parents today. You want to be able to do something, or say something, but all you can do is sit and listen. I've said it before, but the kids on the ward are amazing. They just do what they need to do. They don't necessarily like it, but they just soldier on. And the parents, they do what needs to be done too. You can see it on their faces. Not surprisingly no-one is happy to be there. There is a look of resignation, contempt, and a little hatred - we don't want to be there, and we are angry that we have to rely on someone else to fix our child, that there is very little we can do for our babies (be they big or small), that we keep bringing them back to endure more treatment, and there is a lingering notion that maybe I am somehow responsible for my child's predicament. None of it is rational, of course. We are in fact doing the best thing for our child. We are not responsible for their predicament, but are responsible for them being able to receive the treatment they need - the very best treatment at the hands of some of the very best medical personnel. And in a strange way, while it is true that we don't want to be there and can't wait to leave, we do want to be there to support our friends and their children, and it hurts to leave them behind and go home when they must stay.