Update

We came home on Wednesday afternoon as scheduled. Oliver had his bone marrow aspiration done in the morning while Karli went off to Centrelink She had to take identification papers to prove she was who she was in order to get the carers payment - what a shamozzle that turned out to be. Something so simple was, and still is proving to be, rather difficult. It's hard enough doing the right thing, why anyone would want to go through the rigmarole of defrauding Centrelink is beyond me. But, enough of all that.

We had a fairly nice afternoon on Wednesday and were looking forward to a good nights sleep, but Oliver had other idea's. He was fairly unsettled all night and most of the next day. We worked out that he was in some pain, at least that's what it seemed to be. It's so hard to work out what is happening for him. We don't want to give him something if he's just whingeing, but we don't want to hold back if he needs something either. I know this would be no different even without the cancer, but the cancer and chemo seem to make it just that little bit worse in our minds.

I met a young girl on Wednesday who has the same cancer as Oliver, only a she was little bit more advanced at diagnosis. I was chatting to her Dad and it seems to have been a rough ride for them so far, and also a tortuous path until a correct diagnosis for too. As I understand it, there have only been three children through the ward with ALCL, so given it's rarity it's nice to have someone to fight our common foe with. I hope to chat to the young girl just to find out how the chemo has affected her (she's about 12) and to get some idea of what might be happening for Oliver. Her dad mentioned that mum is destroying herself by reading things on the net. It's hard to get your head around the difference between adult and children's cancer. Unfortunately most of the information out there is about adults, since they make up about 97% of all cancer sufferers. So a lot of information is not terribly useful. I've pretty much tried to stick to specific organisations, and any other information is from sources that are focussed on children. You can probably guess that, given my lack of consistency with my blogs, I haven't done as much research as I would like.

We were back in at hospital today just to get some blood tests done, and Oliver was also tested for the flu as he has a bit of a cough and sneeze, and a runny nose and we think a sore throat. We were only there for about 2 hours, and the last 30 minutes was spent chatting to the consultant, which was really nice. We are so blessed to have Dr Alessandri looking after us. She is very bright, bubbly, caring and honest.

We were supposed to start chemo today but a procedure was missed on Wednesday, so that will happen on Tuesday and we will start chemo then. So we have about 5 days at home, touch wood, and we will hopefully get some good family time in. We are fairly tired though, and I'm not sure what family time will look like. Maybe a little picnic in the backyard is a good place to start.

I'll keep you posted on what's happening. Sometimes it seems like there isn't much to write about or I'm repeating myself, but this is as much for me as it is for everyone out there - feel free to skip bits you want. To update you on our little friend who had her leg removed last Friday, she is doing well and is off home today.