Thursday 16th September, 2010

Well Luke has had a rough week. His chemo was on hold as his neutrophils were too low to continue cytarabine. On Thursday 9th Sep, Luke was given a PEG injection to increase his neutrophils. This seemed to work within a few days. We found out that this injection costs about $5000 - $6000 so obviously it is not something that is given all the time (this is covered as Luke is still technically an in patient of the hospital). On Friday 10th Luke's lumbar puncture still went ahead as planned. We were told his chemo would start again on Saturday. When Saturday came we were once again told chemo was on hold as his haemaglobin and platelets were too low. On Sunday Luke needed 2 x blood transfusions. So that took 6 hours by the time they cross matched his blood.
Monday was a bit of a nightmare day for Luke and Murray. Over the weekend, there had been talk about a problem with pharmacy and a stocktake of chemo they had done. The doctors confirmed that they are 90% sure that Luke was overdosed on chemo. When he had cytarabine back on Thursday 2nd September it would appear that instead of the 160mg over 4 days he was given 800mg over 4 days instead. He is okay, however the overdose would explain the problems that are occurring with Luke's bloods and immune system going so haywire. It appears that the higher dosage is used in paediatric protocols, so as Luke is relatively young they seem to think this is why he has coped alright with the mix up. The doctors are monitoring Luke's blood levels and his chemo is currently on hold till these build up to an acceptable level.
The boys started the day at 9am at the hospital to see the doctors and ended up leaving at around 6pm after much discussion throughout the day between doctors, nurses and pharmacy and another 2 x blood transfusions. So it turned out to be a very long, stressful day for them.

So at this stage chemo is still on hold and his bloods are slowly picking up, chemo will probably start back up on Monday. I'm starting to stress out a bit about the delay in the chemo. Only a few days before all of the dramas, I went ahead and booked tickets for the boys to go to the Motor Show in Sydney on the 16th October. We decided that Amy & I would go to see Fame the musical and I've booked a nights accommodation. This date worked out well and fell at a time when he would have had 3 weeks between chemos. The problem is the longer this delay keeps happening now, the more chance that he will either just have finished chemo and probably be neutropenic or he'll still be on treatment. The boys have a week to play with as the motor show is on till the 24th October, however Amy and I are locked in with our show dates. So worst case scenario is that Amy and I will have to go up by ourselves and the boys may miss out of the motor show!! It just goes to show, I shouldn't plan things too far in advance because you never know what's going to happen!

Mum unfortunately still has the catheter. The good news over the last few days after ultrasounds, CT scans and blood tests is that everything appears normal. There are no masses or cancers etc showing anywhere in the abdomen that could have caused problems. She went to the doctors today and they have agreed that next Wednesday they will try again to remove the catheter.So hopefully it works this time around. I guess that just leaves whether the parkinson's is causing any problems.
I cannot believe Mum & Dad's kitchen is just about done!! They ripped it out on Monday and installed the cabinets that afternoon. The finishing touches to the cabinets happened on Tuesday/Wednesday with handles etc. The plasterer came today and patched up all the bits and pieces (they had to put up new gyprock where the tiles on the walls had been glued on a bit too well!!)
I went over this afternoon to show Amy the kitchen and stayed to clean the cupboards/drawers and start finding a home for all their stuff. It really looks great. Being white the kitchen looks much bigger than the old wood kitchen. Hopefully they will have much greater access to everything now.
We have decided to go ahead with the same company, Caliber Kitchens. So hopefully work will start on our kitchen in 4 weeks. Our problem at the moment is trying to finalise colours in the kitchen as well as floorboard colours to go through the entry, kitchen, family room and hallway. Unfortunately everyone has a differing opinion!

I'll update when there is any further news.