Thursday 18th March 2010

I know it's been a while since the last blog however as Luke has achieved remission and now started the 2nd round of chemo there is not a lot of new information I can tell everyone daily so I've decided I'll put an update in the blog weekly.

We have actually had a busy week. As I mentioned in the last blog Luke had some friends over Friday night. It was good to see him having a good time. We decided that we would go to the movies after our Saturday morning hospital visit. So Luke and Murray saw Green Zone and Amy and I went to see Dear John. We all enjoyed our movies and it was nice to do something normal. Although after walking from the parking into the Mall, then the boys trying to find us while we were shopping afterwards, and back to the car, Luke was pretty exhausted. The next day we had a family get together for Sam's 14th birthday(Luke's cousin).

Luke did have the intention of going to college for a few lessons this week to catch up with teachers etc however he just doesn't feel up to it. He's getting really lethargic with no energy and he says his legs and arms feel like jelly. We had hoped that he could have fit in a few lessons while his blood levels were good but it would appear that his levels are already getting affected by this next round of chemo and are dropping quite quickly. I'd imagine by next week he will be neutropenic.

They have been taking blood at the moment while he is good every 2 days. His levels have been:
Haemaglobin Fri 12/3-119 /Sun 14/3 - 112 / Tue 16/3 - 109 / Thu 18/3 - 100
White Cell Count 12/3 - 14.1 / 14/3 - 7.9 / 16/3 - 5.4 / 18/3 - 3.8
Platelets 12/3 - 187 / 14/3 - 185 / 16/3 - 170 / 18/3 - 139
Neutrophils 12/3 - 12.53 / 14/3 No measurement / 16/3 - 4.3 / 18/3 - 2.1

His Haemaglobin and Platelets are below normal levels and his white cells and neutrophils are just about to tip under a normal persons levels.

Murray has been sick with a cold. I came home from work on Tuesday to find he had put himself into quarantine in our bedroom. He seemed a bit sniffly in the morning but his nose was dripping like a tap that afternoon and very croaky. So he ended up off work on Wednesday and again quarantined to the bedroom with the odd visit out to the kitchen with a mask on. Although Luke is not neutropenic at the moment, he still is at a greater risk of catching a cold which would be the last thing we would want at the moment. So I've been sleeping in Amy's room with her the past few nights as I also can't afford to get sick or else there wouldn't be anyone to look after Luke.
Murray seemed better this morning so he has gone to work.

Luke has managed to have 2 free days from any treatment at home this week - Tue/Wed.
Today turned out to be a very frustrating day at the hospital. He was due to have a lumbar puncture with chemo injected into the spinal fluid. A student doctor attempted to do the procedure first but when she was having trouble the resident doctor stepped in (she is the one who in the past has always managed to do the LP), however she tried several times in different places with no success. She called in the head resident and she also couldn't get the right spot. They've said this can happen after you've had quite a few lumbar punctures as scar tissue can block access. So he needs to have an xray tomorrow that will help them guide them in for the lumbar puncture. So unfortunately he was sedated (not that it worked) for no reason and he currently feels really sore in the back like someone keeps punching him (understandable given everyone was poking and proding at his back with needles).

He also needs to have his central line cleared as they have been unable to get blood from it for about a week. This means urakinasing the line - injecting a protein which breaks up the blood clots that may have formed over the entry point. This will be done tomorrow also. If this does not clear they will need to continue taking blood out of his vein which won't be much fun. They did check for any infection in the line as this would mean the line would have to come out. But at this stage there is no infection.
Since we came home today he's been feeling a bit off and was actually sick for the first time. So I've given him some nausea medication and he's eaten some toast and feels okay now. He had to fast for the lumbar puncture today which was scheduled for 9am which meant no food since last night. So Luke thinks his body is reacting to not eating!!!! He is down to 20mg of Prednisolone (the steroid that's been increasing his appetite) so he has stopped eating his 2-3 servings of meals per meal time and seems to be back to "normalish" eating.

Think that's all that's been happening at this stage. We have our trip up to Sydney next Thursday to visit the stem cell transplant specialists. Speaking with Dipti this morning she is happy with Luke's progress on the chemo protocol and thinks the stem cell would only be used as a back up if things deteriorated. So we will wait and see what Sydney have to say. So unless we have any other news to give I'll do a blog probably next Friday with an update on the Sydney trip.