Friday 20th August, 2010

Luke has had a few weeks with very little hospital visits which has been nice.
He hasn't had any chemo since Thursday 12th August. He has however had to take steroid tablets for a week, which has shown an increased appetite - eating non stop like the last time he was on steroids and gaining a moon face again. He did appear to get a bright red rash or pimples all over his face/arms/back. The doctors have said they think it was a reaction to the last dose of blood products for antithrombin III. The rash seems to be not as angry now but still there. Hopefully it will fade in the next few weeks.

He seemed to be going really well and getting out and about, doing a bit of schoolwork but when he finished taking the steroids(Dexamethasone) this Tuesday he has gone downhill. He actually has till next Wednesday 25th without any chemo or tablets - this is sort of a mini break between the re-induction and re-consolidation phase. We think he must be suffering withdrawals from the steroid because his joints, especially his knees are in agony. Whilst he was on the steroids he was waking up at 6.30am every day (which is very unusual for him). Now that he's stopped taking them he is in so much pain he can't really sleep at all during the night. On Wednesday night he came down to us several times during the night saying he was in agony - he took a range of pain killers. Last night wasn't much better - he takes a strong pain killer that is supposed to last 4 hours but it takes about 20 mins to kick in and then he gets about 2 hours relief before he was getting woken up in pain again and needed to wait till he could take another tablet. I've checked with the hospital and we can up his dosage so hopefully tonight will be better for him and he gets some sleep. I keep trying to get him to have a rest during the day but he reckons he can't sleep.

We also found out yesterday that he has just become neutropenic. It seems strange as he hasn't had chemo for a while but I guess everything is catching up with him. So he won't be able to go out to public places for a while just in case he picks up an infection. His hair has started falling out again which is a shame because it had grown back quite well. Once again it isn't all falling out but getting quite thin in coverage. It was enough to make him pull out a hat yesterday when we went to the hospital to see Dipti so it must be worrying him.

They have been having trouble getting blood out of his central line for the past week so yesterday they decided to urakinase the line - which means injecting a protein which breaks up the blood clots that may have formed over the entry point. The nurse explained it like putting draino in the sink to clear the drains!!
He had this done once before in March. It seemed to work and they could get blood from each line afterwards. Hopefully it doesn't reblock again.

It was Murray and my 21st wedding anniversary last Thursday 12th August. As Luke was fine at that stage with no treatment happening we decided that we would head away to Bowral for a break on the Friday night. We decided Luke was old enough to look after Amy and she was old enough to look after him! They had all the family checking up on them over the 2 days also. As it turned out they had a good old time with Luke making a gourmet meal for them both on Friday night followed by bacon and eggs the next morning. We came home to a clean house (very surprising and much appreciated) and lots of shopping dockets for reimbursement for all that they'd bought! Murray and I had a fabulous time just relaxing and wandering around Moss Vale, Bowral, Mittagong and Berrima. We got home Saturday evening with some beautiful fresh bread from Berrima for soup for dinner.

That's about all our news at present. I'll update in a few weeks unless there is any other news in the meantime.