Sunday 7th February 2010

Luke ended up watching Star Wars last night till 12.15am. We went straight to sleep and he got interrupted for his temperature at 2am and then at 6am the nurses barged in and said "good morning Luke - time for blood!" He seriously thought about telling them where to go! We then went straight back to sleep and got woken up at 7.45am with the breakfast tray coming in and his oxycontin tablet (which is his 12 hour slow release pain killer).
Not long after that 20 tablets turned up. It turned out that he had to go back to the 8 tablet dose of prednisone (cortico steroids) instead of getting Dexamethazone via the central line. When I queried why I was told that the prednisone was the official protocol drug and they were just giving him a break from the tablets. He says they taste really rotten so he has devised a way to take a mouthful of apple juice, throw in the tablet and quickly take some more apple juice to swallow it down with - this seemed to work quite well this morning. The other tablets were the regular anti fungal, anti viral, antibiotics, panadol and some sort of sodium bicarbonate tablets to treat the acidity in his urine.

He's eating really well at the moment and keeps asking for more snacks in between meals. Having said that he got weighed today and he has still lost weight - currently 77.5kg.

His morning blood tests came back with levels of:
Haemaglobin 87 / White Cell Count 1.0 / Platelets 28 / Neutrophils 0.80. All down from yesterday. They came in around 11am and said that he needed 10 bags of cryoprecipitate. This is to treat fibrinogen deficiency (clotting agent). Cryoprecipitate is harvested from plasma.

Grandma & Grandad brought in lunch today as Luke had a craving for a crunchy bacon butty (sandwich for those who are not up with English sayings!!)
So we reheated the bacon for him and he devoured it in seconds then asked for the bacon scraps after we had eaten our lunch!

Amy and I left the boys for the afternoon and when we got home I had a call from Murray saying Luke had just received a "bee sting" - L-Asparaginase injection. We had diarised his chemo days off his protocol document and thought he had the weekend off but they assured us they were showing this injection as today. So we will have to check with Dr Dipti that we have been given a copy of the right protocol. He had a nurse who administered this injection nice and slowly and it didn't hurt as much.
I believe he has a lumbar puncture tomorrow however we need to check the details with the Dr.