Friday 5th March 2010

Just a quick update of where we are up to.
Luke had his bone marrow biopsy on Wednesday. All went well - however he still doesn't seem to be affected by the sedation they give him to relax him - he's still wide awake. However he came home and went to sleep for 3 hours so for some reason the sedation worked a bit too late!
We won't know the results of the bone marrow biopsy till next week. I'm not sure with Monday being a public holiday in Canberra whether that will affect the timeframe. It will be from this result that we find out whether Luke is in remission.

He also went in for a CT Scan on his chest, abdomen areas on Thursday. This is for them to check again the scans taken when he first went to hospital to see what changes have occurred.

Luke is pretty good at the moment - however he has had a pain in the front of his head/behind his eyes for the last few days. Not a headache but more a pressure. We are thinking that it may be caused from withdrawal symptoms from stopping the Oxycontin on Tuesday - this was a 12 hours slow release pain killer that he'd been on for over 4 weeks(sort of like morphine). I've checked with the hospital today and they've told me to give him panadeine every 4 hours and if the pain is still bad tomorrow to take him back to the hospital.

I don't quite understand how the whole hospital situation works however he was discharged as an inpatient from the hospital and Outreach Oncology Service (OOS) on Thursday. We now fall under community nurse care and today we had a visit from a nurse who went through piles of paperwork. They come out weekly to visit if you require them however if you need a dressing or anything else between times you just need to call them.
The problem with that is Luke is due to be readmitted to the hospital next Wednesday as they plan to start the next consolidation phase of chemo. This will be a 9 week intensive chemo treatment that should require only Days 1 and 29 in hospital overnight and then visits into OOS to receive other chemo treatments generally 4 times a week. OOS will then visit us at home to take bloods and monitor Luke on our spare days. That's the plan but if he develops any infections he will be straight back into hospital.

So I asked the community nurse if they have to go through all this paperwork each time Luke is discharged from the hospital and they said no - his paperwork stays here at home with us and they just check in with us and come to visit according to the times he is discharged and not under OOS treatment.
Very confusing - sounds like a lot of red tape & bureaucracy to me!

We are still planning to go to Sydney on the 25th March to see the stem cell transplant specialists. As I mentioned before, Amy was not a compatible donor. They have searched the Australian register and again no compatible donors. However the good news is that there are 3 possible donors overseas. They asked me to fill out some medicare paperwork the other day so that they can continue with testing of these donors.
I don't understand all of the genetics involved - your stem cell doesn't appear to have anything to do with blood types - it's all to do with chromosones/genes. So somewhere in the world Luke has some doubles of him!!!

Dr Dipti just needs to check with the Sydney specialists that they want Luke to start the consolidation chemo before his Sydney appointment. If they say they don't then that will mean chemo won't start on Wednesday. So we'll just have to wait for some answers hopefully by Tuesday.
I'm going to have a few days off from blogging as there is not much else to tell you till next week. Have a good long weekend to those people in Canberra.