Saturday 20th February 2010

Well we had our talk with the Doctor and although I'm glad we got some answers I don't think I was really ready for the responses.
We knew the diagnosis was Acute Lymphoblastic Leukaemia. We asked why Luke was on a high risk protocol and basically he is a high risk case. The reason he is high risk is a combination of his age, gender and most importantly in his case he has abnormal chromosones. (Murray is blaming mutant Airey cells - I think it's all the Elton's fault!!) In all seriousness though we were not aware he had abnormal chromosones and this makes his subtype of leukaemia rarer and puts him at a higher risk. On further reading just now it says that chromosomal changes are only found in leukaemic cells. They are not usually passed down from parent to child (inherited). Instead they tend to be acquired over time. (Don't ask me how that happens - it's times like this I wished I'd paid more attention in biology).

Luke is on a very intensive chemotherapy protocol for about 9 months and then he will go into a maintenance chemo (not as intensive) that could last anywhere from 2 to 3 years. That also was something we weren't aware of.
Luke's currently on a 4 week induction chemotherapy. This will take us to 1 March. The aim is to get Luke into remission. The doctor is very positive based on his blood results so far that this will be achieved. The problem however is keeping him in remission. The abnormal chromosomes will make this harder to achieve.
We will be going home and have 1 to 1.5 weeks before he comes back in for a bone marrow biopsy. This will be the most accurate way of knowing if he has reached remission.

We are going to Westmead Hospital on 25th March to meet the specialists at the Bone Marrow Transplant Service. They will advise whether a stem cell transplant is a viable option for Luke. We are lead to believe it would be a good option as his cells will be wiped out prior to the procedure and new stem cells transplanted. This should get rid of the abnormal chromosones. This will all depend on the results of the bone marrow biopsy, if Amy is a match and when he can fit this in around his chemo schedule. If Amy isn't a match they will need to search for a donor which will take time. There are however risks associated with a transplant but this will all get answered when we see the specialist. What did hit us hard though is that if he does have the stem cell transplant it will mean up to 3 months at Westmead!! (For those people overseas Westmead is a suburb of Sydney - over 3.5 hours away from our house). The Leukaemia Foundation have told us they have 2 bedroom apartments they provide for families that need to stay for extended stays. If this does eventuate it will mean a lot of travelling as Murray and I share looking after Luke and trying to keep Amy in as normal a situation as possible.

So we are a bit shell shocked again today but we just have to take it day by day and stay positive.

Luke has had a better day today - not as lightheaded. His blood pressure has been around 120/40. His blood sugar is also okay. He has had 10 bags of cryoprecipitate for clotting and is currently getting 2 units of blood as his levels have dropped again and looking very pale.
Blood levels today are:
Haemaglobin 80 / White Cell Count 0.9 / Platelets 164 / Neutrophils 0.24.