Friday 26th March 2010

We have had a busy week. Last Friday 19th, Luke had a lumbar puncture under x-ray. It seemed to go quite well. Although Luke still has had a fair bit of pain in his back throughout the week.
He had another lumbar puncture today which didn't go as well. Even though it was under x-ray they still had trouble finding a spot as he has scar tissue and a hematoma in his back which they aren't concerned about. They ended up going into his spinal fluid a bit higher up and it worked okay. He's really stiff again and we are calling him "Mr Shuffles".

They urakinased Luke's central line and it appears to have worked and blood is now coming through the line so that is great news as we keep hearing of so many people getting infections and having to have them taken out.

Luke's been feeling really lethargic this week and I can understand why when we went into hospital on Wednesday. His haemaglobin had dropped to 66. So they arranged to give him 2x blood transfusions and platelets. So what was meant to be a half hour in hospital for an injection at 12.30pm turned out to be 9 hours while we waited for the initial blood test and transfusions. Murray ended up coming and relieving me at 5.30pm as I had a throbbing headache. So the boys walked in at 10pm last night. We were glad that he had the transfusions though as we had to go up to Sydney the next day.

As it turned out today we went in for his lumbar puncture and they took bloods in the morning before the procedure. When we came back they said his levels were still low (77) so once again we had 2 x blood transfusions and platelets. Another long day at the hospital and we emerged 8 hours later.

His blood levels for the past week have been:

Haemaglobin: 20/3 - 95 / 22/3 - 82 / 24/3 - 66 / 26/3 - 77
White Blood Cells: 20/3 - 4.3 / 22/3 - 4.8 / 24/3 - 2.1 / 26/3 - 1.2
Platelets: 20/3 - 118 / 22/3 - 74 / 24/3 - 31 / 26/3 - 22
Neutrophils: 20/3 - 3.4 / 22/3 - 4.35 / 24/3 - 1.35 / 26/3 - 0.53

The latest blood results today also show neutrophils of 0.53 - this means Luke is just about to tip into neutropenia. So he will be prone to picking up infections very easily. So the best advise is that if you are feeling unwell please do not come and visit Luke at the moment.

So now to update you on the visit to Westmead's Cancer Care Clinic to see the Stem Cell Transplant Specialists. What a long day! We left around 9am and got to Westmead at 1pm. We decided rather than have lunch beforehand (we'd had a snack around 11am) that we would should make sure we got parking and knew where to go for our appointment at 1.30pm. We got in their early and filled out all the paperwork. It got to 1.45pm and I asked if they had any idea how far behind the doctors were running and the ladies at reception said they were still making up the file and that the doctor was aware we were there. At about 1.55pm we got sent to Clinic 3 only to find another waiting room! I think it was about 2.30pm that we got into see the specialist. We left Westmead at 3.30pm (after lunch) and got home around 8pm.

So to the outcome of the meeting: After reading some paperwork and asking some questions he then had a general chat to us. It would appear that Luke is not a suitable candidate for a stem cell transplant at this stage. The reason being that he is responding well to chemotherapy and is in remission. As you know Luke needs to stay on chemotherapy for quite a long time to keep him in remission so a transplant would only become a viable option if he relapsed and the disease returned or if the abnormal chromosones returned and were not responding to chemotherapy. However the Professor did make the comment that one reason that makes it difficult for them to determine whether he is suitable for a transplant is because he had an uncommon grouping of abnormal chromosones - meaning they don't have any historical data against which to gauge their decision.

He did say that he would talk to the other professors at their team meeting on Monday to concur with them and that "his people would talk to our people" to advise the conclusion. At this stage the initial prognosis is a good thing as the Professor went through quite a lot of the risks and complications around a stem cell transplant and it's not something that you would want to rush into.
The other thing he said was that when Luke finishes this consolidation chemo round that he would ask Canberra for a bone marrow biopsy sample to be sent to Sydney to run a sensitive test (that can't be done in Canberra) to test for minimal residual disease. This test will show if there are any minor traces of leukaemia still in the bone marrow. If there are any minor traces or he relapses then they will reassess as to whether a stem cell transplant would be needed. So we really are back to a bit of a waiting game to make sure Luke stays in remission after this round of chemo and to see if any traces show on the test they will run in Sydney. This won't be until around early to mid May when this round of chemo finishes.

I'll update you all in a week unless there is something else to tell in the meantime.
We have Mum's sister, Mal, and her husband Les, coming to visit Australia from the UK next Tuesday. I haven't seen Mal since Murray and I went to England in 1991 and the kids have never met them so that will be great to catch up with them next week.