Last Update 6.10.2005 our contact is bedksl@mac.com 29.8.2005 Hamish was conclusively diagnosed with JMML (Juvenile myelomonocytic leukaemia) on August 23 2005. He was first seen at the Children's on July 18 2005, having presented to Bendigo A & E the day before. If you put JMML into google.com it will find some articles for reading. If you search google for google scholar that will find more scientific papers. Our specialist tells us the Children's results have been excellent in JMML. He will complete his first chemotherapy session of five days on August 30. 1.9.2005 Hamish and Kylie have been allowed out of hospital. At least to go to Ronald MacDonald house over the road from the hospital! Hamish is tired but coping well. Kylie is enjoying some freedom from the constraints of the ward. 4.9.2005 Karin Tiedemann (the specialist) was very happy with Hamish. His spleen had reduced considerably in size and he needed some platelets. Hamish is allowed home to Bendigo very briefly and then we are back to Ronald MacDonald House as it is very close to the ward in case of problems. 9.9.2005 We are home! At least briefly. Hamish had platelets last night after he developed some small haemorrhages under his skin. The specialist was happy for us to go home today...but back if Hamish is bleeding or has a fever. So while we can, it is lovely to be home. Next appointment in 5 days time in outpatiets. His neutrophils yesterday were about 600. Hamish is moving a bit, backwards at least, and very much better in himself. His tummy is softer and he is much more comfortable on his tummy! 13.9.2005 Yesterday morning Hamish had a temperature of 38.8 and we packed up and headed for Royal Children's. He is now back in the Bat Cave, very low white cells and he is now on three antibiotics, has had a bag of blood and is currently annoyed with a toy that is not responding as he thinks it shouldl! Despite all this, he is well and we are likely to be here for awhile. 6PM Today there are no neutrophils and 400 white cells in total, Hb 105 and platelets 45. Blood cultures from yesterday grew a bug so antibiotics continue full steam ahead. 14.9.2005 Today the temp is good and Hb 109, platelets 91, WCC 600 with 10 neutrophils. We wandered out of the Bat Cave yesterday, the junior doctor said that was OK! But the nurse in charge asked what we were doing out and about with Hamish who had had aggressive chemo and had no white cells to fight infection (severe neutropenia)? We lamely said the doctor said it was OK...well it was NOT and the junior doctor would not know the RULES! So it was back to the Bat Cave and stay put. We try and keep Hamish amused with some toys and we have some DVD's courtesy of Challenge, which is a great cancer help group. 17.9.2005 It is saturday morning, Hamish has had no elevated temperature for days and his white cells are slowly recovering. We hope to get some time at home soon! Hamish is playing on a mat on the floor with his collection of toys so he is happy. He has four different drip lines running into his Hickman's catheter (the drip that was put in before treatment started) and they get tangled like spagetti! Kylie is off to Dirty dancing tonight and Leslie went to the MCG last night. It is just Hamish that can not leave the bat cave at the moment. 18.9.2005 No fevers and the bloods improving, slowly. Neutrophils are .24 today, he needs more than 10.00 and Hb 111 with 404 platelets. We see Dr Teidemann tomorrow and Leslie is back to work monday. 19.9.2005 It is home to Bendigo on 20.9.2005 and back into the ward for chemo starting this friday! for five days... 24.9.2005 Yes it is Grand Final day and we are all in Melbourne. But, Hamish did have good blood counts yesterday and chemotherapy started again yesterday. We will see what happens Tuesday when chemo is complete. 28.9.2005 Home last night!! Due back to RCH next monday so it will be a good break for all of us. This is the last of the chemo for the moment and we have to wait for its full effects over the next 10 to 14 days. Thank you to all those who have rung and emailed with your thoughts and love. 6.10.2005 Two nights ago Hamish developed tiny bleeds in the skin, which he had last time, and this time he had two bags of platelets in Bendigo. His blood count was platelets 1, Hb 6 total white cells < 0.4 and neutrophils (which fight infection) < 0.01 ie nil. He will have a blood transfusion today and at this point (early on the seventh) has not had fevers. We are isolating Hamish, which unfortunately means no birthday parties at the moment. He looks well and indeed crawling around the lounge room! (we have moved the wooden coffee table) His counts will remain low for a few days yet, so fingers crossed. continued on page 2....