Waiting on much needed information from the RAH today

We have a potential solution for treatment for Lauren in a drug from Pfizer. However, because of different comments about this drug from staff at the RAH we are seeking answers to all the alternate treatments available and urgently. Emails have been going to the Director at the RAH and back (however answers to the requests remain outstanding still). Irrespective of what path we go down and any outcome in Lauren's treatment(s), these answers are required. Surely we have rights as Australian Citizens to make enquiries in the best interest of treatment for our kids!!.

Lauren came home for day leave yesterday which was wonderful. Ate the house out of bacon. Pigs out there, watch out!!!

Thank you to those who have underwritten any overseas treatment. Please don't go away right now as the seed funds may still be required this week for Germany. We will advise. We've said it already but huge thank you's to many for their help. Huge story here on it's own.

Also had a call from Amgen Saturday afternoon. The drug is not coming from them to us in Australia. However we can access the same drug in Germany and the USA. Crazy, I know. I understand what they're saying but certainly do not agree with it. Laws and protection for Australians is required by our regulators before we participate in medical trials and how they measure their statistics and when and if someone can exit the trial!!! I personally would not participate in them under the current regulators rulings and these rulings need major overhaul. This the press need to know about for the protection of all Australians!!! Unbelievable how it works. As the representative of Amgen said "if you're participating in a medical trial, you are being totally ultraistic by doing so". Much more needs to revisited here.