Thumb nail sketch of where we're up to. Will expand at a later date. Too much to write, right now. Lauren's only chance of survival (not guaranteed) is a non evasive drug as further chemo is not an option given the levels she's had already. The non evasive drug (will give name later - yes it's got the alphabet in it!!) is on phase 3 trial in Australia and is available in some other countries already.
We can access it from overseas but huge logistics and costs involved. We're looking at fund raising, as money (if this option only one left) has to be paid by next Fri. Just spoke to Julie and suggested we look at a company to underwrite us and we'll fundraise and pay them back. Can they help us by putting the money upfront. Tall order, but what do we do? However, we do not want any money given to us directly as we want to set up something arms length and controlled maybe by a charity so no-one can ever accuse us of profiting from Lauren's illness. Campaign #laurenlives
Either way, we will get this drug. Either the company concerned says "yes" we can have it here in Australia, which will save a lot of hassles (massive understatement) or we go overseas, despite the increased risks and isolation this brings.
We should hear from their USA parent today. I might be delusional (yes, I can see a lot of head nodding in agreement) but I'm expecting good news!!! However rather than get angry with them, can people who support Lauren show appreciation on behalf of our family by acknowledging an MP and Senator and their office for their tremendous support for Lauren. If they hadn't stepped in the way they have (and their key staff) Lauren would be going into 'P' care. I refuse to use that word - the suggestion from RAH on Tuesday this week - "to talk to them at least". I don't think people realise how institutionalised the western world has become!!
Anyway the second drug company has said no too, but I was under the impression it was because their trial (not in Australia) failed. But now the RAH are saying that is a possible option again, despite it being a 'NO' 2 days ago.
So hopefully today we hear some welcome news from Company XYZ in California. We will get the drug anyway, they could just make our lives a hell of a lot easier and remove some of the roadblocks of other ways to access it.
Anyway, can people please help us acknowledge the support we're receiving by maybe liking their facebook page or putting a nice comment on our behalf on their facebook page or twitter account. Everyone is asking what they can do, please show these two politicians appreciation for us. Call it #laurenlives campaign!!!
Andrew Southcott MP, Member for Boothby
Senator Nick Xenophon, Independent Senator for South Australia
Please don't tie up their phone lines or even bog their email system (we want them free to keep doing their great work!! Please put a positive comment on our behalf on their facebook page or twitter account under #laurenlives . Please do it as I want these two guys to know how much we appreciate their support and activity and their wonderful staff. Take action now please!!! I'm sure Lauren will enjoy seeing your support as she can watch your comments on their pages.
The things that have happened this week, I could write a book about. Fingers, toes, everything crossed for a good result today. Some good news and ability to move would be very welcome.
Friday, 12 June 2015
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You have a lot of people behind you Lauren who love and care about you. Your never give up attitude will ensure you get through this small window of your life. Having the politicians fighting for you too is wonderful to hear. I know things will turn out fine just keep the faith. Karyn xx
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