Rescued by the Germans!!

The information I've had on request from the RAH Executive never came yesterday (disappointing). After an email I sent to the University Hospital Wurzburg bounced, I frantically tried to access a correct email address and name of the treating physician from the RAH Executive, only to be told: "Our international links are very very valuable in these situations and I really don't want to put them at risk because of what can be interpreted as being a local Australian issue."....you know..... it's not the person, the system and the institutionalisation of people is at fault (no, it stinks!!). But who owns this?? No-one seems to own anything these days.

Anyway, through great work from my partner we tried a few other email addresses in Germany and one found its way to the correct medical team and they answered all the questions (and an extra one), in writing, and within hours of me sending them - a fantastic effort for such a huge hospital given it was night time for them when I emailed. Have a look at their website and you can see why they are a centre of excellence in many fields. Thank you Max for your most welcome and professional assistance last night (our time). Why the RAH didn't supply the answers to me when asked and refused to give me the details of the team in Germany, I don't know. I wonder if we'll ever know?

Anyway, we have a good and proven, best option for Lauren going forward via the Pfizer drug, inotuzumab. I don't know what I can say about Pfizer coming to the party but we appreciate the RAH Medical team sourcing this solution.

I'm glad this last week is over. We went from a discussion of options with a medical team at the RAH last Tuesday where it was suggested we might like to start discussions with palliative care to a way forward for treatment. What a week!! Now it's up to Lauren to take the baton and take up her fight and get through this to a successful outcome, as she will. This is where the support of her great friends will be important. Last night a much relieved Dad called into the hospital a little late, and a beautiful daughter said, "come and sit beside me, I want my father back!".

This last week reminds me of the quote:
“The only thing necessary for the triumph of evil is for good men to do nothing.”
― Edmund Burke

We have seen so much goodness/greatness from so many people this last week, the negatives seem trivial in comparison. From raising (or at least having it underwritten) AUD $400,000 - (wasn't that much required in the end, when the Germans responded) from various people who stepped up, from the support of the politicians and their fantastic staff, to many who have supported our entire family in so many ways - THANK YOU!!

I don't know who owns this cartoon, but perfect for this last week:

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.

Fund raising on hold for now (so ignore this morning's post)

Amazing day. I'm pretty sure we have enough from people and businesses to underwrite us for the cost of any overseas treatment if required. Am therefore stopping the fundraising for now and once we know if we are definitely going or not, will pay via those willing to help underwrite and then repay them whilst Lauren & I were away via fundraising back here. So great outcome to at least give us a parachute if it's needed.

There are things still happening behind the scenes including a possibility of a drug availability. At this stage we're still planning around a worst case scenario in terms of costs and treatment, which if needed at last minute, our underwriters will fund initially and if it improves, well it might be less or nothing. So ignore funding details on previous post unless you hear differently from me via this blog.

Thank you for the phone calls today and ones to Julie. I wouldn't pull this funding if I wasn't sure the people concerned were not sincere in their support. Unbelievable how this has all transpired in less than a week. If you are wondering why I never put a figure on this morning's post it is because I'm still seeking clarification from the RAH of the actual correct figure.

A boring day would be very welcome right now!!!

Fund Raising details

I wish I could write everything going on right now here. Will do after this is all over. Where we're up to right now is:

i) still trying to get Amgen to release their drug for treatment for Lauren here in Adelaide. They have not approved it still, and we don't know the official reason yet for the 'NO' response to date. The first one via the RAH was about pharmaceutical companies 'protecting their statistics' to make the drug look as good a possible when they go for PBS participation at Government level. The second was because of a clause in the trial Lauren signed before going on it. A clause I don't know what it is but have asked for a copy from the Director at the RAH. A clause the medico who suggested the trial didn't even know was in there.

The current behaviour of AMGEN's executive team is nothing different to how an assassin would operate (in my eyes).

An assassin (I'm no expert on this BTW!!!) would no doubt:
i) have a target
ii) explore options
iii) make a decision
iv) execute the plan
v) have an outcome

In AMGEN's case,
i) they know about Lauren
ii) they could choose to provide the drug or withhold it
iii) at this stage they have chosen to withhold it (official reason I still don't know yet!!! - unbelievable in itself!!!)
iv) work in progress
v) their decision will either give Lauren a chance of further treatment or certain death.

How is their approach currently, any different to an assassin??? Please what do the people really think?? They're approach to date is nothing short of criminal.

I know trials are an important process to get life saving drugs to market, but I'm sure the rules around them, and protection for participants and all Australians (the world for that matter!!) needs to be carefully scrutinised, at the end of the day, and all Australian (even global) citizens must be protected first and foremost. Right now, my experience is DON'T participate in pharmaceutical company trials where it could be a life and death situation. Now's not the time to put my energy into this, but this will be parked for a visit later. I always said, even when I worked for them, "never trust an institution"

ii) Pfizer have a drug which we were told by RAH was an option, then it was a not, supposedly because it was a 'failed drug'. Turns out this is not the case and the RAH are still waiting to hear if we can access it for Lauren. Not sure what's been done on this front to date, but have followed this up with a Director at the RAH.

iii) if we can't get either of these drugs to use here in Australia, we'll have to go elsewhere for treatment which involves massive cost (which we can't cover without fundraising). Time is an issue and we must move fast. Either way we'll need funds for purchase of the drug (possibly even for option i & ii above). Some people have started seed funding (underwriting) the cost (this in itself is a massive story to be shared later) and will be repaid by fundraising carried out now and ongoing. Anyone who's been asking how they can help, this is how you can. We have to be in a position to pay a huge amount by next Friday.

Nathan, our beautiful 13 year old son has already offered his bank account and gone to the headmaster at school yesterday because he wants to do some fundraising activities to help save his sister!!....I can't help but cry every time I think of his selfless act. - Do these drug companies not have a heart to understand one iota the destructive impact they can have on people's lives from distant decisions made in their board rooms around the world!!! Why do we as the people allow this to continue?? - another one to park for now.


Fund raising has been set up via the Leukaemia Foundation South Australia. There were several ways people can donate, but that's on hold for now thanks to the generous support from some, in underwriting the required sum (albeit, we still don't know final figure confirmed via RAH).


XXXXXXXXXXXXXX funding details section deleted XXXXXXXXXXXXXXXXXXX


Thank you to all those who have been on our backs for this info. Thank you from all of us in advance. If you want to make a donation only if the money is required for the drug or treatment, but if not used you want it back, that can be facilitated too. Just talk with Simon and his team at Leukaemia Foundation SA. When depositing money please give your full details and contact so if for any reason we don't need the funds or there is excess, it can be refunded if you choose. Either way, it won't be coming to us personally.

Re involving the press etc, please leave that with us for now as there are a few hurdles to jump on this front (not created by the press).

Like I said in a previous post, in this last week I've seen the worst of humanity via the 'institution' and the absolute best. If I cry at night, it's not for fear of Lauren's future, it's from the unselfish acts of so many who we hadn't even asked for help yet!! Many unbelievable stories to share here......look out for the book - maybe that can be my fundraiser for the cause!!!

Please Company XYZ (not real name) say YES and NOW, PLEASE!!!!

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.

Unbelievable

So much happening, haven't even got time to fit it all in here right now. Here's what I put on facebook this morning - will explain it all later.

11 Jun 2015 ~7:00am CST:
Yep, same again today. Just less sleep this time. So much happening. Seeing the worst of mankind (via institution) and seeing the absolute best from people not even being asked for anything yet, politicians saying how do we help and actually taking action. ‪#‎fuckcancer‬ ‪#‎laurenlives‬

((I put this (wording above) with this picture I saw on facebook yesterday - not sure who it belongs to but great work (not mine)))

Today was meant to be stem cell/bone marrow transplant!!

How quickly life changes. We've gone from a procedure to try and cure Lauren's leukaemia via a stem cell/bone marrow transplant which should have been happening today, to fighting money making institutions to have any chance of getting back to square 1 and save her life, where we can revisit a stem cell/bone marrow transplant.

Feeling inundated with all the suggestions - too many to follow. Sorry if I don't get back to everyone just yet - funny the reason I started the blog years ago was to cut down the phone calls for updates!!! Now it seems to be creating questions....I know, all for the right reasons from concerned people. Just please don't expect calls returned right now. Thanks, Michael

Trial drug access denied (company 1)

Today we finally heard official confirmation access to the Trial Drug (phase 3 in Australia) is not being allowed access to Lauren for treatment by the pharmaceutical company who own it. Not sure if this is real reason yet but because they don't want their trial statistic results jeopardised when they go for drug subsidy validation with the Aust Govt. I hope this is wrong. I would have thought accessing this way would be outside their trial and therefore wouldn't effect the trial results. Just goes to show how much these institutions really care (not) at the end of the day. Money first, people second (or do we come further down the pecking order?) Not prepared to name them yet in case they have a change of heart.

Towel hasn't been thrown in, but time is of the essence right now as Lauren's blast cell count will only grow with time and we can't supposedly administer more chemo.

RAH has requested access to another trail drug they're not part of the trial for from another pharmaceutical company - we're still waiting to hear their response via the RAH at this stage. Not prepared to name the companies at this stage - neither the one who's knocked back access and the other we're waiting to hear from (only a new request).

Thank you to all who have offered support in contacting MP's, companies direct, change.org, the press - once we know outcome of second drug company giving access to their drug will follow some of these up. An MP I met with today (I don't want to name him only because if this goes pear shaped, I don't want him seen in a negative light as he and his office have been excellent. One of the few genuine MP's who still acts for the people, his constituents, rather than getting as much as he can from the 'system'. They've helped, offered more help and genuinely interested in taking out roadblocks. More dialogue with him tomorrow.

Lauren... I wish I knew what to say to her right now, to take the hurt away, but only thing I can do is try and deliver the right trial drug with the right people's help. Once it's administered, it's up to her to deliver the remission so we can go to transplant. I wish we could stop time whilst this plays out!!! As many of you have already noticed from her Facebook posts, she's pissed off but not throwing towel in!! We've come too far to simply lay down and make it easy for some!!!

Great to see her many friends keeping her afloat right now.....not to mention family, Haven't mentioned the role being played in particular her Grandmother who's been living in Adelaide helping and spending supportive time in hospital with her. Family in Sydney, please keep in touch with Mum (I know you are, but she needs it too as does Kate and Nathan right now).