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).

Lauren back in hospital due fever

Early hours Saturday morning, Lauren was admitted back into the RAH due a fever. Sort of a relief she's at least in there, as with the seriousness of the current situation, at least she's right under their nose and hopefully the hireichy will be reminded of the need for speed, to knock out the bureaucracy in play.

Still waiting to hear further news about the trial drug. Taking far too long in my opinion. Will update more later, when I can. Busy day today trying to remove roadblocks!!

Oh yeah, dominant answer from last blog question - 24 hours max!!!

Communication from the RAH - what should we expect in light of the last communication?

What's a fair time to have regular updates on what's happening with treatment and transplant for Lauren from the Royal Adelaide Hospital? 24 hours? 48 hours? 72 hours? more?? So far since Tuesday, there's been ZERO. For something this important and stressful, I would have thought regular communication would be standard practice - what's your thought?
FB or email me please your thoughts as I'm sure we'll all differ to the bureaucratic approach.
Michael

Update #8 by Lauren........(I admire her strength!!!)

UPDATE #1 - We're back to square 1. Unfortunately the transplant, that I was meant to be admitted for today, has been delayed due to the leukaemia coming back and there being too many leukaemia cells in my blood. The reason they won't do the transplant is because if there's too many leukaemia cells, the likelihood of the new stem cells that they give me won't be able to settle into my body as the leukaemia cells would band together and kill them off pretty quickly which is not the outcome we want. So basically what needs to happen is for them to get me into remission again and as I'm no longer allowed anymore chemo because I've had so much in my life span options are becoming harder to find.

Luckily there is this drug on a worldwide trial at the moment. This was the drug that when I first relapsed my doctor thought I would be able to receive but unfortunately due to the nature of being in a trial I did not get picked to receive it, however now that I have gone through the trial and given data on the standard treatment (chemo) and this being a unique circumstance I'm in, my doctors are pretty hopeful they will get this drug within the next week for me to receive. This drug is not a chemo drug and comes with very few side affects (I won't loose the fluff that I've grown on top of my head for instance). And the way it works is by targeting a certain protein that's in the leukaemia cell which to me has always sounded like the better option so in a way I'm relieved that things have ended up this way - I've always had a good gut instinct about this drug. However the odds of me going into remission are once again a 50/50 or possibly lower chance as its still on trial. But of course I'm believing that this drug will get me into remission and if it does then as soon as I am in remission I'll go straight into transplant as the cord blood has now arrived and is being stored in Adelaide.

And for those who want to know how I'm holding up - in a way in really relieved and excited to try this drug that I really wanted at the start but at the same time this setback has taken its toll on my positivity because if this doesn't end up working then I'll have to look for alternative treatments overseas so please pray, meditate, reflect, send your love or whatever you do that in this weird and crazy world has the ability to create miracles. Because fingers and everything else crossed that this drug will be the thing that works and that my transplant afterwards will just blow cancer out of my body forever. ‪#‎fuckleukaemia‬ ‪#‎fuckcancer‬

(see yesterday's post for some recent photos)

Transplant postponed

So, Lauren was due to be admitted into the RAH tomorrow (3/6/15) in preparation for transplant on June 10. However, it's been called off for now as her last blood reading had blast cells present and they're not prepared to go ahead with transplant with these blast cells present. From a bone marrow biopsy a couple of weeks ago, blasts cell reading was 3% and not present in the blood readings. Whereas it is now in the blood reading.
Plan (on the run at this stage) is to give Lauren the trial drug that she missed out on at start of this relapse (due the hat drawing system bureaucrats use), get her blasts cells down to zero and take her straight into transplant.

Means she's not going into hospital tomorrow and we wait for the trial drug to get here. With a long weekend here coming up, can't see any movement at the station until next week. Not what we wanted to hear, but WTF do you do? The cord blood is here and ready to go for transplant. Just need to get her blast cells down first (fingers crossed!!)

In the meantime, Lauren has been busy getting out with friends as she has an immune system currently.

From a surprise get together with her AC Arts colleagues on Saturday, to her Canteen mates on Sunday and her Camp Quality family last night for a surprise dinner - thanks to the organisation skills of a certain brilliant nurse!!! ES!!

So more news next week at this stage. Been through this before and must say, getting numb to the 'left field' changes with transplant.

Funny, we've gone from wanting her to maximise time out of hospital, now we want her in there.....for the right reasons!!!

All quiet on the western front

Not much to report since Lauren left hospital in April. Things going well and to plan at this stage. She's been home and catching up with friends from Canteen and AC Arts lately, living a somewhat 'normal' life.

Today, appointments in preparation for the Stem Cell Transplant started. Tests, checks and game plans being discussed with respective professionals. More tomorrow and Wednesday and then a bone marrow biopsy on Thursday.
At this stage, transplant still planned for June 10 with Lauren probably being admitted into hospital (RAH) June 3.
In the meantime, except for this week, time to live a normal life some more before isolation post stem cell transplant in June. Can't remember if I said, but transplant is from a chord blood donation - don't know from which country.