Lauren's facebook update last night - not remission yet!

FIRST UPDATE AS A PROPER ADULT (Hope I don't have to act like one soon though hehe):

So, I'm pretty sure everyone now knows how I spent my 21st birthday yesterday. If you don't you've either just joined facebook or you're unobservant. 😜 The ‪#‎cranesforlauren‬ movement was and still is so overwhelming and unbelievable. I still can't grasp that 20,000 cranes are sitting in my living room, each one created with love and each one having its own journey to get to my place. So again, thank you to everyone who got involved, from posting a picture of an industrial crane to taking the time out to make a crane or to simply just say happy birthday - all of it has meant so much to me, words can only try to show how thankful I am! And I guess the biggest of Thank you's goes out to Jen Frith who started it all in the first place. You have made such an impact in my life and I will never forget yesterday and I know I've said thank you to you so many times already, but it never seems enough to express how I am feeling right now. So again from the bottom of my heart thank you!

Now onto some serious adult stuff. Unfortunately I'm not going to transplant next week as my biopsy results came back with residual disease that was so small they can't even put it as a percentage. BUT FORTUNATELY Pfizer have given me yet another dose of the magical drug Inotuzumab!!! This is because...
1. the drug is clearly working (it's just taking longer than expected but then that's why it's on trial right?)
2. I haven't really received any side affects from it apart from low blood counts.
3. If I was in America on the actual trial I would be receiving five to six doses of the stuff before going for transplant so the fact it's worked so well after 3 rounds and the fact I haven't had any major side affects helps pfizers trial data which in the end will help it get into Australia faster and yes that means more dollars in their pockets.

So as you can see it's not the best news but it's certainly a win win situation for both parties.
However, when I got the phone call from my doctor today I was totally disheartened because I was so sure that this was it, with everything that had happened over yesterday and the past week that surely I was in remission. So even though I seem quite positive now I definitely have had my moments today. But having 20,000 cranes surrounding me certainly helped me gain perspective.

So again thank you to everyone!! It has put such a smile on my face to know so many people are thinking of me and it has just brought so much hope and inspiration into my life! Thank you!
‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬
(And if you have a problem with the word fuck, well I have a problem with the word cancer!)

Happy 21st Birthday Lauren - Surprise #cranesforlauren

Today was a surprise 21st for Lauren with in excess of 20,000 origami cranes delivered from people all over the world. For the full story, look out for the Cranes for Lauren group on facebook, started by Jen Frith as a way of providing support and encouragement to her 4 weeks ago. Since then, the group has grown to over 3,800 members all over the world and thousands of photos with cranes from all major international travel spots. If you'd like access to the group (unfortunately because it's so big, Jen can't change its status from 'secret' to 'public') - just send Lauren or myself a facebook message and let us know you're email address so we can invite you to it.

Is on channel 7 news in Adelaide tonight...6:00pm
Also in tomorrow's Advertiser and Eastern Courier/Messenger tomorrow too.
View #cranesforlauren of social media...facebook, twitter etc

Here's some pictures from the group to give you a taste.

1,000 origami cranes and a wish

Lauren's in for her bone marrow biopsy this morning. Before going in, she finished making her 1,000th origami crane, a goal she had to be granted a wish. Here's her words from FB this morning:

An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane. Some stories believe you are granted eternal good luck, instead of just one wish, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy creatures (others include the dragon and the tortoise) and is said to live for a thousand years: That is why 1000 cranes are made, one for each year.... ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬ ‪#‎makeawish‬ ‪#‎1000origamicranes‬

This was one of her goals on 100things.com.au - #21. Make 1,000 origami cranes - tick

On her Pre-Operative Assessment form this morning for the bone marrow biopsy, love her answer to the question of 'any other serious illness'? Her response:
"ALL Leukaemia (although there shouldn't be anything there now - (fingers crossed)." I look forward to her being proven correct!!

Bone Marrow biopsy is this Wednesday

Last post (last week) I mentioned Lauren's bone marrow biopsy was being done last Thursday. I'm starting to get enquiries about the results, so just to let you know, that bone marrow biopsy was moved to this Wednesday, so results should be out sometime next week. Fingers crossed for a positive result and successful way forward from here. Her 21st birthday is tomorrow week (28th Sept), so hopefully we'll be able to give her a great 21st Birthday present in some very welcome and encouraging news!!

Inotuzumab - last treatment, last Thursday

Lauren had what should be her last treatment of inotuzumab last Thursday. Third treatment of third cycle. This is the test drug she's been on to achieve remission so we can go to transplant. Bone marrow biopsy booked for next Thursday, so we should know more week after next.

Lauren has been home for the last 3 weeks which has made everything a lot easier and helped her positively as she's enjoyed some freedom and taking my car out and burning a couple of tanks of petrol, "just driving".

We've passed 20,000 views, so I guess we need to keep going with this blog.

....an update, at last!!!

I haven't done any updates for a couple of weeks because Lauren was in hospital and things were trending to the tricky side.
It was a blood nose which took her back into hospital and a fever. Then she ended up with an infection - cellulitus which was looking bit tricky seeing she had no neutrophils (no immune resistance). This led to six brave volunteers being tested on a Sunday afternoon for matching A+ blood to do a white cell transfusion direct to Lauren the following week, if still required. The good news is:

a) we were inundated by A+ candidates who were made aware of our search (we had over 50 candidates in less than 24 hours!!!). My apologies if I didn't text, email or return everyone's call. I tried to make sure anyone who made contact, left voicemail messages etc received a response, but I got literally inundated with calls - all the for the right reasons!! Thank you to all for stepping up so quickly and putting their name on the list, knowing full well it would mean some inconvenience. The six were blood tested on a Sunday afternoon, a couple of weeks ago now (from memory)

b) The better news was that by Monday after that Sunday of testing, the treating Doctor made the call the white cell transfusion wouldn't be required because the antibiotics had finally kicked in and showed signs of stopping the spread of the cellulitus. So our brave 6 didn't need to go any further. Here's a photo of our brave 6 (one had already left before this photo was taken - some known to us and some complete strangers who heard of our need) - some amazing people out there!!! - THANK YOU to everyone who made contact.

Those same antibiotics (this became known in hindsight) gave Lauren a crook gut which carried on the full time she was in hospital, until she realised how it stopped when she did a home visit for dinner last Thursday and hadn't taken them. So much so, her gut cleared up immediately and she came home on Friday just gone. Her facebook update follows:

UPDATE: I'm finally home and have started my third cycle of izotuzumab last Thursday and will have another 2 doses over the next two Thursdays and then the following Thursday another bone marrow biopsy. Let's hope this time there's absolutely not one leukaemic cell to find. AlI this will be done as an outpatient at the RAH cancer day centre.
However, I got to admit it's getting hard now, especially during the past admission to hospital, to keep my head up - I just want to be better already and I'm getting frustrated with all these 'road blocks' I seem to keep hitting. And this feeling has been intensified with me finally being off the steroids (yes piggies you are finally safe from my bacon fettish) - that shit messes with your mind and emotions let me tell you. So no not the best week but I'm so thankful I'm home now... Hopefully that will help me get back in the right mindset. As for now it's just making sure I don't spike a temperature so I don't land myself back in the RAH so I'm staying away from people and shops and what not so that doesn't happen. ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

She was well enough to drive my car yesterday while I attended the Leukaemia Foundation SA conference. Was a very professional event on treatments and much more, with great speakers - one a good support to Lauren and herself a previous Lymphoma sufferer - Chrissie Page. She did a great job speaking of her experience going through treatment. Well done Chrissie!!

....and unbelievable, we're on our way to 19,000 views!!! That was quick growth in numbers....who are you??

BIG UPDATE (by Lauren): I have some bad news BUT I also have some good news.....

BIG UPDATE: I have some bad news BUT I also have some good news.....(Wed 12 Aug)

Unfortunately I did not get into full remission with 2 cycles of the magical IZOTUZUMAB....

However, It did bring my bone marrow leukaemia blast count down to 5.5%, which means the drug actually works and it has hardly messed up my liver, kidneys or heart which were the main side effects that my doctors were worried about. AND because of all of this, here is the good news....
Because the drug has worked and worked so well on me, the drug company want to give me another cycle of IZOTUZUMAB under compassionate exemption!
It's a smart move as it looks better for them and the drug and their trial if the outcome is a positive one and with one more cycle it appears that it will be. Plus under the usual circumstances of the trial over in the UK if a patient is going to receive a transplant they can have up to 5 cycles (as long as the side effects don't get out of hand) to get them into a full remission.

Soooo basically not the results we were looking for but pretty damn good results at that. So my third cycle of IZOTUZUMAB will start sometime within the next 2 weeks . YAYYYYYY!!! So really it's good news!
And as for me at the moment, I have landed myself a stay at the Royal Adelaide Hotel again and it appears I've hit a little bit of bad luck with things not going to plan at the same time.
So as you all know I had a bone marrow biopsy last Tuesday and a side effect you can get from that is getting pain down your leg or in your coccyx and this pain I got was bearable until last weekend when I couldn't sit or put pressure on my left bum cheek, couldn't walk or go to the toilet without being in immense pain.
So on Sunday visited the docs on the ward to get it checked out and to receive higher pain killers. That all got sorted but while I was there I had a blood nose so they decided to give me some platelets (the cell in your blood that helps with clotting and stops bleeding) even though I was meant to go in the next day (Mon) to receive some anyway. Basically that meant on Monday I didn't need to go into hospital to receive any platelets.

But unfortunately on Tuesday, whilst home, I got another nose bleed that just wouldn't stop bleeding so ended up going into hosp to receive some more platelets so that my nose would stop bleeding. However I also decided I had missed the place so much that I thought I'd spike a temperature and because I have no immune system at the moment that means immediate admission and onto antibiotics.
So I got my platelets, got admitted and the antibiotics but the nose bleed did not stop and ended up being 4hrs long in total. (that has to be a record surely!) To fix the gushing nose the ear nose and throat guys rocked up and in a nutshell put 2 inflatable tampon looking things up both my nostrils and then inflated them with some special liquid to 10mm in diameter - yeah it hurt like a bitch and still does because I still have them in and let me tell you, the sinus headaches that come with it aren't pleasant either - but perks of being in hosp means I can have all the amazing pain killers!
But this has certainly been some of the hardest few days I've had to go through but I'm getting through them - and with me almost off the steroids completely it is getting much easier.

It can only go up from here right? And even though the news today is not what we were expecting - all in all it's actually amazing news and I think I've told you all everything seems to happen to me in threes so it only seems logical I have another cycle. Anyway I'm slowly falling asleep as I type this as 10min ago I just had some lovely oxycodone and I think it's starting to take effect. Anyways night and ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬
Like Comment Share

Another bleeding nose yesterday and temp brought her back into hospital

Yesterday Lauren had a persisting bleeding nose - didn't stop in the 4 hours I was with her and a platelet transfusion hasn't stopped the bleeding either. Looks like something else which they'll hopefully work out today. They kept her in because of the nose and she's spiked a temperature.
Today we find out the results of the bone marrow biopsy from last week, so big day.

Interesting stat on this blog - number of views from Feb 2015 to now is approaching 18,000 - I'd like to know who you 18,000 are!!! That list has grown a bit from the 100 or so I started as an email list back in 2007 to reduce the phone calls to home about Lauren's progress then!!