....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
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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!!

Waiting on results of last Tuesday's bone marrow biopsy

Lauren finished her second cycle of the drug IZOTUZUMAB a couple of weeks ago. Blood results of late haven't shown any blast cells in the blood pathology readings, which is encouraging. The results we're waiting for to decide where to go from here are the bone marrow biopsy which was performed last Tuesday. This waiting is nothing but shit. We should find out soon. Appointment is this Wednesday with her treating Doctor.

She's been home except for the occasional visit to the RAH for platelet transfusions. One bleeding nose particularly severe, she stayed in Emergency overnight - that took her straight into her bone marrow biopsy last Tuesday and home from there.
Only other unscheduled visit was yesterday due severe pain she was experiencing from the bone marrow biopsy. Looks like a pinched nerve or something similar. We know (myself and the nurses), Lauren has a high tolerance to pain, but the way she was this weekend, you could easily tell it was severe. Anyway, the pain killers prescribed are managing discomfort, which might last a couple to a few weeks. Hopefully that's all. Whilst in she got a bleeding nose again, so more platelets and then home again.

Her face is still puffed up from the steroids, even though she's being weened off them, so no photos. Her hair is growing back quickly and half her luck, much longer than mine (that happened after one day)!!!

So this week, we're waiting on the results of the bone marrow biopsy and then it's either go into transplant (stem cell) or look at alternatives. Everything crossed for the result to be REMISSION!!!