....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!!!

Post from 31/07/2008 - 7 years ago today!!!...........Update #25. Day Zero. Transplant DONE!!!!!

Transplant has been completed (Day Zero) around 2:40pm - 3:05pm EST. Hard to explain the feeling, but all done and Lauren sat through it talking to the team carrying out the procedure. She's surprisingly well right now, but we've been warned she won't remain like this and is now neutropenic (zero resistance to infection). She's still on morphine to manage the pain associated with Mucositis (see Update #22). The good news is no more Chemo!!!!! Yeah!!!!

Now we sit and wait for her new stem cells to engraft and reproduce like 'rabbits' as Kathryn said through a text message to Lauren. The next 10 - 28 days are key and her blood counts will be closely monitored to see what is happening with the formation on new cells. Graft V's Host conflict is a neccessity but hopefully won't be as bad as some stories we've heard.

By the way, anyone who saw "Saving Kids" on Channel 10 a couple of months ago, where a young boy was having a bone marrow transplant - the room they filmed the boy in is the one Lauren has now - a bit of trivia. We're also next door to another Adelaide family, Louisa, who may be going home soon, after a successful transplant.



HB 74
WBC 0.05
PLT 35
Neutrophils (N) 0.0

7 Years today since Lauren's first bone marrow transplant in Sydney

While we're waiting for remission to go ahead with Lauren's second stem cell transplant here in Adelaide, today marks 7 years since her first stem cell/bone marrow transplant in Sydney. No dinner tonight to celebrate another year of living without leukaemia. Next anniversary will be 1 year after her successful second stem cell transplant.

7 years ago today at Sydney Childrens Hospital, Randwick

31/07/2008

Update Last dose today, by Lauren

So today is the day I complete the second and final cycle of IZOTUZUMAB! Yes I am nervous but my leukaemia counts in my blood have remained below 1 for a while now so let's hope this final dose is what knocks my marrow completely clean and keeps it clean for 3 weeks!!! Next Tuesday I'll be going in for another bone marrow biopsy to see if IZOTUZUMAB did what it was meant to do (fuck my cancer/be a cancer slayer). And as soon as I know I'll try to update everyone. But I have this good gut feeling I am going to get into full remission with this drug and stay there. And even though I'm still very nervous about everything, I somehow have some peace of mind with this gut feeling I have been having. Let's hope my intuition is right and not just hopeful thinking...

As for everything else - I have been home and enjoying it. Cooking, movie watching, starting to get back into reading my acting theory books and surfing the internet (because I actually have a decent wifi connection now) are some of the things I do among all the appointments and tests I go to throughout the week. I've also started a transplant conditioning program with the youth cancer service because when you've been hospitalised for as long as people like me your muscles become de-conditioned so this program helps to get back some of that normal muscle strength. Then during transplant the program aims to try and maintain some or all of that - and new research is coming out about how beneficial it is, especially for youth patients, in the success of a transplant to maintain that conditioning so that's exciting as well.

I've also been trying to rest up a little because even though I'm home, I'm still not feeling great and that's why when people have asked to visit me or catch up with me I've said no. Also the weening off steroids is another thing completely and very uncomfortable at the moment. So if I say no it's because I don't want to see you when I'm sick - I wanna see you when I'm fully Lauren again and feeling good in myself. But the support I'm receiving from everyone is amazing and I can't thank you all enough for being there for me and all your lovely messages and tags on bacon posts (even though I still think bacon just as bacon is the best way to have bacon) and comments and likes. I see them all and it means so much to me so thank you.

So here's to the last dose of IZOTUZUMAB so I can get into transplant and get back to living the life I want and catching/partying/living it up with all of you guys again!!!! ‪#‎IZOTUZUMAB‬ ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Feeling like I'm Home Sweet Home - by Lauren

I AM FINALLY HOME! The doctors are happy with how everything is going and how my body is dealing with everything so today I finally got discharged from hospital! Will be going in as an outpatient to receive IZOTUZUMAB from now on. Feels amazing to be home and I just can't wait to sleep in my own bed tonight and hopefully in the coming nights hear some rain on the roof!! And no more hospital food - and yes more bacon (wink emoticon)

Anyway, for those who want to know more about the results of the bone marrow biopsy; unfortunately because I have had so many biopsies in the past most of what they extracted is just scar tissue (fibrosis they call it) so they don't know exactly how well the drug is working at all. Although, they did say that the leukaemia blast count was obviously lower than what they started with and that is what we are starting to see in my blood tests - yesterday they couldn't even put a figure on how many blasts were in my blood because there was only 1! Today it's gone back up to 2% so here's hoping the final two doses of IZOTUZUMAB in the next two weeks just smashes those pesky shits out of my system and puts me into full remission! And then if that happens the plan is 3 weeks for my liver to take a break from everything and then straight into transplant and then hopefully living a healthy life cancer free!

However, If for some horrible reason the drug doesn't get me into full remission or the leukaemia comes back within those 3 weeks I have to wait to give my liver a break, my doctor is looking into what's called Carr t-cell therapy. It's only available in America at the moment but has has had really great results for people like me who keep on relapsing with my type of leukaemia (T-cell Acute Lymphoblastic Leukaemia)! Basically in a nutshell they take my immune system cells (t-cells in particular) and genetically modify them with special drugs to recognise the leukaemia and therefore kill any and not let any grow in the first place. And even though I'm am hoping I will not need this option it's good to know there's still options there just incase.

But for the meantime it looks like IZOTUZUMAB is working it's sweet fuck leukaemia magic - lets just hope it's got enough fuck leukaemia gusto in the last two doses for full remission and to last 3 weeks afterwards!!! Yep you got it, I need a yoga instructor who can teach me how to criss, cross and contort my whole body cause believe me I'm trying to cross everything at the moment!! ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬