Lauren's FB post to close off 2015

LAST UPDATE 2015: So before this year is over I thought I'd just update everyone on what has happened and what is going to happen in the new year.

Basically as far as I know my T-cells that were harvested a couple of months ago in Melbourne through the Apheresis procedure I talked about are currently in the American Novartis lab right now as we speak and have begun the genetically modified process where those cells will be able to recognise leukaemia cells and therefore hopefully be able to kill them off. I'm also aware that now that this process has taken place they are starting to try to reproduce enough of these cells ready for a 'mini' transplant in January.

In the past month I have also received another dose of Inotuzumab in order to reduce my leukaemic blast count in my bone marrow a little so the success of this 'mini' transplant has its best chance of working. I have also received a little bit of radiation treatment on a lymphnode that was causing me some nerve pain down near my sacrum region and had some fatigue and bowel troubles with that but all in all everything at the moment is going well and good. Had a bone marrow biopsy last Tuesday to make sure the Inotuzumab has worked and will find out results from that next week.

As for next year, I will need to have another trip up to Melbourne on the 11th Jan for some routine physical examinations to make sure liver/kidney/heart etc are all working as well as they can. Then on the 20th Jan, Dad and myself will drive up to Melbourne again where I'll be admitted onto the ward on the 21st Jan for about a 4week stay for these genetically modified 'CAR T-cells' to be transplanted back into me. The first week consisting of some slight chemo to reduce any last leukaemic blast counts in the marrow and then it looks as though, if everything goes to plan, the the 28th/29th Jan will be the days that I receive the lifesaving genetically modified cells back. Then it's just monitoring me as it looks like I'll be the first Australian to receive this particular form of treatment so obviously they're going to take extra precautions.

As for myself, as mentioned before, I have had some side affects from the radiation and steroids which hasn't made me feel great but all seems to be getting better now, especially as they want to get me off the steroids asap again!
It's been nice as I have family from Sydney and NT over at the moment so while I have been feeling good have been able to attend things like picnics/Boxing Day sales and yesterday went to the Biggest Rocking Horse at Gumeracha. Also plan to hug a Koala at George's Wildlife Park.

Also been nice to spend some quality time with Adelaide family as well with A little Christmas surprise at the Oaks Plaza Glenelg with Mum on Xmas night and BBQ dinners with old family friends who are moving interstate.
But all in all 2016 is looking hopeful - I'm just so ready for recovery! I'm so sick of being sick and letting that get in the way of things I want to do but at least I can begin to see the light at the end of the tunnel clearer! Just gotta get through this last bit.

Anyway, I hope everyone has an awesome evening tonight and enjoys whatever they are doing to bring in this new year in!!

‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬ ‪#‎2016COMEATME‬

Bone marrow biopsy today

Lauren's in for a bone marrow biopsy (RAH - ADL) this morning - to see what's happened with her blast counts (leukaemic cells) from this last cycle of inotuzumab completed before Christmas. Hopefully it's brought her blast count down from the 39% it was in Melbourne when she 'qualified' for the trial by having at least a 5% blast count. We'll find out results with MRD reading later this week or early next week. The plan is she goes for tests in Melbourne on Jan 11 and we go for the transfusion of her T-Cells (genetically modified) on 20 Jan and transfusion planned for Jan 28 or 29 - can't remember which).

Her T-cells are in Philadelphia (I think) now and being modified today (Jan 29) in the laboratory. Then they'll reproduce these genetically modified T-Cells and the plan is for her to have these infused late January 2016 in Melbourne. Encouraged by the latest paper showing results of this new treatment, but at end of day 1% or 99% doesn't mean much until you know your daughter will live or not. Whilst I'm quietly confident it will work, I know this is the last roll of the dice under current treatment regimes currently being trialled. Hopefully those thousands of paper cranes and their associated wishes continue to work wonders!!!

Merry Christmas (post made to "Cranes for Lauren" FB group (the 'secret' one) - unfortunately we can't take it out of 'secret'

To those who made cranes for a wish in the lead up to Lauren's 21st in Sept, don't think your crane wish hasn't done anything. The treatment below (click here for details), Lauren is now on via Melbourne and might be the first person to go through the trial in Australia if all goes to plan. We go back to Melbourne around 21st Jan at this stage to go further in this treatment. See the boring stuff at www.laurenkupdates.blogspot.com.au

Thanks for your cranes and associated wish for Lauren and ongoing positive vibes - something's working. To think 6 months ago it was suggested she go to palliative care!! Far too premature!!!

Have a great christmas & here's wishing you & your family a healthy 2016 & beyond.
‪#‎cranesforlauren‬

24/12/15. Going into Christmas, Lauren is home, just in a bit of pain being managed by drugs from the radiotherapy. Otherwise she's off to Melbourne on Jan 11 for some tests prior to treatment commencing on Jan 20 at Royal Children's Hospital (RCH) Melbourne. Only last week a new paper was released highlighting the success in this trial thus far in the USA.

All the best to Christmas to anyone and everyone reading these posts!
Michael

Home again

Forgot to update. Lauren was discharged from the RAH (ADL) last Friday. Spent the weekend with Molly, one of her favourite Golden Retrievers. Dog hair on her clothes proves it!!

Radiotherapy for the tumour on her spine continues this week as does the third dose of Inotuzumab this Thursday - final dose ....hopefully forever. Thanks to Pfizer for providing this drug which has achieved what was needed at this time.

We head back to Melbourne (RCH) on 21st Jan to complete the CAR-T Therapy process (planned) at this stage. Should be over there for a month. If it goes to plan, Lauren will be the first person in Australia to go through this treatment, locally. A paper released last week in the USA with kids shows out of 53 treated with CAR-T Therapy, 94% have achieved complete remission!!! Thank goodness for research and continued progress. The eventual end of chemotherapy only gets closer as we progress further.

Funny how personnel at the RAH even make comment about how professional the team is in Melbourne (RCH) when they deal with them!! That's certainly been our experience and why we're happy to go over as often as we need to.

Not home yet, but hopefully not far off

I knew I shouldn't have said Lauren should be home by last weekend. She's still in (RAH). Had severe bone pain last week and this week which she's now able to manage with oral drugs. Not sure if this was the progression of the disease (leukaemia) as her blast counts had jumped in the bone marrow biopsy in Melbourne last week, or if it's nerves being pinched from the tumour on her spine - which she is now under radiotherapy for. Which is daily for two weeks (not three weeks as mentioned in my last post).

She had her second dose of Inotuzumab again today and that seems to be doing it's job. Blast counts (leukaemia cells) have disappeared from peripheral blood readings since being admitted into RAH last week.

In terms of next treatment for a solution, her T-Cells (immune cells) should be on their way to the USA today or this week for 'manufacturing' booked for Dec 29. This is where they will genetically modify her T-Cells to recognise a marker on her blast cells, then reproduce these in the laboratory and send them back to Melbourne for infusion - at this point we're planning for this in February 2016.

Thanks to Annie this week for an awesome massage she gave Lauren. It really helped.

Radiotherapy to start

Back from Melbourne on Tuesday and admitted into the RAH yesterday to commence a fourth cycle of Inotuzumab to reduce blast counts again (leukaemic cells). First round to be given this morning. Also this time she'll be having radiotherapy on her back as the lymph node is putting pressure on nerves. Will be a short session, 5 days a week over 3 weeks.

Should only be in hospital 48 hours for precautionary observation of possibility of tumor lysis and VOD (not video on demand, but liver functionality).
Hopefully Lauren's T-Cells will be on their way to the US soon for genetic modification and reproduction.

Anyone interested in reading up on the relatively new CAR T-Cell therapy see: http://www.cancer.gov/about-cancer/treatment/research/car-t-cells
If proven successful one day, could lead to the end of chemotherapy as a barbaric way of treating cancer(s).

I always said, in 100 years we'll look back at how we treated cancers and say how barbaric and primitive our treatments were back then (end of 20th century/early 21st century)....now I don't think it will take 100 years with the speed at which we're progressing in treatments.

In Melbourne (RCH), but heading back to Adelaide today

Lauren and I drove across to Melbourne (RCH) for a bone marrow biopsy yesterday to check if her blast cells (leukaemic cells) are at 5% yet to proceed with the trial. We don't have official results yet (MRD) but visual check estimates these at 39%. Sufficient to proceed with T-Cell therapy via the USA trial and Melbourne Children's Hospital (RCH). Basically cells harvested last visit to Melbourne (RCH) can go across to USA for genetic modification and reproduction of these cells. Will take approximately 8 weeks for this process.

Just found out these initial results this morning, so heading back to Adelaide today for possible treatment with Inotuzumab and steroids and others tomorrow at the RAH (Royal Adelaide Hospital) as a possible holding/reduction of blast counts until genetically modified cells are back from the USA. The plan is for these to be infused in Jan 2016 at this stage at RCH Melbourne.

Lauren was going to see the last recording of Hamish and Andy show tomorrow thanks to Renee at Challenge but treatment comes first. So trip here which we originally thought might be for the week, finishes today with a 712 Km drive home. Lucky we checked out of our hotel this morning - like it was meant to be!!

Still amazed by this hospital (Royal Children's Hospital Melbourne, RCH) and it's positive vibe. Even has a Meerkat display along with everything else.

Lauren's update on facebook today

So last week as most of you probably saw I was up in Melbs to get the first step of the trial out of the way (harvesting my T-Cells).

Last Sunday, Dad and I drove up to Melbourne but went pass the Big Lobster (Kingston S.E, SA) and the Big Koala (Dadswell Bridge, VIC) on the way there as I have this weird little goal to see all the official big things in Australia and I heard 'Larry' the big lobster was going to be pulled down at the end of the year due to repair costs being ridiculously high so it's been a matter of I have to see him before he goes! Although I did read in the paper yesterday the state gov has stepped in to fund his repairs. Oh well, we took the opportunity while we had it! If you missed the photos have a quick squiz at my facebook page. (for those without access to Lauren's FB, see photos on previous posts on this blog).

So we get to Melbs safe and sound and we were fortunate enough that the Leukaemia Foundation over there had one of their apartments in Preston free. After a bit of trouble working out the carpark and lifts and the maze of rooms we finally got to our little room and I was in heaven cause the beds were so comfy!!

However Monday, Dad and I were up bright and early as I had to be admitted to the Royal Children's so I could get knocked out and have a bone marrow biopsy and that lovely vascath I talked about in my last update inserted. AND THEY MUST OF KEPT MY UNDIES ON when they inserted it because after I came too (because of the smell of a Maccas Happy Meal Dad had kindly bought me), voila, I still had my undies!

The rest of Monday and Tuesday were like I said - lying around like a vegetable. You're not allowed to weight bear or move or pretty much do anything except for lie down and partially sit up when you have a vascath in. And yes that meant I had to pee lying down into a bed pan which yes was a new experience and I hope will be my last but if I ever have to again I'm buying one of those attachable chick dicks to make life easier.

But I was thoroughly entertained though because Melbs have huge TV/computer things in each room and they also have the Starlight Foundation Channel which basically plays kids movies 24/7. So streamed a bit of Netflix and watched cheaper by the dozen, despicable me etc. on the starlight channel. Also had an acting friend who has moved to Melbs to further her study come to visit and I can't deny but I loved catching up on those TBL family makeovers (wink emoticon)

Also found out on Tuesday that my bone marrow is only at 1.6% so we can't go ahead with step 2 of the trial but we could still go ahead with step 1 which was harvesting my T-cells (again for those who can't remember it's just a white cell/immune system cell).

So Wednesday consisted of me being connected to this machine that whizzed around at a certain speed to collect that particular cell. It's sort of like the gravitron for blood, the process is called Apheresis (I think that's how you spell it), And I'm the third person in Australia to have this particular cell harvested! And they got plenty of T Cells out of the collection!! Wooo!! So those cells will now be frozen and stored until I am able to proceed with step 2 and that will only happen when my bone marrow biopsy comes back with a leukaemia reading at 5%.

That night I was meant to have my lovely vascath out under midazalam (the truth/drunk syrup) BUT it didn't work. So I asked them to just pull the bloody thing out as I couldn't stand peeing lying down one more time and I wanted to change my undies! Ended up not being painful just a very weird and uncomfortable sensation.

Thursday, free from my vascath, they confirmed that enough cells were collected AAAND that Andy Lee from Hamish and Andy was in the building!! So I was able to go and meet him - the conversation starter being me shoving my phone into his face with the picture of him and Hamish with a crane and me being like 'remember this, that was for me!!!' Had a great time hanging out with him - he's so down to earth and veeeerrry good looking!! Shame he's got a girlfriend.

As I was free from the vascath now, I was also able to explore the hospital a bit more and found the patient garden where volunteers take the time out to give kids green thumb therapy which I think is awesome!! So I helped teach them how to make fairy pots out of a smashed up terracotta pot and loved doing so. My inner child just loves this place!

I also had an MRI later that night to check up on how my lymphnodes were doing as I've been experiencing some pain and discomfort with them recently. And just like the whole of this hospital, the MRI room is painted and decorated beautifully as an undersea themed room with these beautiful fish glowing out of the walls made out of fairy lights. It was so enchanting. I'll have to take a picture next time I have to have one.

The results from the MRI came back on Friday and all looked 'normal' as far as the doctor was concerned so they discharged me and then Dad and I drove home.

Will drive up again this Sunday as Monday I have another bone marrow biopsy to see if the leukaemia is at 5% or not and if it is will stay there the week having a number of pre-tests for the trial done. Otherwise, if below 5%, we'll probably drive back on the Tuesday/Wednesday.

So here's hoping my leukaemia has come back enough... (I still get chills when I say it)
‪#‎iloveyouleukaemia‬.................................................................................................................Only so I can ‪#‎fuckyou‬ and ‪#‎FUCKCANCER‬

Back in Adelaide

MRI scan was clear so we returned yesterday. Thurs Lauren got to meet a celebrity who had made a crane and photo - Andy Lee - from Hamish and Andy fame. He's so down to earth!! Comes in often off his own back and volunteers to meet many of the kids on the ward - what a champ.

He remembered making the crane and taking the photo for "Cranes for Lauren" - he said she must have a great support base because they were asked every day for over a week to do the same thing. Makes you wonder why these celebrities don't go and visit older patients too - I'm sure their days need just a much brightening up if they're in hospital. Clown doctors for adults!!! (Patch Adams - see movie with Robyn Williams)

Oh yeah, she got to see the clown doctors as well before leaving on Friday. The stupidity of it is actually refreshing. Who said hospitals have to be morbid - you can smile and laugh in them - many do at the Royal Children's Hospital Melbourne!! It is a fantastic hospital with equally fantastic staff.

The hospital also has an outdoor garden for patients to be creative - staffed by some excellent volunteers. See Lauren's fairy garden pot below....her first attempt. I'm sure we'll see more of these in the RCH garden soon!!

Leukapheresis procedure today successful (stage 1)

Good news, the number of T-cells from today's leukapheresis procedure was successful in extracting sufficient T-cells for the trial. This means Lauren doesn't have to bat up for this procedure again tomorrow. Lauren was the third person in Australia to go through this new procedure. This in itself is not a full solution, but the start of the journey to get to a new cure. Other good news is this procedure, if successful and if we are able to continue, might negate the original need for a bone marrow transplant. Thanks to Dave and Sophie for their professionalism and care today. Was great hearing Dave's 40+ years experience as a nurse and how much it's changed over the years in procedures and processes in paediatrics.


Tonight, they'll take out the vascath that was inserted on Monday to extract the T-cells as it won't be required going forward.

So tomorrow is just an MRI scan and hopefully we'll be OK to return to Adelaide on Friday. Back here Monday week, 30 Nov for another bone marrow biopsy.

At the Royal Children's Hospital Melbourne (RCH)

So yesterday saw Lauren book into the RCH to start the process of the trial just started here in October. This will happen in stages as Lauren doesn't fully qualify for the trial just yet. One of the stumbling blocks is she needs a 5% blast count (leukaemic cells) and hers have been under 1% thanks to the success of the trial drug Inotuzumab. Even with a bone marrow biopsy yesterday, her blast count is only 1.6%. So we'll have to wait before she can proceed to have her T-cells sent to the USA for genetic modification in the laboratory.

Aside from the bone marrow biopsy yesterday, she had a 'vascath' inserted in her groin which will be used tomorrow to extract her T-cells through a process which might take all day. Basically they'll run her blood through a machine, something like what you see if you donate platelets at the blood bank, extract the T-cells and put the rest back into her. These T-cells will be frozen until she has the required blast count so we can continue.

So tomorrow starts this new journey with the Leukapheresis procedure, which is easier here in Melbourne than having to go to the US to access it.

This hospital is amazing to say the least. Someone had a massive vision what a hospital should and could be in building this. It feels more like a hotel, looks like a modern office complex with shops and eateries on the ground floor - even has a cinema and meditation and prayer room and heaps to keep anyone occupied. It's so modern and what any hospital in any first world country should be these days. Up until now I was under the impression that only people living in the 1800's and early 1900's had any vision to build hospitals.

Turns out we should be grateful a response was never received when querying the RAH Adelaide medical teams' recommended switch from Inotuzumab (Pfizer) to Blinatumomab (A....). If Lauren had ever accessed this later drug, she would have been precluded totally from this trial in Melbourne. However, what's concerning is such a switch would have also have precluded her from the trial in Washington as well, where she was supposedly on a wait list for for the last few months. The trial being the same one. Just confirms that just because a medico says something, doesn't mean it is necessarily correct. People should be encouraged to question their treatment and any professional should be happy to respond to those questions.

The team here at the Royal Melbourne are extremely professional and give you confidence in how they approach their roles. No question is buried and openly encouraged by them. They even respond to emails in writing, which isn't a problem either - at all levels in their hierarchy! This is what all hospitals should be modelled on in admin and professionalism (from what I've seen so far). Makes you wonder what the centres of excellence in Germany and the USA are like?

Here's some photos of this hospital

The trip across to Melbourne was also used to achieve part of Lauren's goal to see all the 'Big things' in Australia. So we visited the Big Lobster, Larry in Kingston in SE (SA) and the Giant Koala at Dadswell Vic

MELBS ESSAY UPDATE (Lauren's FB post yesterday)

MELBS ESSAY UPDATE (not sure if it's under 1000 words, sorry!) :

Basically I have enough lymphocytes (don't worry just a fancy name for an immune cell) to go ahead with step 1 of the 'CAR T-Cell' trial in Melbourne. Was up there yesterday to have a whole heap of tests done as well as sign paperwork etc. with questions like have any of your past lovers been sex workers and the classic are you sure you are not pregnant 😐.

After flying back to Adelaide this morning will head off again to Melbs on Sunday with Dad where we will spend the week. Monday I will be completely knocked out (as children's hospitals are nice and put you under General Anaesthetic for everything) and have a bone marrow biopsy and a vascath (basically a bigger version of the PICC line I have in now) inserted into some big vein near my groin for the collection of my T cells.

Then Tuesday I will pretty much be a vegetable lying in bed waiting for some results to come back as you can't do much moving with this vascath thing in your groin. I've even been told I can't wear underwear 😥 just a nightie because of the bloody thing. So Tuesday I'm thinking will = Netflix.

If all the tests come back ok, Wednesday will be the day they collect my T cells - and for those of you who want to be extra smart this process is called aphresis (just don't ask me how to pronounce it) and I basically get hooked up to this machine via my lovely undie free vascath where one bit of the vascath takes my blood to the machine, which will somehow whiz around at the right speed to collect the right T cells, and then all the leftover blood and cells come back to me via another part of this charming vascath thing. This aphresis procedure usually takes four hours to collect the cells and if they don't get enough I may need to do a second collection but hopefully that won't happen.

After the aphresis I will part with my dear vascath by some nurse giving me this drug called madazaland (literally truth/drunk syrup as it's better known among patients) and pulling it out and the T cells collected will be frozen and stored until I have that 5% of leukaemia in my bone marrow where they will be shipped off to America to get genetically modified.

And yep I'm scared - absolutely terrified. At Least with chemo and Inotuzumab I sort of knew how it worked - drug goes in, side affects, drug kills certain cells, bobs your uncle if you keep positive. But this is so new and foreign to me and I feel like the world just keeps throwing all these extra challenges my way - I'm sick of being tested, I'm sick of seeing other 21 year olds having fun, looking pretty, flirting, going dancing, having lunch, finishing their degrees, making a path for themselves, not worrying about tablets or booking appointments for your PICC line dressing to get changed, not worrying about how the hell you're going to make your lovely little Afro look not like an Afro because when you were in yr 9 and had the same haircut some people used to tease you about it and not worrying about the lumps that continually start popping up on you like fungus because you are sick, because you have a disease and you have to fight it whether you like it or not. I'm so frustrated and angry and hurt.

But as hard as it can seem sometimes (and believe me it's so super hard somedays/weeks) I just have to remind myself and my fears to somehow be grateful. Grateful that I have an amazing support network of family and friends beside me, grateful that I still have options open to me, grateful even for the fact that my steroid fluid has come down so much I can now fit into my jeans again without busting the zip.

I really just want to invest all my hope into this new treatment and that it will finally work for me, but at the same time I'm so tired of investing so much hope only to be let down time and time again. But what else can I do. One of my favourite quotes is
'When the world says give up... Hope whispers, try it one more time.'
As for that here's hoping cancer finally receives the bloody message ‪#‎FUCKOFFLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Back in the RAH - because of wisdom teeth

Lauren went into the RAH tonight because of a suspected infection from getting her wisdom tooth out yesterday. Should only be a short stay, all things going well. Looked 100% better at 11:30pm tonight than she did at 5:30pm as she was running a fever and being sick, so couldn't hold down any fluid or antibiotics she was on.

Apparently her Lymphocytes are OK to proceed to stage one in Melbourne. So we're just waiting to hear when they want us over for the extraction of her T-Cells for freezing and then genetic modification and harvesting in the USA under their Car T-Cell therapy - science fiction stuff according to some who studied only 20 years ago in this field!!!

Gigantic Update (from Lauren's facebook post today)

GIGANTIC UPDATE (Goodluck reading it): I always know when to do another one of these because a lot of people start messaging me asking how I am going so...

last update was that I found two swollen lymphnodes (one in my neck and one near my sacrum) that were filled with leukaemic cells. For those of you who are going what the hell are lymphnodes - they are part of the immune system and are filled with lymphocytes (usually white cells in the blood) which help tackle any viruses or bacteria that enter your body. These lymphocytes often swell when they are working extra hard or if something else (like leukaemia cells) clog them up, hence the name lymph-node. Because of these nodes I could no longer continue with the next dose of Inotuzumab. And after talking with my doctor the Inotuzumab isn't a complete failure - my bone marrow still to this day only contains 0.1% of leukaemia cells which is fantastic - it's just a shame that the disease progressed to my tissue/lymphnodes and the Inotuzumab was ineffective in the tissue to prevent this. 

So what's the plan now?
Well when we first found out about the lymphnodes we thought we would be needing to go to America to receive cutting edge 'Carr T Cell' treatment BUT GUESS WHAT... It's been doing so well in America that the trial has just been brought to the Royal Children's in Melbourne - that's why I was up in Melbs last Wednesday. So after talking to the doctor up there, fortunately I'm not too old to qualify for the trial as the cut off point is 22, but unfortunately, I don't qualify for the trial just yet as I don't have enough leukaemic cells in my bone marrow. (I know, talk about backwards) So because this treatment is so new there needs to be a disease marker so they can see how well the treatment works against the disease and this marker is 5% of leukaemia in the bone marrow. However, I can take the first step and at least get my 'T cells' (a specific type of white cell in your blood) harvested and frozen ready to be sent and genetically modified when I do eventually end up on the trial. Hopefully that will happen sometime in the next month or two.

As for now it's just living life. My blood counts have been pretty good so I've been trying to get out and about as much as I can. In Melbs on Tuesday night, caught up with some family friends in fed square for dinner and almost laughed my head off, last Friday helped out selling bandannas in Adelaide CBD for CanTeen's national bandanna day, can finally do 10min at 9.7km/h on the treadmill and last night had the chance to catch up with all my third year actor peers around a gorgeous bonfire in Charleston!!

Not gona lie - the past 2-3 weeks have been tough because of not knowing a plan and when people say I'm so strong and optimistic it's because I only allow you to see what I want you to see - did you know I broke a light bulb/fixture with my shoe the other day because I was so angry at everything and everyone?? Well I guess now you do but I believe if you were in my position you would also somehow tap into this weird strength that people seem to see so vividly because you simply have to in order to live. There's no choice really, unless you really want to die.

Anyway I think that's enough soppiness for one day!! Haha but yes for now just trying to get out and do as much as I physically and mentally can! ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

The Royal Children's Hospital Melbourne

Lauren is in Melbourne today to investigate a new treatment/trial (global) which has commenced at the Royal Children's Hospital Melbourne. Sounds like Lauren is blown away by the infrastructure there. Even has it's own Hoyt's cinema!!

Anyway, funny looking back when we came to forks in the road re treatment(s) we went down some tracks, thinking it was the poor cousin within a trial, only to find out now, the fact some treatments weren't selected randomly has actually potentially opened new doors through new trials rather than closing them, which some drugs usage would have done.

The one the RAH gave me an ~88K euro bill for last week turns out is one of the drugs that would preclude us from these current new trials. Thank goodness someone there was arrogant enough not to answer the questions I raised to make an informed decision on paying the bill. Otherwise we might have gone down the wrong path!

This treatment effectively replaces the CAR T-Cell treatment in Washington Lauren was allegedly on the wait list for. No more 'flying under the radar' and hopefully explains why I never put those proposed treatments in the blog previously. Hopefully now we can operate with transparency. Not out of the woods yet, but seem to be possibly progressing again.

On a separate note, New Idea published the #cranesforlauren article last week - page 44 if you have it.

Not such good news today

I'm not sure the comment "I have relapsed again" below is technically correct as I'm not sure if we were ever given a remission status, but Lauren's facebook update puts you in the picture. Much happening behind the scenes. Lots of confusion and unanswered questions at the moment being followed up with the right people.

Lil Update: I have relapsed again. Found a lump on my left neck/shoulder area about 2 weeks ago, had an ultrasound and biopsy on it last week and I got told this morning it is leukaemia. Not sure what the plan is yet but I'm having further scans today and a bone marrow biopsy tomorrow to make sure it's no where else. Will let you all know more as soon as I know more. ‪#‎FUCKLEUKAEMIA‬ ‪#FUCKCANCER‬

#cranesforlauren

As mentioned in recent posts, Lauren was surprised this week for her 21st birthday with 20,000 origami cranes and photos from people all over the world wishing her all the best. Below are various news items (television and press) from this week. Unfortunately the 'Cranes for Lauren' group on facebook cannot be sent live and remains 'secret' because of some rule facebook has when membership is over 250. Cranes for Lauren is around 3,800 members.

Been a busy week and the cranes have certainly helped Lauren bounce back quickly from the news her bone marrow transplant (second) is not going ahead next week. We need to clarify the exact position of whether she is in remission or not with her haematologist which will happen in an appointment in two weeks. On the 'old' system of measurement, it appears she is in remission, however with a new screening now available, there are some blast cells still present <1 in 10,000. Will update this stuff after that appointment.

Channel 7 news (Mon night 28/9/15):
https://www.facebook.com/7NewsAdelaide/videos/1048817101815611/?pnref=story

The Advertiser (Tues 29/9/15):
https://m.facebook.com/story.php?story_fbid=10153210363156947&id=92701406946


The Messenger/Adelaide Now (Wed 30/9/15):
http://www.adelaidenow.com.au/messenger/east-hills/celebrities-among-tens-of-thousands-whove-made-birthday-paper-cranes-for-three-time-leukaemia-fighter-lauren-krelshem/story-fni9lkyu-1227547647854

Daily Mail UK (Fri 2/10/15):
http://www.dailymail.co.uk/news/article-3252913/Cranes-Lauren-campaign-fills-young-woman-cancer-s-home-colourful-Japanese-birds.html?ito=social-facebook


Rip It Up (28/9/15):
http://ripitup.com.au/culture/social-media-campaign-for-adelaide-girl-goes-viral#.Vg_VasbMcUX

The Australian:
http://www.theaustralian.com.au/news/celebrities-among-tens-of-thousands-whove-made-birthday-paper-cranes-for-three-time-leukaemia-fighter-lauren-krelshem/story-e6frg6n6-1227547647854

Sunrise Ch 7 (Thurs 1/10/15):
https://au.tv.yahoo.com/sunrise/video/watch/29688643/paper-cranes-carry-a-special-message/#page1

Michael Mills video (summary of day 28/9/15): (This is a great summary of the day
https://youtu.be/igQ5bouICXY

Photographs by Jo-Anna Robinson - Photojo
https://www.facebook.com/media/set/?set=a.509387095877914.1073741871.137573849725909&type=3

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
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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

Update Day 22 by Lauren

LIL UPDATE DAY 22: Unfortunately one cycle of Inotuzumab (that's the special drug I'm having) wasn't enough to get me into a complete remission. Even though I don't know the results from the bone marrow biopsy done yesterday, the fact that there were still leukaemic cells showing in my blood test means there will most likely be some leukaemic cells in my bone marrow still. So, we are going ahead with the first dose of cycle 2 today! (And if you really wanna know it's being administered at 2pm apparently haha)

However, some good news to hold on to - I only had a 4% leukaemia blast count reading in my blood test yesterday which is the lowest it's every been - so here's hoping 3 more doses of IZOTUZUMAB (I love saying it!) completely obliterates the last of these bloody leukaemia cells lurking around in my body! Will do a big update in a few days when I know the results of the bone marrow biopsy and more of the plan but until then I'm continuing my hardest to ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Lauren's 'small sample' of 600 photos she has for her room wall in transplant.

Update Day 15 by Lauren

UPDATE DAY 15: Exciting Times Ahead! The third and final dose of cycle one of my Inotuzumab (such a wicked name for a drug) will be administered today and here’s hoping it absolutely obliterates all the cancer cells from my body!! Unfortunately though we won’t be able to tell if one cycle has worked enough until we find out the results of my bone marrow biopsy which will be happening on Thursday this week. And we will probably find out the results of Thursdays test on Monday - Don’t worry, I’ll keep you all posted, but I really do hope that this one cycle has done the trick so please today and Thursday send all the positive vibes/prayers/thoughts/meditations, whatever you have all done so amazingly over the past 5 months for me!! The power of human thinking is something that I will never underestimate so keep it up and thank you thank you thank you! I am so super lucky to have such an amazing network and support of family and friends!! You guys are the reason I’m in such a good headspace and am doing so well! So thank you!

But anyway, yes Thursday for my bone marrow biopsy I will be as high as a kite again under sedation which I have no problem with at all because now that they’re weening me off steroids I’ve become Little Miss Scatterbrain. Actually the best way to describe it is like the squirrel from the animated movie Over the Hedge. I’m a bit everywhere and no where but it’s getting easier with each day. However still craving all the goodies and yes still loving the bacon! As for hospital they have kept me in due to me needing some extra fluids and just keeping a general eye on me and my blood counts because now that the drug is working it is messing around with my normal blood counts a little bit which I’ve been assured is a good thing that they wanted to see at this stage. But as I mentioned in last weeks update - I’m in an awesome room and I have plenty of things to keep me occupied, I’m taking it for what it’s worth. Doing all the things I wouldn’t be able to get away with if I wasn’t here and I feel a little guilty admitting it but I’m loving it! And yes, lots of people have been asking me whether they can come in and visit and even though I am allowed visitors, I really don’t want to see anyone at the moment. When you’re sick and especially when you don’t look like yourself due to all the steroids (I literally look like Theodore from Alvin and the Chipmunks) you just don’t want people seeing you like that, but thank you for all the lovely offers to come in but at the moment I’d rather hide away for a while until I return to normal and then catch up with you all when I’m feeling better and like myself again. I know you guys will understand.

So overall I’ve been good and tracking well. Apart from that it’s just a waiting game. Nothing else to report really so here’s hoping Thursdays results are the ones we want - 0% leukaemia blast count - cancer totally fucked by one cycle of Inotuzumab!! (such an epic name!) ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Day leave this weekend

Lauren's home for day leave today & tomorrow (Sat & Sun). Not as much emphasis on 'bacon' from her as she's being weened off the steroids. Pigs are relieved, no doubt!!

Leukaemic cells have reduced under the new drug. Still too early to make a call on it. All going well at this stage. Nice day for a drive in the country.

Update Day 8, by Lauren

UPDATE DAY 8: GOODMORNING ALL!! For those of you who want to know, today is the day I have the second dose of the special drug! It's called Inotuzumab and what it does is target a specific protein (CD22 protein to be exact) within the leukaemic cell. Obviously more complicated then that but you get my drift. And it's quite anti-climatic, the drug is given intravenously through my PICC (or matrix line as I like to call it) over an hour and voila! So I had one dose last Tuesday, I'll have another dose today and another dose on Day 15. Then Day 22 is when I will go in for a bone marrow biopsy to see if one cycle of this drug has got me into remission (which is technically 3%>leukaemic blasts in my system - I'm hoping 0%). Unfortunately this drug won't cure me though - I still need a transplant. So if one cycle gets me into remission (which I'm twisting and fingers crossing up like a contortionist hoping that's the case) we will wait three weeks and then go into transplant. The reason for the time in between is to give my liver and kidneys a break otherwise I'll end up with worst problems down the track or possibly through transplant itself. If one cycle doesn't get me into full remission Pfizer (the drug company who owns Inotuzumab) has given me a second cycle but the research that has just come out 2 weeks ago about trials in the US shows promising outcomes with just one cycle and my doctor is hoping to keep the second cycle just incase I relapse again during or after transplant, which unfortunately is still a possibility that comes with it all. So here's hoping the one cycle does the trick and if not we have a second to back me up!! As for me and how I'm going - I'm great!

Still on heavy steroids to reduce reactions to the drug but they're slowly on the decrease now that the first dose is done and the second one is about to commence. But I still eat like all the savoury food won't be here tomorrow (Yeeesss especially bacon) and I have a funny resemblance to Moonface from The Magic Faraway Tree or a chipmunk! I can even get 4 double chins now! And because the drug doesn't target all your cells like chemo does my blood counts have been good so I've been feeling well and am growing a nice head of dark hair (I'll lose it again in transplant but at least I have more than my Dad at the moment). And I've been keeping myself busy learning how to crochet beanies with Gram, have 700 something origami cranes (only 300 to go), now have Netflix, getting through my movie list, and got out the inner gamer in me and revisited Pokemon and Sims 3, reading books, trying to win stuff out of puzzle books, online shopping, exercising on the bike and getting people to bring me food...

Can't complain with life at the Royal Adelaide Hotel at the moment. Still not sure about a discharge yet - because I'm the first person in Australia to receive this drug they are loving monitoring me so it might be another week but with an awesome youth cancer room like the one I'm in I'm not complaining. Just gotta sit tight and hopefully everything will fall into place! And also, thank you all for the lovely food and bacon tags and memes and love... Sometimes they make my day and then other times they make me really really hungry haha but it's cool to know you guys can laugh with me on this crazy journey too!! Anyway better go and fuck up some more cancer cells 😜 ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Home leave this weekend

Yesterday and today saw Lauren home during the day and back into hospital after dinner. Calamari tonight. Something different after all the bacon she's been eating. Woolies Arkaba been wiped out of bacon - bloody steroids!!! She's even sending me personal messages with recipes with bacon!!! It's getting manic!! She's been busy making beanies for people and watching DVD's care of a movie buff nurse on night duty. Sounds like Lauren and her share a fondness of good quality movies.

Kate visited her this week and found a good use for the electronic chair - lucky it was when we were about to leave. Next treatment with the drug is this Tues or Wed. Not sure how it's going yet as she's still on high steroid treatment currently.

Treatment to remission (again) started today!

The miraculous drug arrived in Adelaide and was administered at 3:00pm today to Lauren via drip. Now go and attack those rogue cells you life saving drug!!! This drug being non-evasive binds itself to a certain protein found in the rogue (blast) cells and destroys them/envelopes them - basically gets rid of them. Have to find out more about the process these operate in.

(picture: Lauren giving thumbs up to the new drug (in the background) and the bird to cancer!!! #fuckcancer #laurenlives

We need her back in remission first before we can proceed with the stem cell transplant. Cord blood for transplant has been sitting waiting for transplant in Adelaide since ~ June 3. All ready to go!!

Lauren's FB post earlier today:
SOOO I JUST FOUND OUT TODAY'S THE DAY!! This afternoon I will have this awesome drug and it will start fucking with my cancer!! Today is a good day to have a good day!! ‪#‎FUCKCANCER

Update from Lauren tonight (Sun 21/06/2015)

UPDATE: sooo drug looks like it will be here Tuesday or Wednesday now simply because of customs/paperwork/education etc. but I have been assured it's definitely on its way as it now has its own tracking number and is somewhere between the UK and Sydney as we speak. So really it's just been a bit of a waiting game over the past few days.

Was able to get out and enjoy some hospital day leave this past weekend where I went to the beach and enjoyed the sunshine plus ate waaaayy too much food at Kublai Khan (thanks steroids) and just pottered around home and helped gram do some cooking. Technically I am well enough at this point to be discharged except because they want me admitted for when the drug comes they figured it's best to keep me in my room and I'm not complaining either. At the moment I'm in the room specifically given to youth cancer patients and it is seriously like a little mini penthouse hospital suite decked with flat screen telly, a couch, microwave and kettle and some sort of gaming device I got no idea how to use. But basically I do not mind staying in this room and I can see how in the future, somewhere in Australia, there's going to be a youth cancer centre set up somewhere where all the rooms are like this because it seriously makes life in hospital - especially as a 'young adult' - a lot easier!

As for my health, miraculously my leukaemic blasts have come down, which means the steroids are working wonders and holding me in good stead while we wait for the drug. My doctor was very surprised when she told me this so I'll take it while I can. And bloody hell, those steroids have helped turned me into a food crazed chipmunk faced demon haha an experience and feeling I'll never quite be able to explain with words alone - only 3 packets of cheese and bacon shapes plus 2 cheese and tomato toasties and 2 packets of bacon later can explain fully. And whaddyaknow I'm now thinking about food again.

So before I take myself over to the fridge for a late night snack I just want to mention again how incredible the support and love has been and how grateful I am to have such wonderful friends and support networks in my life - if it wasn't for the continuous support I hear and see everyday I would definitely not be in the strong headspace I am in right now - knowing people are with me and beside me and believe in me is a truly wonderful thing and I thank everyone of you for being part of my journey so whole heartedly and openly. I couldn't do it without you guys so again - especially within the last two weeks, thank you for still believing and being there for me - it does mean the world and I'm so grateful!! So thank you! I know we have a long road yet and the first step is this drug but we will get there one tiny step at a time. Going to make it my mission to ‪#‎FUCKCANCER‬. Just got to fuck it from myself first...... now what was in that fridge.....