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