Six month milestone & all clear!!!

15/8/16 saw Lauren through the 6 month mark since the CAR T-Cell therapy and latest checks show MRD negative!!! A welcome ongoing result.

This month also gave us the opportunity to catch up and thank Andrew Southcott - former MP and Member for Boothby. My facebook post below from 5/8/16:

A chance to finally thank Andrew Southcott in person for his help with Lauren and her treatment over the last 12 months. Last year he was an MP in Federal Government (and a good one at that!!), now he's back into medicine as a practicing Doctor/Medico.
He finally met Lauren for the first time in person today and saw the outcome of his handy work!!! A real gentleman!!! He did much more than make a crane in parliament - can't thank him enough!! (And Marion for your help AGAIN in making sure meeting happened :)

Day +49. Today's Adelaide Advertiser, page 8

Look what appeared in today's Advertiser. One of the journalist's been following this blog since the 'Cranes for Lauren' articles. Just a shame they didn't have a current photo - as this was an old 'steroid' photo - steroids now long gone as has the leukaemia!!! ....

...or click below to see today's article:

http://www.adelaidenow.com.au/messenger/east-hills/lauren-krelshem-wins-cancer-fight-with-car-tcell-therapy/news-story/4b346410046adbc7cc924f274a14e1c0

Day +41. From Adelaide

Our last day in Melbourne was spent in RCH receiving bloods which took all day. Wasn't the way we planned to spend our last day there, but Lauren needed a few blood products. She was planning on having her nails manicured once more before leaving Melbourne at her favourite Salon, Salon Royale located in the Royal Children's Hospital (RCH). Unfortunately that and her hair wash had to be cancelled, but Fiona and the girls came and visited her in the day oncology ward for a pressie Lauren bought for them for their great support in washing her hair a few times, which they didn't charge for.

She'll get to revisit them in April for that manicure!!!
Other than that, we had a last minute catch up with more Melbourne family and someone Kate (Lauren's sister) wanted to meet in 3 year old Joseph!

On leaving we gratefully acknowledge the support of Ronald McDonald House Parkville

where nothing was too much trouble. If it wasn't for this accommodation across the road from the hospital, our stay in Melbourne wouldn't have been so simple. Over the 2 months we met so many inspirational families challenged by various illnesses with a sick child. Unfortunately, one of those families lost their son this week in 15 year old Jordy. Such tragic news, our hearts go out to them. We all know it, but it just shouldn't happen - unfortunately it does. So next time you want to whinge about a scratch on your car or the weather etc, think about a family who lose their child far too early. It's happening too often, be thankful you may not be exposed to it.

On arriving back in Adelaide on Tuesday and to a new house Lauren hadn't even seen because she was in hospital when we moved, a few of her friends did up her room to welcome her home!! Thanks Bermata, Cassie & Amelia. Great job and a nice surprise for her.

.....and thanks to 20,000 cranes and their wishes and the many people behind those cranes - Thank you!!!

Lauren's facebook post on Monday - last night in Melbourne! (Day +35 Mon)

Last Melb update and probably my last (and biggest) update for a good while:

I figured because this is my last night in Melbourne after receiving the Car T Cell treatment and getting the good news that it has worked so well that I should probably do an update.

Let me start by saying the people over here, from the doctors, nurses, physio, anaesthetists, social workers, psychologists, dietitians, surgeons to even the girls at the hospital salon and the staff and volunteers at Ronnie Mac House and the organisation Challenge have just been amazing and have made the last two months just so much more easier for me and my family. Your professionalism, support, care, empathy and friendship have been state of the art.

And to my medical team, whose names I won't put up here just incase, you truly are life savers. I've never experienced a team that works so well and quickly together and who have cared about all of my problems, regardless of whether they were cancer related, communicating with the right people to get those problems fixed asap. Your seriousness, passion, warm smiles, turning medical jumble into English plus your Scottish and French accents 😉 will be missed! I've never felt so confident in a medical team like yours and you did what it took to make me as comfortable as possible and made sure I had every chance possible that this treatment would work and continue to work. Thank you.

I hope when I come up again for follow-up appointments and what not I atleast bump into some of you!!
Even though I'm anxious to leave I'm so excited to be coming home! And even more excited now that I am officially cancer free!!

I still have a weak immune system and I'm still on crutches learning how to walk and gaining those walking muscles I lost so I won't be able to do some things for a while. I also will need regular platelet (the clotting cell in your blood) and haemoglobin (the cell that gives you energy by taking oxygen around your body) transfusions in the coming month or two as my body, especially my bone marrow, (if any of you have forgotten that's the pudgy bit in the middle of your hip bone where all your cells are created) still recovers and works out a way to live harmoniously with my new T cells. So don't get upset if I can't catch up with all of you straight away!! Still got to be really careful so I don't get an infection and jeopardise the treatment.

So for the Royal Adelaide Hospital team,
Watch out - I'm coming back, healthier and stronger than ever!! (Whether that's a good or bad thing I'll let you decide)

But even though I still have a while to go until I'm like all of you healthy people again - I have had the best outcome possible and I am so grateful to whatever it was in this world that put the pieces and timing in place for me to be able to receive this treatment and I have no doubt in my mind that it was because of all of the prayers, positive vibes and I guess the 20,000 cranes that has helped make this happen. I certainly would have gone insane without your support, especially the support of my family. Dad, Mum, Gram, Kate and Nathan - there is noooo way in this world I could have gotten through this so well without you. You guys are really the reason why I'm here, you've had to put up with all the shit that having to care for a cancer patient in and out of hospital brings and I will never be able to put into words how much more easier you've made this Journey and especially this Melb trip for me. I love you.

Oops I'm getting pushed off the stage cause the music started about a minute ago - sorry buuuuuut not sorry.
So, to finish off, with the biggest smile on my face, remembering all the friends you've taken from me, for all the innocent souls you will take in the future and for all the lucky survivors now and to come who will have to live with your horrible memories, thinking about the day where everyone will have the joy to say they have won, I say ‪#‎FUCKCANCER‬!

Day +31 (Thurs) - Negative MRD......Cancer free!!!

The pictures say it all....

Negative MRD - first time we've been in this space since Lauren's relapse in Feb 2015!!! Doctor's and team are all ecstatic....not to mention us and especially Lauren!! It's been a long journey from Feb 2015 to now, but all been worthwhile. From a recommendation for palliative care to this outcome is simply AWESOME!!!!!

Day +30 (Wed) PET Scan

All tests this week. PET Scan today at Peter MacCallum Cancer Centre here in Victoria. If you think the Royal Children's Hospital Melbourne is a good, modern facility - wait until you see the new Peter MacCallum Cancer Centre opening here in June this year. Victoria is doing such a great job investing is so much infrastructure for its citizens. You have to feel short changed living in SA in comparison.

Day +29 (Tues) Bone Marrow biopsy

Bone marrow biopsy today - first since the T-Cell infusion on 15 Feb 2016, which should give a clear indication of how the T-Cell therapy is progressing. The lumps disappearing in the neck have been a good indicator of progress too - only one small one left at this stage.

Other than that, she's had a few blood & platelet transfusions today and last week, but this doesn't seem to be causing the team any concern at this stage of the treatment.

So all quiet except a team of bike riders raising funds for Ronald McDonald House rode into town last week by riding through rural Victoria (500+ Kms). Seeing as we've been staying here (Ronald McDonald House) since January and after speaking to some riders, I've decided to join next year's ride - dumb I know!!! Actually it was meeting the truck driver and how many bikes he can carry if you have to stop any day - that was the clincher for me!!!

Day +20 (Sun). Nothing new to update

Nothing much happening on the medical side for Lauren except for blood checks (1 transfusion, platelets) and physio on her leg a couple of times a week. Bone marrow biopsy next week should give a better picture of how the treatment is working.

So Lauren has been busy having her first manicure (with Kate's first pedicure)

and a gentle massage from www.challenge.org.au - a switched on local charity providing support to cancer patients and their families. For a state based charity they punch above their weight in support services.

Day +16 (Wed). Salon Royale

Yesterday for a reward for her first day out of hospital, Lauren had her hair washed and head massaged by Fiona at Salon Royale - a salon located on the ground floor of Royal Children;'s hospital. Ground floor has a gym, McDonald's, Chinese massage centre and much more. Not your typical old fashioned hospital design of the 1800's!!!

Today she was given a gift voucher for a manicure at the same centre by a friend who couldn't believe Lauren has never had a manicure before. The girls at the centre are amazing and Lauren intends revisiting them for her regular check ups at RCH over the next 6 months!!

Day +15 (Tues). Goodbye Room 224 Kookaburra Ward

Yesterday Lauren was discharged from room 224 on Day +14. A mere two weeks after her T-Cell infusion and ends the hospital stint started in Adelaide (RAH) on 4/1/2016 with the foot infection, before transferring to Royal Children's Melbourne on 18/01/2016. She's still neutropenic so has to avoid crowds and care re hygiene.

Moved into a stand alone unit away from the Ronald McDonald House main complex, for hygiene reasons - own bathroom etc. Except for the most feral woman (she wins the grand final for 'feralness' hands down!!), I've ever heard who decided to use her car park and ours for her small car and then refused to move it when asked.


I thought I knew every swear word up to now. She was able to educate me on new ways to swear!!! She's probably still swearing on the top of her voice 24 hours later. Would be a top candidate for a Sam Newman interview!! Right up his alley. She's not part of Ronald McDonald House, not sure she's even part of this planet, so Ronnie Mac's not at fault. So that's the only exciting thing happening these days. I'll have to tape her, although I think people in Adelaide would hear her from here anyway!! Maybe even Perth!! FFS!!

Day +13 (Sun) - out on day leave this weekend

Both days this weekend Lauren has been out & about again. This time venturing further afield than just the grounds surrounding the hospital. Yesterday, caught up with Melbourne family again and today, spent the day with her Canteen friend back from England - Asha. Later in afternoon Kate & Nathan arrived with their mother for a visit.

As you can see from the photos, she's more active with Kate & Nathan around, which should be good for the leg!!! Looks like discharge might be brought forward to tomorrow - a mere 2 weeks since the T-Cell infusion. Oh yeah, the 6 or 7 nodes (lumps) in her neck which were huge, have basically gone, except for one small one according to her. I couldn't even feel it - a huge change from when they were like the Great Dividing Range on her neck only 2 weeks ago!

Day +11 (Fri) - Preparing for discharge!!

Things are moving along quickly now in preparation for discharge, planned for Tuesday. Feeding tube came out today (she's very happy about this). Various drugs are stopping or being weened off. Last 3 days, Lauren's been allowed out in the grounds of the hospital

- just a week after the procedure!! Unheard of in a bone marrow transplant!! This procedure, whilst classified as high risk because it's still to be proven, is so much less invasive than 'traditional and currently accepted' treatments. Albeit, in Lauren's case, we'd exhausted traditional treatments anyway.

We checked out an isolation unit Ronald McDonald house has for the next few weeks as an outpatient. It has 17 stairs in it, so that will force her to start using her stitched leg again. Hopefully won't be too long before she can walk again unaided. Got crutches today for when we do leave next week. RCH will continue to run regular checks, so we'll be here for a few weeks yet.

Day +10 (Thurs)

No fevers now for 48 hours. So looks like we're potentially through Cytokine Release Syndrome (CRS) stage. Doctors' talking about a possible discharge next week as she comes off antibiotics etc and we'll remain in Melbourne for follow up appointments with the local team and a bone marrow biopsy soon after day +28. Then we'll have a better idea how the treatment is working. At this stage everything looks normal and Lauren's french vocabulary is increasing.

Yesterday, she got a chance to be pushed around the hospital grounds in her wheelchair and will be doing the same again today.

So much easier than the bone marrow transplant of 2008!! I can see, if this treatment works (proven over a much longer period of time) how it could potentially replace bone marrow transplants, once proven, in time. Not to mention chemo as a treatment (barbaric treatment at that)......in the year 2080 they'll be teaching in medical school training "in 2016 they were poisoning patients with this thing called chemo to make them better!!" Smacks of the old barber shop carrying out surgery in the old days for us!! Thank goodness for research. Be nice to see Australian governments back Aussie research/researchers and lead in this important growth area. Seems we need someone with vision again like Victoria once had with Jeff Kennett.

Day +8 (Tuesday)

More of the same. Fever or two. Bit of pain where the nodes are (lumps in neck). Feeling a bit sick (sometimes). Not much else to report at this stage. All of this is expected.

Except Lauren just started learning French on her I-Phone because she's so impressed with her Doctor's French accent!!! Au revoir!!

Day +6 (Sunday) 1 year since relapse (3rd bout of ALL Leukaemia)

More of the same today. Fevers. Temps getting a bit higher now.

One year ago today (21 Feb 2015) took Lauren to the Arkaba Medical Centre for a bleeding nose. She thought she'd been overdoing it a bit at College with her acting classes/performances. Turned out to be a huge surprise for both of us. They sent for bloods straight away and that night started this journey over the next year!! No need to repeat it - that journey's in this blog already. Where we are today wasn't even envisaged as a treatment option a year ago!! We were going to Germany for treatment, then Pfizer supplied the drug Inotuzumab under compassionate grounds because Amgen wouldn't release theirs at the time (even to be purchased), that (Pfizer drug) allowed us to stay in Adelaide. Then we were supposedly on a waiting list for a clinical trial in Washington DC and miraculously the trial at RCH Melbourne opened up in October 2015 and Lauren fitted the trial criteria perfectly, so here we are, fevers and all. Seems to be going to plan. One day at a time.

Day +5 (Saturday)

More fevers last night & again tonight. Seems to be happening at night for Lauren. She had a nice reprieve through the day, sitting up watching some movies and doing mindfulness colouring in. A good thing is one of the smaller nodes on her neck has disappeared last night. Nothing definitive can be read into this, but rather see them go than grow!!

Tomorrow Nathan & Kate were coming over from Adelaide with their mother, but that's been squashed as Nathan has run up a temp himself (must be in sympathy for Lauren!!) and vomiting (same thing Kate had the week before). So they can't go near Lauren until all clear.

Day +4 (Friday)

Seems ironic. A few weeks ago, we were dreading fevers associated with the infection in Lauren's leg. Today we welcome fevers when they come!!

Last night she had some 4 fevers and another one or two today, so something's happening. Fast asleep now as she seems to be tired a bit lately....I wonder why?!

Interesting talking to one of the staff at Ronald McDonald House today and how they house many people from the country and interstate who wouldn't be able to support their kids through treatment(s) if it wasn't for the affordable housing provided by RMcD House. It drove this fact home for me as last time (2008) when we went to Sydney for Lauren's Bone Marrow transplant, I had a great employer (Aviva) with a very empathetic CEO who kept me on the payroll whilst away. It gave us the opportunity to rent an apartment near the hospital and live as normal a life as possible for the 3 or so months we were in Sydney, and PATS kicked in too (see below).

This time, with the employment situation totally different, I couldn't afford to stay here and be with Lauren if it wasn't for Ronald McDonald House accommodation. There is a subsidy from the SA State Government (PATS) when you're more than 100Kms from home for treatment, but they don't pay it for participation in a 'clinical trial'. I will be challenging this requirement, as a 'trial' as a choice over traditional treatment(s) readily available, I can understand, but we have no other options except this CAR T-Cell therapy and it is only available in Melbourne. So we have no choice (unless death is considered a choice by the SA Government) but to leave Adelaide for treatment. Ironically, if we were here for a bone marrow transplant it would be payable!! Go figure!! Rather than have a shot at bureaucracy, I'll assume they haven't considered that not all 'clinical trials' are simply choices over traditional treatment(s), - sometimes they are someone's ONLY option.

Day +3 (Thursday)

Still not much happening. Just a fever last night and a low grade temperature yesterday, which indicates something's happening. Someone asked Lauren the other day "what she wanted?" She answered "A fever!!" A fever is an indication something is challenging the immune system. Cytokine Release Syndrome (CRS) is something they expect to see occur at some stage.

So just more watching the grass grow when crossing the parklands to the hospital at this stage.

....and thanks to whoever sent the Haigh's Chocolate frogs. They've been popular, even when she doesn't feel like eating much!!

Day +1 (Tuesday)

Nothing exciting to report today. About the only thing exciting was watching the grass grow crossing the parklands to the hospital (RCH). Don't expect much for a couple of days.

PS. Change that. 9:26pm, hadn't left her room for even 2 minutes and Lauren text me to say she spiked a temperature. We'll see how it goes through the night, but this is actually a welcomed sign, if its what they're anticipating. Day +2 will no doubt have more detail.

T-Cell infusion. Day 0 (15/02/2016)

Lauren had her long awaited T-Cells infused today. The first in Australia. Took a whole 5 minutes & a whole 50 mls!! 13:07 EST start; 13:12 finish.
Special thanks to the wider team here at Royal Children's Hospital (RCH) Melbourne. Took a while to pierce the bag carrying the cells, but other than that, procedure was a real anticlimax (expected that after the bone marrow transplant in 2008). Now we wait......

Ironic, we're just 6 days shy from Lauren's official second relapse a year ago (21/02/2015). Been a long year and the most challenging to date. The fights fought along the way, the support from Andrew Southcott MP and Senator Nick Xenophon when it was crucially needed, the 'Cranes for Lauren' group Jen F started on facebook (sorry is still 'secret' on facebook and can't be made public now due the group's size) and the subsequent 20,000 cranes from all over the world including local sporting and theatrical famous personalities. I used to love roller coaster rides, but am happy to not have to go through the last 12 months ever again. Thank you to too many people to mention whose path(s) we crossed at different times and will continue to cross.

Special thanks to Grandma (Lauren's) who at 80+, is still a rock when it comes to Lauren's treatments and support. Mum's hardly lived in Sydney (her home) these last 12 months.

Now for those good wishes and efforts to do their stuff.....we wait....

Another weekend out and about

Lauren's last weekend before the infusion tomorrow and she spent it out for a major part of each day enjoying dumplings, fish & chips and seeing family. She's also threaded her original 1,000 cranes which she made prior to the 20,000 from the rest of the world!! The time out of the hospital has been a psychological booster before the procedure tomorrow which starts a new era. She's ready for it.....blanket from friends and all!...

With a visit from and old Collegian, Kate Gilbert tonight to finish off the weekend who also works at Royal Children's Hospital and been talking up Melbourne to Lauren (I'll bet she comes back!!)

In case you're wondering after photo of leg in previous post, she's getting around with either a walker or wheelchair for her outings as she's not ready to walk unaided yet. So next step is infusion tomorrow.....if you're ever going to hold a positive image of a positive outcome for Lauren, now's the time! Thanks in advance

Good day for a walk around the grounds at RCH

So, results from bone marrow biopsy yesterday are surprisingly still low (blast counts) - still under 0.03%, which is great!
Also, for those wondering about her infected leg which put her into hospital in Adelaide (RAH) back on 2/1/2016, see the picture of her war wound. Still after confirmation how many stitches. It's times like these you'd probably prefer short legs!! (less stitches!!).

Also, they let her out around the grounds for a couple of hours which was bliss for her. Not a cloud in the sky and we camped out under the shade of some trees overlooking the huge kids park at the hospital.

Tonight Lauren had her last dose of chemo, which should be the end of chemo for her infinitum. Next her modified T-Cells go back into her, planned for Monday.

Day of tests

Today saw Lauren have a bone marrow biopsy and lumbar puncture prior to the infusion next week. It will be interesting to see the results of the biopsy given it's been so long since her last treatment with Inotuzumab. Basically she's been sleeping all day after her general anaesthetic for these.

A surprise for me last night was giving her a back massage to ease the pain from the chemo, she pointed out the 'nodes' in her neck. Felt like the great dividing range with 6 or 7 of them now present there. I was surprised how big they are as I haven't felt them since first appearing before way before christmas. Bigger and more of them now.

She's just gone in for an MRI. A day of tests in preparation of the infusion next week.

More stories from families met at RMcD House. Amazing the adversity some of these people have dealt with and still have to deal with, not to mention the kids themselves!!

Modified T-Cells have arrived!

Lauren's modified T-Cells arrived at RCH Melbourne yesterday, so chemo, in preparation for the infusion next week started last night. Other than a bit of pain and tiredness from the chemo, everything going well. Lauren is able to put more weight on her leg, which is improving each day.

The team(s) here at RCH Melbourne are exceptional. That's a consistent message from all the families staying at Ronald McDonald House. Hearing different families journeys (not just for cancer) at RMcD House makes you take note of how lucky we are. Many stories are extraordinary and their kids are an inspiration, without doubt. I had no idea there are so many diseases out there people are susceptible to. Don't ever let me hear someone whinge about the weather, or temperature or something superficial like a broken nail or scratch on the car. The ironic thing is these people are so positive, with great expectations for their kids, as you'd expect. If you've never had to deal with something serious for your kid(s), be grateful, because the alternative is a tough road.

Tonight a local High School is cooking dinner at RMcD House for the families, so have to run. A credit to their school no doubt!!

PS. The school was Melbourne Grammar. The boys cooked an excellent spaghetti meal!!

Modified T-Cells still on their way here

Despite last week's post, Lauren's modified T-cells from the USA haven't in fact arrived at RCH Melbourne yet. Hopefully will arrive tomorrow, with chemo starting soon in preparation for infusion. Other than that, a pretty uneventful day after her busy weekend. 5 steps on her foot was a highlight and it's now been over a week since she's had a fever, so looks like the infection has been successfully tackled.

She's asked for her mindfulness colouring book, so that's a good sign!

A weekend of outings

This weekend has seen Lauren being able to leave the hospital bed for the first time since 2/1/2016. Yesterday she enjoyed a barbecue lunch at our Cousin's Evadne and Derry. The joy of having such a large family, we cover VIC too!! She enjoyed herself so much, didn't want to come back. As it was the hospital rang to check if we were indeed coming back or had gone AWOL.

Today another outing started with a drive to St Kilda, followed by a visit to family who were down from Sydney and finished off with Pizza at Ronald McDonald House with Grandma and myself before returning to hospital (only a little late this time).

As for me, continuing with a regular ride on the great Vic bike tracks. Enjoyed a coffee at Williamstown this morning.

All in all, been a good weekend and she'll sleep well again tonight.

Standing for first time since 2/1/2016

Lauren stood up and put weight on her leg last night for the first time since 2/1/2016!! Her FB post from last night follows:

That feeling of accomplishment you get that all you can do is cry tears of joy.... After 6 weeks being bed ridden I can finally slowly start to learn how to move around..... Just another hiccup that I've conquered - another step closer to Carr-T Cell treatment - another step closer to being cured. ‪#‎FUCKINFECTIONS‬ ‪#‎FUCKCANCER‬ ‪#‎FUCKLEUKAEMIA‬

Today she's up on it again and out of her bed for a while. Muscle tone has disappeared being so long in bed, but can now start working on that again. Nice to be out of her bed for a while!

In theatre again today.....

........not the kind of theatre she'd like to be in, being a budding actor!! Today saw Lauren under GA in theatre to clean the wound in her leg again. The drains have come out and it's now stitched up. The team are happy with her progress in getting over this infection.

She had her first shower today (albeit sitting in a wheelchair with her leg covered in plastic). After a month, this was needed!!!!

Good news her bone marrow biopsy done only recently has her blast count (leukaemic cells) down further to 0.02% (thanks to Pfizer's Inotuzumab). This gives breathing space for the leg to heal before proceeding with the CAR T-Cell infusion. On that note her modified and reproduced T-Cells arrived at the RCH Melbourne this morning from the USA and have been frozen pending the infusion. Has been confirmed, Lauren will be the first person in Australia to go through this procedure. Another first!!

She's very comfortable here at the RCH and the team looking after her. It all seems so coordinated between all the different departments here - better than I've seen in any hospital to date. Someone has had a huge vision with medical health in Victoria.

I'm housed at Ronald McDonald House for the next 5 - 7 weeks, which is perfect given it's right across the road from the hospital, so allows me to come & go easily through the day and night. My bed buddy is tragic, but allows me some regular exercise whilst here, given I can't do Mt Lofty for a while!! (see picture - explains it all)

Today made the mistake of "following the traffic" which took me right through the centre of the city and out the other side. Having said that great bike lanes here in Melbourne....and RCH was a good landmark to find my way home!!

I need a Ronald McDonald House guernsey here!!!....or an RCH one if they have one.

Lauren's FB post today

BIG MELBS UPDATE: So this past fortnight has been pretty hard. I finally got up to Melbs and to the Royal Children's Hospital Melbourne who took over my care and the infections I have (for a number of different reasons which I will sort out once I'm better).

A number of scans, tests and theatre admissions have happened since which resulted in painful situations and loads of medications and there was a time where after the day has ended all I wanted to do was sleep. But then my phone would be buzzing through all these messages of support and questions about melbourne or even ringing which just irritated me. But I need my phone to contact Mum or Dad or for them to contact me so switching my phone off wasn't a choice - hence my last little update which I wonder if some of you even read considering you commented on my post anyhow😬.

But things seem to be slowly going upwards since I've been under Melbourne's care. My leg and the infection is definitely on the mend after having surgery to drain what they thought from scan images was a very very thin abscess running down my calf. Turned out it was a bit more than that and everyone's super glad they have drained it and continue to drain it out.
So yes still bedridden but physio have been helping me get some conditioning back so that when this infection is gone and we're ready to move ahead with the Carr-T Cell treatment I'm as conditioned as I possibly can be because there might be a time where I feel shitty for a while.

I really do love this hospital. The team looking after me are very friendly, organised and professional. And I find this hospital and it's different departments all have this amazing way of cooperating and communicating with each other to treat their patients. So let's just say I'm glad I'm here!!!!

And it's been good having my Mum, sister and brother up here - they always seem to make me laugh with the stories they have to tell when they come in. They will go home either Monday or Tuesday as my Dad and Gram are driving up to Melbourne today.
So yeah there's my update but I'm still not 100% and often sleep my days away as my body is trying to heal itself so don't go crazy but if you do have something to tell me perhaps tell my Mum or Dad because often during talking with them I just close my eyes and listen to their stories. And saying that I'm off for a bit of a nanna nap now.
‪#‎FUCKCANCER‬ ‪#‎FUCKLEUKAEMIA‬

Update from RCH Melbourne

Sorry about the lack of news. With the house move this last week, I haven't had internet access sorted until today. Just in time before leaving for Melbourne tomorrow.

This last 2 weeks has seen Lauren in for a number of procedures. From a bone marrow biopsy (twice), lumbar puncture, to a new Hickman line inserted (for accessing veins) for taking bloods and infusion of her modified T-Cells (CAR T-Cell therapy). This has been postponed until the infection in her foot is totally corrected. Last weekend, this infection led to a 20 cm incision in her foot to extract the puss (which sounds like there was plenty there!). The idea was to extract it via a needle biopsy, but very quickly the team realised that won't do the job. So the cut has been left open until recently so they could keep draining/cleaning the puss/infection from her foot. Apparently it's looking a lot better. Last Lauren mentioned is it was not stitched but in a cask so they can access it again if needed. Might need to correct some of this detail once I've spoken to her face to face.

On that note Julie, Kate & Nathan are returning to Adelaide this week and Grandma & I are heading to Melbourne tomorrow. The infusion of her T-Cells has been delayed about 1 - 2 weeks at this stage, pending the foot being clear. She's still been spiking a daily temperature, thus why they want it cleared up before proceeding with the T-Cell infusion. The good news is the first bone marrow biopsy (about a week old) had only 0.2% (or 0.02%?? not 100% sure) blast count (leukaemic cells). She's had a number of transfusions over the last 2 weeks but seems to be on the mend so we cam proceed soon.

Will update you more from Melbourne. I'm sure Lauren only brought this on to avoid helping with the house move. Still tossing up on whether to put her bed together tonight, or leave it for her to do when back........I know, it'll be assembled tonight!! She hasn't even seen her new room yet, but am sure she'll like the new house and very close to a close friend of hers (BD!!)

We'll be taking a special gift from Chrissie P to Lauren tomorrow - an Actor's Industry Survival kit.......for when she's back and continues with her fulfilling career!

Lauren's facebook (FB) post from RCH Melbourne today.....

First Melb Status -

so got admitted to the RAH about a week and a half ago as my foot swelled up as a balloon and there was no way I could put weight on it. It turned out I have a skin infection called cellulitis and a blood infection called the golden staff (thankgod the blood one responded to antibiotics quickly and has gone)

But,Finally can see the plan that's ahead of me. Got ready with some amazing C6 nurses, Had an awesome transport service in an ambulance with two paramedic hotties who took me to the ‪#‎royalflyingdoctorservice‬ hanger where I had this awesome nurse and captain look after me and my infectious feet. Never laid down in a plane flat before - tick! Then these two awesome flying doctor nurses took me into their flying doc transport van (much like an ambulance) who took me straight to the hospital and into my room. Feeling so much calmer being here - they already have this plan in place and I haven't even been a day. And I'm allowed things like numbing creams and them putting in and taking out certain bits and pieces like jelcos and nose feeding tubes whilst I'm under General Anaesthetic(GA)!!! Gotta admit I'm exhausted as the day before yesterday I was really high on some drug which in the end made me totally constipated yesterday that yup I had to get a enema snd yep I am now wearing nappies for undies as I can't control my bladder- BUT it looks like it's settling down so hopefully no sitting in my own shit soon.

Anyway been a big day will update you more as I know more. In the meantime be grateful you don't sit in your own shit unless you're a baby. And LOOK I got this for dinner instead of potato mash and dried out turkey with white cream sauce and the famous RAH frozen broccoli!!!!

Off to Melbourne this morning with Royal Flying Doctor Service

Hectic morning at the hospital this morning with nurses trying to get Lauren ready for her transfer to RCH Melbourne under rushed conditions with the ambulance was ready to take her right on time. Upshot is, she's on her way right now with Damien, Chief Pilot and nurse Chloe (I think that's correct) in an RFDS flight to Essendon Airport.

This week has seen some unusual things happening, like Lauren hallucinating from the concoction of drugs she's been on for the foot infection & cellulitis. That's still not totally fixed yet, but looking much better today. The yellow eyes are a concern, however VOD has been ruled out. The side effects from the drugs is disconcerting. So off to Melbourne (RCH) for treatment of infections and once sorted, prepare for the CAR-T Cell infusion. So RCH Melbourne is best place for her right now.

Special thanks to all the nurses, cleaning staff and Doctor's who have worked to get Lauren ready for this flight over the last couple of weeks. Also thanks Damien for the tour of the aircraft - brought back memories!!

She hasn't seen her new room in the new house yet as she never came out of hospital this visit. I'm sure she just stayed in the RAH longer so she didn't have to help with the move. Anyway her cranes (20,000 #cranesforlauren) are waiting for her when she gets back. We only had to dump 5 pieces of furniture to house the cranes!! - thanks Jen F!!

Still in RAH fighting infection

Lauren's foot is improving a lot of late. At last I can actually see the improvement. Her biliary reading has been high and yellow eyes recently has meant a few tests & scans. Especially as one possible side effect of Inotuzumab is VOD. Basically a liver disease. Anyway, tonight the Doc confirmed after the scan it's not that!!! Soooo relieved. Possibly just a reaction to antibiotics she's been on. One of which they've changed which should manage this (biliary reading) better.
We're now so close to going to Melbourne to complete the trial, we don't need any more hurdles. She's also regularly spiking fevers daily, so still in the RAH. Also on a massive concoction of drugs which are impacting her. Coming off steroids hasn't helped, although glad to see her off them.

Lauren is flying across (to Melbourne) on Monday via RFDS and being admitted straight into RCH Melbourne. With her fevers, they don't want her driving across with her mother & siblings on Sunday. Melbourne can't come soon enough. RCH will treat the infection and run tests to prepare for the trial. The infection has to be cleared up first.

Lauren hasn't seen it yet, but when she's back it'll be into a new house. 20,000 cranes made the journey there yesterday. They needed their own truck, they take up so much room!! (Thanks Jen F et al!!! Can't just throw them away when they're doing such a good job in looking after Lauren's (& others' wishes). So 20,000 are in her new room for when she returns, late Feb/early March.

Will confirm Monday how things go with the travel.

Lauren FB post yesterday...

I'M BACK IN THE RAH UPDATE: so I'm back in the RAH because I have got an infection in my skin and foot - cellulitis and golden staff infection in the blood. So I'm on high dose antibiotics and my mighty PICC/matrix line which has been in for 6months which is amazing for a PICC line (the line they put all the IV drugs through) had to come out to make sure it wasn't that causing the infection as well. So hopefully once this infection is sorted I'll have a new one put in all ready for Melbourne! AND my doctor said I get to be sedated for this picc line insertion!!! So again I'm looking forward to being high as a kite and not remembering traumatic experiences!

At the moment it's gelcos (those little plastic ones they usually put in you when you go into emergency) and blood pricks and tests but the blood and Gelco nurses are amazing here and have been able to do an amazing job with my small veins.

My foot hurts a lot and I'm unable to put any pressure on it.

I'm chewing through platelets (the clotting cells of your blood) like there's no tomorrow and at the moment I'm neutropenic which means I have a small immune system so if you're sick please stay away from me. Also some good news - my last dose of Inotuzumab did its job and got my blast counts down enough for the trial in Melbourne. Will know the full results hopefully next week.

So yes, hopefully the antibiotics will do their thing in time for the 18th of January, which is when Melbourne now wants me up but again that could be delayed if this infection hasn't cleaned itself up in time. The docs have a few more tricks up their sleeve if they get desperate but their pretty sure the antibiotics and resting and elevating the leg will do the job. In the meantime I'm reading fault in our stars, watching some movies I've been meaning to see in a while, adult colouring in and trying to win something from a puzzle book and learning Spanish, So I'm keeping myself occupied smile emoticon
Here's hoping everything clears up in time!

Infected foot

An infected foot has put Lauren back in hospital. Not sure how, however her neutrophils have taken a nose dive and her platelets have been low, necessitating numerous transfusions. Neutrophils are now back in normal range and infection is retreating. Did mean her PICC line, in for well over 6 months, had to come out and a new one will be inserted for Melbourne (RCH)

On a pleasing note, Inotuzumab (Pfizer's wonder drug) has again done what it's supposed to and brought Lauren's blast count right down to minimal levels which should see us through to her treatment in Melbourne later this month (21 Jan onwards).

Not sure what's happening about her planned Melb trip next Monday for tests. There is talk of doing them at the RAH as nothing intrusive or can't be done here.