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.