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.