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.