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....