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.