Update #26. Feminine touch to blog!!!!!!

Michael has been “hogging” updates on this blog and I thought a feminine touch is required. Also it seems most jokes are at my expense.!!!!! Can't believe today has finally come, it has been a long time coming and the emotion of today has been unbelievable, so exciting but so scary. Lauren and I have had some tears but the nurses and Drs have been great.

Miss everyone back home and think of you all the time, so great to get all your encouraging texts and emails and I know this sounds strange but have had a real sense of all your prayers, thoughts and love I know you have been sending our way.

Can't believe how quickly we have settled into our new apartment and I love going back there when I swap with Michael to stay at the hospital, although it’s very small it is bright and sunny, has great storage so we have been able to unpack all the bags (not live out of suitcases) and it has a great aura. Has a lovely sunny balcony, not that I have had much time to sit on it but the thought has been there.

The school where Kate and Nathan are going is really lovely. Everyone has been so welcoming and caring (just like St Johns) so they have made some friends and generally enjoying school.

Met this lovely lady from the local Lutheran Parish yesterday - Emily, who had the kids and I over for arvo tea. She reminds me of you Glenice, so hospitable and happy to help with anything, she just lives up the road from the apartment and has offered to help with babysitting, picking kids up from school, things we need for apartment and best of all down the track has offered to take me to these amazing (so I have heard) shops which sound like a huge Westfield but shops like Burnside Village. She is one of the many people who have been so welcoming and helpful to us on this journey. In some sort of weird way the experiences of this have been a blessing to me but then again I am not the one lying in bed on a morphine drip, but we are here so I am trying to focus on all the positives. Like this morning, Lucy (who was the courier on the plane with the cells) said many people on the flight asked about the box she was carrying - and she mentioned that it was for transplant to a 13 year old - all these people from the flight sent their best wishes to Lauren and hoped today went well for her. When she went through customs and that can be tricky as it can not be x-rayed and customs need to thoroughly manually check it - the customs guy had just put himself on the bone marrow donor registry not so long ago as his family had been affected by Leukaemia - so he made sure she went straight through. This is one of many stories of amazing caring people - maybe there is a book in all of this !!!!!!
Anyway that’s enough from me

Love u all Julie

P.S. I am not addicted to the Alcohol wipes I think it is the smell of Alcohol, so please save all your good Reds for when we get home – we will be happy to share them. !!

Update #25. Day Zero. Transplant DONE!!!!!

Transplant has been completed (Day Zero) around 2:40pm - 3:05pm EST. Hard to explain the feeling, but all done and Lauren sat through it talking to the team carrying out the procedure. She's surprisingly well right now, but we've been warned she won't remain like this and is now neutropenic (zero resistance to infection). She's still on morphine to manage the pain associated with Mucositis (see Update #22). The good news is no more Chemo!!!!! Yeah!!!!

Now we sit and wait for her new stem cells to engraft and reproduce like 'rabbits' as Kathryn said through a text message to Lauren. The next 10 - 28 days are key and her blood counts will be closely monitored to see what is happening with the formation on new cells. Graft V's Host conflict is a neccessity but hopefully won't be as bad as some stories we've heard.

By the way, anyone who saw "Saving Kids" on Channel 10 a couple of months ago, where a young boy was having a bone marrow transplant - the room they filmed the boy in is the one Lauren has now - a bit of trivia. We're also next door to another Adelaide family, Louisa, who may be going home soon, after a successful transplant.



HB 74
WBC 0.05
PLT 35
Neutrophils (N) 0.0

Update #24. Donor Marrow on its way to Sydney

The second 'harvest' of marrow from our 22 year old UK donor friend was successful on Tuesday morning (UK time) in providing sufficient cells for the transplant and Lucy is on a plane right now with the marrow. She arrives tommorrow morning (Thursday 31st July) into Sydney. They'll then screen out T cells from the donor's marrow through the day and whatever else they do and the transplant should go ahead tomorrow evening - Day Zero. Fingers et al all crossed!!!!

If you're between 18 & 40 and want to investigate how you might be able to help save a life, like our 22 year old UK Donor is doing for Lauren, look into it at www.abmdr.org.au ............hopefully it will never happen, but one day it could impact someone in your family, or future family and the more people on the registry, the greater the chance of a suitable match for you/your family member. To the younger people out there, please consider it. Fact - the current younger Aussie kids are the biggest group of people signing up for much needed blood donations demonstrating a higher level of social conscience - to their credit!!

Update #23. Transplant planned for Thursday night

They weren't able to obtain sufficient cells from the donor yesterday, so will be repeating the process Tuesday morning (UK time). All going well, the cells will be on a plane with Lucy Tuesday night (UK time), arrive in Sydney Thursday morning, have some work carried out by the medical teams that day, and transplanted into Lauren Thursday night. Fingers crossed all goes well.

Update #22. Preparing for transplant

Lauren finished her radiotherapy on Friday - thankfully that's over. She's had a serum made from horse blood which is currently killing off her Lymphocytes (T-cells), to minimise the chance of her T-cells killing off the donor stem cells when transplanted. She spiked a fever most likely from this, but has since bounced back. She has more or less stopped eating and is fed through a nasal tube which will take her through transplant. Tomorrow (Monday) she starts on the heavy duty chemo in preparation for the transplant which is planned for Wednesday night or Thursday night depending on how many 'harvests' are required from the donor to provide sufficient stem cells from her marrow. The transplant coordinator, Lucy actually flew out of here on Friday to collect the donor marrow and bring it back to Sydney personally. The first harvest is planned for Monday morning UK time.

We now have to keep her room as clean as possible to minimise infection. Julie & I have stopped wearing watches and rings so our hands have less chance where bacteria can congregate and we wash our hands numerous times through the day. We also clean the room floor a couple of times a day (standard practice in a transplant room - minimises the number of people walking through with cleaners etc). Julie wants alcohol wipes for home - she's taken a layer off the floor already (anyone who knows how she cleans windows knows what I'm talking about!!), .....and happy for this to continue if it minimises the chances of infections for Lauren. Lauren is spending most of the time in bed, a bit of time on her computer (thanks to Bruce and the team at St Johns Primary School, Highgate) and either sleeps or watches a bit of TV. Mucositis (ulcers) - is starting in her mouth and throat and she will go on morphine tomorrow for pain management.

"Mucositis affects the rapidly dividing mucosal cells lining the mouth, throat, stomach, and intestines. These cells normally have a short life span. The therapy can destroy the cells quickly and they are not replaced right away. There may be raw sores (ulcers) in the mouth and throat. One may have a feeling a little like getting a sunburn in the throat. It is painful, can interfere with eating, and may require pain medication for a week or two until the tissues recover.

Mucositis due to chemotherapy typically begins 3 to 5 days after the start of therapy, peaks at 7 to 10 days, and slowly subsides over the next week. Mucositis due to radiation usually appears toward the end of the second week of treatment, plateaus during the fourth week of radiation, and may persist for 2 to 3 weeks after treatment is over."

Last night Kate & Nathan went to the Crows V's Swans match at the SCG, compliments of Simon Goodwin and the Adelaide Football Club. Nathan is now a born again Crows supporter so I'm taking his Swans scarf back. Crows won 77 to Swans 53. I left my Swans scarf in the car and with a window left open in the car park, guess what happened? ........................................... I now have 3 Swans scarves!!!!! We were accompanied by Fred Veerhuis, author of Kate's favourite book, "Shit Happens" and known to many people from the St Johns and Concordia community.

Update #21. Started treatment in Sydney

Lauren was admitted into Sydney Children's Hospital yesterday (Tuesday) and spent half the night decorating her room, given she'll be living in this enclosure for some 2 months, non stop. You can see her 'wall' with all the pictures here. Fairy lights have been a first, we understand for a transplant room.













Lauren started radiotherapy this morning and has two bouts each day for 3 days, morning and afternoon at the Prince of Wales Hospital. She's packed like a box so the rays go straight and don't bend with the contours of her body. It's Scary just how many people are in these hospitals for cancer treatment(s)!!!!



The bone marrow extraction from our UK donor is planned 28th/29th July and Lauren's bone marrow transplant planned for 30th/31st (next Wednesday/Thursday) depending on how it goes with the extraction. May need two goes at it to obtain sufficient cells.

Kate & Nathan started school at their new school yesterday. Nathan sounds like he's enjoyed it, Kate's a little less eager about it at this stage.

Our postal address here is: PO Box 572, RANDWICK NSW 2031

Nothing is going into Lauren's room so please don't send flowers et al. You can email her - let us know if you don't have her email address.

Update #20. We're all safely in Sydney

Julie and the kids arrived safely last Thursday and started medical appointments. For those who are aware of Julie's infected ear, the Doc couldn't put a grommet in on Tuesday but pierced her ear drum to minimise pressure build up. Turns out she didn't have a problem on Thursday's flight and no burst ear drum (luckily). Now she officially has a hole in her head!!!

Michael arrived today via car. Was a good trip without kids in the car!! Thought I'd test the new GPS purchased to find our way around Sydney. Only issue was for the first 30 minutes out of Adelaide, it kept nagging because I wasn't using the directions it was suggesting. Thought I'd bought a real dud!!! Anyway, found the solution - switched it from the female voice to the male voice and it worked famously from then on. Only issue then, it pointed out the pubs in each town rather than petrol stations, so trip took a day longer than it should have!!!! (...joking folks).

Not sure what's happening re: treatment yet, other than Lauren starts Radiotherapy on Wednesday. Testing and appointments until then. Been good to catch up with family. Kate & Nathan have been staying at Grandma's since arriving.

Last week Lauren got to meet Simon Goodwin (Crows Captain) with the TripleM breakfast team, Kym, Ali & Dzelde and all three kids were given a Crows gurnsey (which Nathan hasn't taken off in over a week), So much for supporting the Swans!! Lauren was interviewed by the team and we had sufficient calls & text messages to know half of Adelaide heard it. She was also on Today Tonight last Thursday for a mystery flight she did with 'Canteen' and the Crows, where she ended up going to the Crows/Collingwood game. Again enough people must have seen her speak on TV going by all the phone calls, text messages and emails.

Update #19. We have a date for Sydney

We've been given a date to have Lauren in Sydney on 17th July, next Thursday. We're a bit smarter about it this time, so Julie & Kids are going up Thursday and Michael will probably go Friday.....just in case it's all called off again at the last minute. We know what happened last time, so we know nothing is certain with any of this. The Donor, a 22 year old UK girl from the international bone marrow registry donates her marrow in the UK on 28th/29th July at this stage. Lauren will therefore start numerous tests this week before going to Sydney.

Tomorrow Lauren meets Simon Goodwin (Crows Captain) at Triple M with the breakfast team after they found out she only went to her first Crows game this year. From there she's in hospital for 2 days for the tests. Should be home Friday for her last weekend in Adelaide (for now).

For those still interested in details of the Australian bone marrow donor registry visit: www.abmdr.org.au
We would still like to meet our UK friend when able to and find out what makes a 22 year old go to the trouble of getting on the registry for no personal benefit except what she may do for someone else, unknown to her!!! We're certainly glad she has gone to the trouble of being on the registry.