Update #56. Day +101 Lauren can socialise without the mask at last!!

Yesterday saw Lauren pass the magic day +100 since transplant, which means she can now go out in public and mix with people without the nasal/mouth mask anymore. She celebrated by spending last night with Kate (sister) and Bettina (Lauren's Camp Quality companion) at the Celebrity Tennis Challenge and met celebraties: Tom Williams from Australian Idol, Darren from the band Powderfinger and Brian McFadden, Delta Goodrum's fiancé.

She continues to do well. Still needs the wig at this stage, but her new hair has started growing again, so next update will be Lauren with her own hair fully grown!!! (be a while yet). She is picking her subjects for year 9 at Concordia this week and will be able to visit her friends at school now and lead some form of normal life.

Just a reminder if thinking of visiting Lauren, please postpone a visit if you're sick/cough/cold at all or been exposed to anyone with chicken pox or other infections as her susceptibility to catch infections is still higher than for a healthy person.

Update #55. Day +81 (from Adelaide)

Hi All,

Yes we're home safe & sound as most of you know already. Lauren continues her treatment/checks in Adelaide now. It must be the Adelaide water, as she needs fluid each visit here as her creatinine levels remain at the high end, although still within range. Lauren finally got to spend time with her favourite pet, Jemma - the famous dog on 'the wall' in her transplant room in Sydney. Aside from an occasional case of sicking up, she continues to do well. So much so, since leaving the transplant room in Sydney on Day 30 something, she hasn't needed to overnight in any hospital in Sydney or Adelaide since, ......touch wood!!!!!

The good news is the information paper about Sydney transplants I promised a few people, before heading to Sydney is nearly finished. The purpose of this is so future families travelling from Adelaide to Sydney for Bone Marrow Transplants at least have some better and basic information around logistics of accommodation, shopping, general tips/choices/options whilst there, so they don't replicate the hours going over the same ground hundreds of families have researched before them.

This will contain a list of families who are willing to be contacted by future transplant families to discuss their thoughts and experiences. Whilst names and address won't be on the website(s), the charities will be the gate keeper for these names/contact numbers. So anyone who has been down the bone marrow transplant path (in Adelaide or Sydney) and are willing to be contacted by future 'transplant' familes, can you please let me know. My contact details are below. A couple of charities have shown interest in putting the 'paper' on their website(s) which will truly make it accessable for all future families having to travel this unfortunate journey.

On a sad note, Julie & I decided in Sydney to part company after 18 years of marriage, (temporary at this stage). I know a lot of people will naturally blame the transplant for this, but other than bringing things to a head, it wasn't the fault of the transplant. This might explain to some people in Sydney why we left without saying goodbye. So my contact details (Michael) are M (personal) 0434 463 118; W 0404 837 601 (returning to work on 3/11/08). Email: Krelsh@virginbroadband.com.au
Address TBC.

This blog will continue as required for updates about Lauren and her progress, albeit less frequently. (next major date is day +100). I was recently revisiting the original blanket email updates I used to send, which were replaced by this blog and its updates, thanks to the advice of some nurses at Adelaide, and can't believe how much we've covered and achieved over the last 12 months around Lauren's treatment. If anyone told us last year everything we'd be doing over the next 12 months, I would have told them to go jump (...more descriptive of course!!!). But looking back, we've met some wonderful people both in Adelaide and Sydney (Fred & Emily et al) who we'll continue to stay in touch with. And of course above all, Lauren's transplant has gone well.

Heaps of people deserve heaps of thanks from us, but none more than 3 people who gave up the most. Kate & Nathan for being such wonderful and understanding kids and sister and brother throughout. Whilst not necessarily comfortable with all the changes thrown at them over the last year, including going to a new school in Sydney, they have not only grown and developed but also never complained along the way as they always understood why we were doing what was needed to be done.

Also, my Mum who on numerous times dropped everything in Sydney to live with us in Adelaide as needed, to help look after the kids and spend time with Lauren in hospital and has been a great source of inspiration to Lauren along the way.

There's heaps more people we need to thank, but these 3 particularly changed their lives to fit around us and their love & selfless acts will always be remembered and appreciated

Update #54. Happy 14th Birthday Lauren. (Day +59)

Today saw us celebrate Lauren's 14th birthday - a birthday at one stage we wondered if we'd ever get to. Thankfully we have, with many more to come!!!! All continues to go well with Lauren and her last appointment at Sydney Children's hospital is tomorrow. The staff here have been fantastic and we're a bit apprehensive of leaving given the team here have been involved totally throughout the transplant.

Tuesday sees Julie and the kids fly home at last, with Michael driving back on Thursday/Friday.

Thanks to everyone for their support throughout this transplant. We will publish a photo of Lauren for the Sydney nurses once her hair has grown back, as promised.

We're getting a lot of texts about catching up when we're back, but just a friendly reminder, we can't take visitors at home until day +100 for Lauren's benefit. Please be aware of this as we really need to stick to this for obvious reasons.

Kate & Nathan finished their term at Rainbow St School on Friday and have had a rewarding experience here having made new friends, but are also keen to get home to see their friends there.

Photo's below are:
Kate's 9th Birthday
Kate & Nathan with their respective Teachers at Rainbow St
Lauren's last taste test with Jen the dietician
Lauren's 14th Birthday

Update #53. Day +55. Going home!!!

Hasn't been a lot of news the last couple of weeks, except Lauren finally got her nasal tube out last week and will now allow us to take photos of her. We haven't done much of late except visit the hospital for blood checks as she still can't mix with people. A recent drive to the Gap gave her a chance to see something of Sydney.

We've been OK'd to return to Adelaide next week, so please don't continue to use the PO Box in Randwick to mail us anything. The PO Box closes this Friday/next Monday. We're just waiting to confirm flights etc. Lauren can't wait to see her dog, Jemma again (the one contact she'll be allowed). She is still in isolation until day +100, so please be aware of this.

Her 'creatinine' levels (kidney reading) are still fluctuating but seems to be maintaining suitable levels with the fluids she drinks each day. Time will tell as this is the first week we're not using IV fluids as well. Aside from this we've been lucky in that Lauren hasn't needed to be hospitalised overnight since she left the transplant room - seems like so long ago now.

Congratulations to all those who walked in the 'Light the Night Walk' in Adelaide last Wednesday. We heard it went really well....and thanks for the pictures!!

So all going well, we should be back next week, see you then.

Update #52. Day +45. Hello from us all.

Hi all,

Well here we are on Sunday arvo, it's pouring with rain and I must admit feeling a touch homesick. We are ready to come home.

Lauren is now home at the apartment with us and we still go in every second day for blood tests and depending on those results she sometimes needs iv fluids or other treatments. A CT scan on Friday still showed those spots on her lungs, if it is a fungal infection it is being controlled by the drugs she is on. Even though she keeps herself busy with computer, crafts, DVDs etc she just wants to be able to go out and do somethings around Sydney e.g. shopping, hot chocolates at a cafe (I taught my kids well). Even though she doesn't say anything I feel she is getting frustrated when Michael takes Kate and Nathan out and it is always places with people which is a no no for Lauren. Trying to be more creative with places we can all go.

This week has been mixed emotions for us, as on Tuesday we heard that friends from the Oncology ward in Adelaide received the news that their 2 year old had relapsed and will be going down the Bone Marrow Transplant path. I so know the feeling of where they are at and it's horrible. In one way we feel that by us being here and our experiences will help others in the future. Trying to look for a positive !!!!!

On a brighter note, we know that lots of you are doing the Light the Night walk this week for the Leukaemia Foundation. Thank you for being involved, they are a great organisation and also doing lots of work in the research area, so hopefully one day kids/adults won't need to go through all this. The volunteer driver we had from the airport was the most amazing man and volunteers for the Leukaemia Foundation. He gives back because he was sponsored by a man to come out from South Africa at a time when if you spoke up against the Govt - you just disappeared. He was a businessman and knew his family and himself were in danger. An associate (think dentist) sponsored him to come to Australia many years ago and organised him to get out quickly. He made a life for himself and his family grew up here, but by the time he followed up where this man lived, he discovered he had died a few months earlier from cancer, and he missed the opportunity to say thank you. So he says he volunteers and hopes in some small way this is the thank you he never got too say. I thought this was a beautiful story (one of many I am going to bore you all with when I get home).

This morning we went to St Pauls Lutheran Church in Sydney city, we have had so much support from Pastor Fred and people in his congregation, our dear friend Emily is from there and the support she has given us all has been awesome. Also enjoyed coffees with Fred discussing the big questions of life. Actually meeting all these people has been another definite positive for being in Sydney. After typing all of this I am not feeling so homesick and actually will miss all these incredible people, but are so looking forward to seeing you all when we get back, and I hope you haven't forgotten about saving those good reds for us to share !!!!!!!

Another great thing I am looking forward too is next weekend when my dear friends Kathryn and Sarah come up for a couple of days - girls I warn you now get those credit cards ready. (hope Rob and Jon are not reading this) all jokes aside, just really looking forward to seeing some friends from home. Miss you all !!!
Won't even go into my recent afternoon when I got my hair done - suffice to say John (friend and hairdresser) is extremely cheap in Adelaide. Should of known, I went to a salon in a shopping centre where Joh Bailey also has a salon) people must take out personal loans up here to get their hair done !!!!! But saying that, the Doctors even commented how nice my hair looked !!!!!

Hope this finds you all well, this week we celebrate Kate's 9th birthday and continue with the blood testing for Lauren, I am hoping she will be able to get the nasal tube out soon.

Love to you all

Julie
xxxxooooo








THOUGHT FOR THE DAY
A married man should forget his mistakes. There's no use in two people remembering the same thing!

Update #51. Day + 38. Goodbye Room #19

Lauren has continued to progress and today saw her use her room for the last time on a day visit. Tomorrow a new girl comes in for a new transplant. We still need to go into the hospital each day for fluids as her kidneys are still throwing out a high reading as a result of the drug combinations currently being taken. She now spends the nights at 'home' and still has the nasal tube as we use it to also feed extra fluids. Hopefully they'll find the correct level for the drugs so her readings return to normal. We're getting closer. Aside from that, haven't been doing much as Lauren is still isolated from people for 100 days.

Attached pictures show Lauren's 'wall' coming down the last few days with the room now looking more like a typical hospital room. The pictures made a huge difference to the feeling in the room for Lauren and us staying with her. So goodbye to Room #19 in C2West. The staff in this ward have been excellent and made a difficult situation bearable through their professionalism & care.







The other picture is Patsy, the PSA I mentioned in a previous blog who's worked on the ward for 33 years and for the last 30 years has cooked a barbeque every Saturday (except when on leave) for the cancer kids and their families. I've met people who have earnt some huge incomes over the years but no-one comes close to the difference this lady makes in what she does and how she does it. Why people like her aren't put on a pedestal rather than drug addicted footballers is crazy (a broad generalisation I know), but I'm sure people know what I mean. She's one in 20 million!!!!

Update #50. Day +33. Day leave, to night leave, to back in hospital

Since last update Lauren has had a few more days "gate leave" and was fantastic for her to spend Friday and Saturday night at the unit. Sunday night saw her return to the ward as one of her kidney readings is going the wrong way and they've put it down to a chemical reaction from the combination of drugs she's on - particularly from the drug for the suspected fungal infection. She's been on hydration through the night on Sunday, Monday and tonight as she's now drinking enough through the day herself, but the readings were still declining until this mornings reading. One of the expected hiccups along the way. She's been surprisingly well and I think the leave from the hospital is actually helping her spirits soar. Although we've stopped taking her out too much.

One of our early blogs when we arrived in Sydney was the other Adelaide girl who was in the next room at the time was going home soon after a successful transplant - well she may be going home this week, although she's now got Shingles. So we're not going to push it with the field trips too much. You just don't know.

The good news is Lauren hasn't had a full blown fever for a long while now which has helped with her feeling so well. She challenged one of the nurses to a singstar competition the other day. Lauren won the first song, Tina won the second, so no doubt a playoff brewing. She wanted to stay in and continue the challenge rather than leave the hospital (I think the drugs are now playing with her mind), but thankfully the nurse had a talk to give at a meeting and had to go.

Hb 89
WBC 3.50
PLT 130
N 1.7

Update #49. Day +27. Day leave again (afternoon at least)

Today saw Lauren get day leave again in the afternoon. She had to wait for a visit from the infectious disease Doctor to look into a suspected fungal infection in her lungs, so she filled up a bit of time learning guitar with the music therapist.

She's being treated for a possible fungal infection as a result of the scans over the last few weeks here and months prior in Adelaide - the cause of the delay in the transplant in the first place. Having said this, they're still happy for her to have day leave at the moment. Whilst she's not getting fevers, her temperature spasmodically keeps running a little on the high side indicating something is brewing somewhere. The only way to be 100% certain is to operate for a biopsy as it's so small and not very accessible - which is not an option, so she's just being treated as if it is fungal infection. More drugs, but thankfully can be taken orally rather than the drip (Christmas tree is just about dead now, yeah!!!). Drip just goes on at night for feeds, more as a top up for fluids as of tonight.

Tonight Kate & Nathan got a cooking lesson for scones from Janelle of Channel 10's, "Ready, Steady, Cook" show who volunteers at Ronald McDonald house once each week and Ambassador for same. Lauren used to watch the show in Adelaide and wants to meet Janelle when she's allowed to mix with people again.

Hb 88
WBC 4.09
PLT 146
N 1.4

Update #48. Day +26. Lauren's first day leave from hospital

Today saw Lauren leave the hospital for the first time after 36 consecutive days . Was great to have her out and have the family together for a short time after Kate & Nathan came home from school. Last night they opened up a room so the family could be together for the first time in over a month and today saw this go to a new level where she got to leave the ward during the day and see some of the local beach areas (whilst avoiding people), as she is still at risk of infection, particularly up to Day +100. Her blood counts continue to go well and no fevers for a number of days now.

Bought some alcohol wipes today to maintain cleanliness - only issue is they only come as a carton so we now have 1,125 wipes, which should see us wiped clean for a long time yet!!!!



Hb 90
WBC 4.10
PLT 129
N 1.4