Update #18. ....Still waiting on transplant date

....Just in case you thought we'd forgotten to update this site - basically no news from either hospital yet (Adelaide or Sydney) on a definite date for the transplant. We know the donor is back in the UK from her holidays, so will update you as soon as we hear further.

Lauren is off all treatment temporarily as she fell ill a bit over a week ago and spent the weekend+ in hospital. Was the weekend she was meant to go on a Camp Quality Family Camp so was disappointed to miss that. Kate & Nathan did go and had a ball (as usual) which made Lauren feel even better (not). Other than that we're just waiting for the date to go. Good news is accommodation in Sydney is all sorted at last thanks to a fluke lead.

Regards,
K's

Update #17. Transplant to go ahead, date to be set

Lauren has had the test on her lung again and whilst the lesion is still present (albeit smaller than previously), the mysterious dot within the lesion has gone (reducing any fear it was fungal infection), so Sydney has agreed to go ahead with the transplant. We're now just waiting for a date to be confirmed as the donor (22 year old UK girl) wasn't available for the first couple of weeks of June and as of early last week, hadn't responded to emails from the Sydney medical team. We'll update you as soon as we know.

Aside from occasional sickness, Lauren is OK and been attending either part to full days at school this last week. Still a bit weak, but getting stronger each day. Recent highlight at the end of her hospital stint for the bowel stoppage was a visit from Natalie Bassingthwaighte, lead singer for Rogue Traders and host of the TV show "So you think you can dance"

Update #16. Home at last

Lauren's finally home after a 2 week stint in Brookman Ward - (on day leave for now, not discharged yet) to see how she manages the pain and will hopefully remain home tonight. Been a long 2 weeks. She had either: 'Paralytic Ileus' or more likely 'Toxic Megacolon' - a result of the combination of Vincristine (chemo) and the fungal drugs + others she's on for the lesion in her lung and other treatments. Basically her large bowel stopped working and whilst the neostigmine injection worked Friday 2/5/08, it's taken another week+ to get through the pain and normal processes to kick in.



Regarding the mother of all head shaves, Rob's head shave raised $5,778!!!which is a huge effort for the three charities i) Hudson Maher Foundation; ii) Leukaemia Foundation and iii) Childhood Cancer Association (see update #12 for details). Some after photos are attached for those who know Rob. Looks younger post shave!!!











So other than day visits to clinic, Lauren should be home until we go to Sydney (fingers crossed) and her follow up test for the lesion on her lung is scheduled for 19th May. So hopefully no more updates until then.....unless someone else wants to volunteer for a head shave!!!

Rgs,
K's

Update #15. Still in Hospital

Lauren's still in hospital. Last Friday she had a 'Neostigmine Injection' to get her bowel working again, which seems to have been successful. The process is slow and the pain still there for now, albeit less intensity & frequency than last week. At least she's getting some sleep now as the cramps are more spaced out. The Doc reckons she won't have the same pain in transplant as the types and amounts of pain killer used last week was stronger than they normally use in transplants.

Just a word, please don't ever send flowers to the Brookman ward as flowers carry a risk for neutropaenic (low resistence to infection) kids. Lauren's not in this state now, but others in the ward are.

The mother of all head shaves was held yesterday and we're waiting for some photos of Rob's 'shearing' to post to this blog. Not sure of final figure raised for the three charities but believe it to be over $5,000 - fantastic effort. Also the Hudson Maher Foundation website is back up & running - see update #12 for address.

Watch out for photos next update. Will let you know when Lauren is out of hospital.

Update #14. Bowel stopped working

Lauren's still in hospital and in a fair bit of pain and sick. Turns out her bowel has stopped functioning as a possible side effect of the chemo (Vincristine) and concoction of other drugs she was on. A gastro tube was inserted today to drain her gut of all the muck. She had 2 enemas today but they didn't work as bowel pumping/functionality has totally stopped. Hopefully will kick in as drug wears off??!! She's encountering a lot of muscle/bone pain all over, all associated with vincristine (chemo). She's never been one to complain about pain, but last night was an exception, so must have been bad.

A surgeon for stomach obstructions had a look at her (for those who know her background re this) but he doesn't seem to think it's a surgical issue/solution required. At least not yet anyway. Hopefully the pain will subside soon and her bowel functionality will kick in. She's on intravenous feeding as she can't eat yet either. Looks like she might miss the head shave after all.

Hopefully better news soon.

Update #13. Back in Hospital

Lauren's back in hospital today as she's in pain from the massive concoction of oral drugs she's on for chemo, possible bacterial infection &/or possible fungal infection, antibiotics etc. She's never had to take so many before. Seems the huge mixture of drugs are making matters worse rather than better and as of today they've stopped the lot until they work out what's happening. So she won't be at school tomorrow and hopefully out for the mother of all head shaves this Sunday (see update #12). Over $3,000 and still counting/collecting, well done Rob!!!

Update #12. Transplant postponed and what's been happening

Transplant has definitely been postponed to early June at this stage, until either the scar tissue in Lauren's lung disappears or it's tested to see if it's a bacterial or fungal style infection. It is the remains of the pneumonia she had weeks ago. Whilst the medical team in Adelaide think it is bacterial, the Sydney Oncology team don't want to go ahead until it's either cleared or diagnosed correctly as bacterial or fungal. In about a month they'll retest and hopefully it will be gone. If not, an intrusive procedure will need to be done which is a bit tricky given it's location and how small it is. If fungal and we go ahead now, could prove fatal with the transplant. If bacterial I gather it's not as risky. If they're not willing to make the call, we're certainly not going to push the issue for the sake of a month and the interruption of our move etc.

A number of people have asked about updates over the last few weeks. Sorry, but with everything going on with the move, work etc we haven't had time to do any. Basically the last few weeks have eased because Lauren finally received some good news in that she didn't need any heavy chemo before going to Sydney as her counts were OK, ~ 2 leukaemic cells/10,000. This gave her the chance to go to school for a few days for the first time this year. We thought she'd do a couple of hours and come home, probably exhausted. Turns out she did 3 full days and had more energy than ever as a result. She also went in the survivors walk in the "Relay for Life" at Santos Stadium. A 24 hour team event to raise funds and awareness of cancer by the Cancer Council of SA. Concordia College to its credit via teacher Dean put in 2 Year 8 teams and raised over $3,100 by the kids who participated. Some photos are attached of the event. At night, the track was lit by candles and messages, quite an awesome sight. For those interested we're looking at organising some adult teams for next year, so let us know if interested in participating and we'll email you (~16 - 18 per team). Great community spirit with bands and tents for those who choose to get some sleep through the night!!

Also Pastor Rob from St John's has offered to shave his head as a fund raiser for 3 charities in support of Lauren and kids with cancer. This would have to be the mother of all head shaves, - have a look at the before photos!!!. Rob is being 'shaved' at 10:30am chapel service, Sunday 4th May at Concordia College chapel for those interested. One great thing about the Sydney move being delayed is we'll now get to see this huge event live. The three charities Rob is supporting by his shave are:

1) Hudson Maher Foundation www.hudsonmaher.com.au
2) Leukaemia Foundation www.leukaemia.org.au
3) Childhood Cancer Association www.childhoodcancer.asn.au

You can pledge your support for Rob's shave or get further details at shavepastorrobshead@yahoo.com and make the donation via the church or direct to the charities above. I understand the oldies in the community are digging deep as they've always wanted the ponytail to go. They might even auction the ponytail off at a later date!!! Will be one of 2 gutsiest head shaves I'll have seen to date!!! Well done Rob. Beanies are in this winter. Rob so far has raised around $3,000 and counting!!! Will keep you updated on this. Wait for the after photos.

The school communities of St John's primary school & church & Concordia College have raised heaps for cancer charities with everything they've done over the last couple of months, which is an amazing effort for such a small community. Not to mention all the meals they've prepared for us over the last 6+ months which "Thank You" doesn't seem enough to show our appreciation. We certainly are grateful & lucky to be involved in such a caring & close community and thank all the staff, parents & kids of all 3 organisations.

Kate & Nathan spent last weekend on a SIBS camp with Camp Quality which gave us a suitable break to pack, albeit, prematurely in hindsight.

Over the next month Lauren will be on a maintenance chemo protocol to keep the leukaemic cells at bay until we re-run the tests and then hopefully go to Sydney as originally planned.

Until next update, The K's (Double click on photos if you want to expand them)

Update #11. Transplant postponed at 11th Hour

Will have to update you more later, but we've just found out Lauren's transplant has been postponed. From tests over the last 2 weeks, a lesion is evident in her lung exactly where the pneumonia was a few weeks or months ago (lost track of time frames). We've got to go to the hospital to meet the Dr once we all get out of the foetal position from each corner of the house. Will update you more later.