Update #42. Day +16

Hb 111
WBC 9.88
PLT 42
N 9.2

Whatever the infection is, continues to give Lauren a fever and making her sick and subsequently uncomfortable. Thankfully she hasn't vomitted up her nasal tube these last few days. You can see the rise in her neutrophils (N) trying to fight the infection itself. Unfortunately, to assist combat the fevers a cannular (drip into her hand, which she hates) was inserted today as they needed another line into her and her 'port' is already fully utilised with numerous drugs. This also meant the return of another pump to the 'christmas tree'. Hopefully they'll be able to ascertain the cause/location of the infection soon.

Tonight the Concordia card came in handy to fan Lauren down as she is terribly hot and already on whatever medications are available, to make her feel more comfortable. New antiobiotics they started yesterday might do the trick soon. Process of elimination - not an exact science at all.

Thanks for the emails about people joining the 'Light the Night' walk. Wish we could be in Adelaide doing it as well. (see update #40 for details).

Kate & Nathan got a break from living in the unit this week when we found a great park in Coogee, with one picture here showing them joining us for our late lunch last Thursday. Today they got to see some more of Sydney with another ferry ride, this time to Manly - always therapeutic being on Sydney harbour.

Update #41. Day +15

Hb 104
WBC 9.10
PLT 47
N 7.2

Hi all,

Michael and I are both in hospital with Lauren at present as she is really unwell. Has had consistent high temps (40') throughout last night and today, blood pressure low and is extremely nauseous/vomitting intermittently. Doctors sent her for CT scan this evening trying to work out where possible infection is. They assured us that this is all part of it (I think they say it to make you feel better) they are trying to give her medication to ease nausea, then she vomits!!! vicious circle.

Feeling low at present as Lauren is so sick again, (bummer - as she was starting to be more alert and feeling better) please, please keep praying and sending positive vibes to Lauren (some for me too please!!!!) hopefully get some news on the scans soon, believe they are speaking to radiology dept now.

bye for now
Love Julie

Update #40. Day +14 (2 week mark)

Hb 109
WBC 9.65
PLT 45
N 4.5

The good news is some of the pumps on the 'christmas tree' are starting to disappear (well one anyway !!) or others are not being used continuosly anymore, which must be good.

Lauren spent today with a fever and has been feeling sick as they try and increase her feeds through her nasal tube. Thank goodness when she sicked up a few times today the tube didn't come out - how we are grateful for little things like this. Mucositis has just about gone - it certainly isn't troubling her anymore if it's there.

Julie & I had lunch together today for the first time since being up here, at Coogee beach as Grandma spent the afternoon with Lauren. Coogee is magic. Could easily live here.

By the way, anyone interested in joining a team for the 'Light the Night' walk in Adelaide on September 17, there's a team being registered by neighbours. Visit www.lightthenight.org.au or call 1800 500 088 for details. Under "join a team" search for: "Invergowrie Ave Friends of Lauren" and follow the links from there. Thanks Louise for organising this (see Update #34).

Update #39. Day +13

Hb 105
WBC 12.09
PLT 31
N 5.8

We know everyone is most likely aware of the good news regarding Lauren engrafting by now. Thanks for all your emails, text messages, phone calls and apologies if we don't respond to all of them as there were heaps (and thanks for them all).

Lauren phoned me to tell me the good news yesterday morning (Julie and I alternate one night with Lauren and one 'home' to recuperate (which can happen once Kate & Nathan go to sleep) as you don't get proper sleep when in the ward) - wish you could have heard her telling me on the phone - was obviously scarier for her than she was letting on along the way and one major weight has been lifted off her shoulders. She's faced something many people who are reading this blog (including me) have yet to do - actually faced their mortality. We still need to go through graft V's host disease (GVHD), but at least we do so knowing the new marrow has at least taken. She sent us the following email which is golden.

hey mum & dad, just a little note 2 say thanx 4 everything u have done 4 me!! u have helped me get through this!! I LOVE U!! LOVE Lauren xoxoxoxoxoxoxoxoxoxooxoxoxoxoxo
http://www.00fun.com/wordsoflife.shtml

You may notice the white blood count and Neutrophils today have reduced since yesterday's reading - this was expected as they turned off the GCSF yesterday (Granulocyte colony-stimulating factor), a stimulus to promote growth of new white blood cells, particularly neutrophils.

Lauren received a huge card (filled with numerous other cards from the kids and teachers at Concordia College which made her day and she wants it set up on a special place on her 'wall'. We need a fifth wall!!!!!
nb. please do not send flowers as they are not allowed in Lauren's room or the ward because they can carry living organisms/potential infection etc.

Update #38. Day +12 Engraftment!!!!!!!!!!!!!!!!

Just wanted to say Hi to you all

WOW what a day today, Doctors walked in this morning and said we have some great news, “Lauren you have definitely engrafted !!!! which means the donor cells are now working." Lauren just burst into tears and then so did I - Oh my gosh those were happy tears mixed with so much emotion of this huge journey !!!!! We still have some hurdles in front of us but I feel like we are on top of that mountain, at the peak!!!! I wish I could explain this to you all, to know what this feels like is unbelievable, I just keep crying all the time. Think I need some retail therapy this arvo !!!!!!!

As many of you know I really struggled last week with seeing Lauren so sick. I have never seen someone so sick and weak before, and not being able to do much about it was really hard. Doctors said she will start to feel better as cells come in and that has definitely happened, still very weak but a little more alert and able to have a few sips of drink, Gets on her computer for awhile but gets too tired. One of the hurdles we now have to watch out for is the Graft Vs Host disease, the Doctors want to see some of this but not too much, so looking everyday for strange rashes and checking liver, gut function as it can affect the liver, so keep those prayers up, we are not out of the woods yet.

Girls - any suggestions for good hand cream? Have been using Hemp Cream from Bodyshop but these alcohol wipes etc are taking their toll – can’t afford for hands to get cracked as that can be infection risk for Lauren, so trying to use gloves as much as I can.

John (friend and hairdresser) hope you are reading this – please order in the industrial strength colour for my hair when I get back, the grey hairs are taking over!!!!!!!!

Thanks again for all those prayers, positive thoughts and love you are sending – feel them all the time.

Missing everyone

Love Julie

Hb 85
WBC 21.21
PLT 36
N 12.7 !!!!!!!!!!!!!!(>0.5 for for third consecutive day = engraftment)

Update #37. Day +11

Hb 106
WBC 10.07
PLT 37
N 6.2 (second day in row > 0.5)

Basically tomorrow if Lauren has a third day in a row where her neutrophils are greater than 0.5 again, they'll consider her new marrow to have engrafted from day +10 !!!! No fevers through the day today.

Still have to go through graft V's host diesease (GVHD) but at least currently on the right track (and coming in early at this stage). Some drug they're giving to assist in the creation of neutrophils is being reduced today or tomorrow as her bone marrow seems to be picking up the challenge itself.

By the way, the blood readings on these blogs are mainly for there aside from our own record, for the nurses and Dr's at W&C Hospital following Lauren's progress and a few friends in the medical fraternity who know what the numbers mean.

Also, if anyone from St Johns is looking at going on the 'Light the Night' walk in Adelaide on Sept 17 or organising a team (see Update #34), can you let us know via email as a family who used to be involved with St Johns, now living in the hills would like to join in.

Update #36. Day +10

Hb 120 (ref range: 115 - 165)
WBC 2.93 (ref range: 3.50 - 11.00)
PLT 20 (ref range: 150 - 450)
N 1.6 (ref range: 1.7 - 7.0)

Good numbers from Lauren's neutrophil (N) increase. We know the medical team are very happy to see these numbers coming through already. She's been feeling lousy today with a persistent bleeding nose. A platelet transfusion today hasn't solved it yet. Has kept her awake all day and she is now very tired, but finding it hard to sleep with the bleed. They've just 'packed' her nose which hopefully, will allow her some sleep now. Fevers are on & off through the day currently.

Caught up with the Borgas family from Adelaide who were in town for the weekend and joined them with Nathan & Kate for a ferry ride to Olympic Park and tour.

Update #35. Day +9

Lauren was much better today. Was able to get out of bed for comfort breaks on her own - first time in a while. Also for most of the day the fever was gone, which is making a real difference in how she's feeling. She ended up waking up last night and watching some of the Olympics opening ceremony after all. Whilst we know Graft V's Host disease (GVHD) is yet to hit, it's nice to have her feeling better for a while to give her a chance to recuperate for the next stage. (She's also giving lip, which is always a good sign she's feeling better).

Had 1 unit of red blood today, so her haemoglobin (HB) should be higher tomorrow. Also, too early to call, but it's nice to see nearly 1/3 of her new white blood count (WBC) show up as neutrophils (N) which must be her new bone marrow producing. We have been warned this can be very volatile at this satge, but none the less, a good sign.

Had a photo of 'Patsy' to put on today's blog, but lost the photo. Patsy has worked in the Oncology ward for the last 33 years at Sydney Children's Hospital and for the last 30 of those years has cooked a barbecue lunch every Saturday for the kids and their families, except when she's been on leave. Incredible lady and great barbecue. Will have to get a new photo next Saturday.

HB 80
WBC 0.66
PLT 56
N 0.2