All looks about the same but just waiting on todays blood results. I'm feeling a bit defeated on the home front and like I've lost my place there a bit. I went home last night and it was just difficult. In their own way everyone was pushing the boundaries (Emma didn't want to wear her school uniform to school, Jasmine fluffing around taking forever to eat breakfast and get dressed, Madeline hitting her sisters and pretending she couldn't hear me talking to her....). Not that bad in the great scheme of possible behaviours, but after many many days of the same things being issues before Lucy was sick, and with my whole new lack of patience I just feel icky after I spend half my time at home being cranky mum. Mmmmmm...

Of course we did have some nice time now that I think about it. As always, reading books is a great way to head off some unpleasant behaviour and spend nice time together doing something constructive. Maybe I should just write on my hand in big letters "READ BOOKS" when I go home so I don't forget, particularly if it's raining like it was yesterday. Baby Brains is always a big hit with my kids for some reason. We're also enjoying A Proper Little Lady and Not a Nibble sent to us recently by the lovely Davis' - thank you!... what are you reading??

I'm very grateful to Mum for staying at the hospital yet again last night as Adam got stuck in Dubbo. Thankfully Lucy slept well and was happily sitting up in bed clapping and banging her drum when I arrived. At least she doesn't yell at me! I'm sure I'll be stressed in the future if Lucy is particularly delayed with speech, but some days I'm very grateful that she can't talk yet.... (is that bad to say?....).

Enough moaning, here are some pictures.

It is so wonderful to feel safe in the hands of our Father who knows us and loves us - and whilst I cannot imagine life without Lucy, or imagine how we will get through the next 4 or 5 months or longer, or if she relapses after getting into remission, what a comfort to know God promises to sustain and care for us and our family and give us what we need.

Well it looks like Lucy has kicked the fevers and is doing ok on that front, but sadly we wont be able to leave hospital until her neutrofils (kind of white blood cells) start to pick up. She has 0 at the moment, and needs to get up to 0.2 before she could possibly go home, and up to 1 before she can start the next round of chemo. She may surprise us and start producing some soon, or it could take a while (like another week or so). Her other white cells have increased a little bit today, so it may be that the neutrofils will follow soon.

I seem to have left the cord to attach the camera to the computer at home so I can't add a photo from today - but just imagine Lucy having fun playing her doggy xylophone....

I'm very grateful for visits from , Nicola, Julianne, David and Vic over the last few days - they do much to lift my spirits and encourage my heart on this long road, so thank you for making the big effort to come. Lucy doesn't mind seeing you either!

It's hard to believe but it's Lucy's 1st birthday next week. If she's well she'll be having chemo which is a bit of a bummer, but hopefully she wont be feeling unwell. We're trying to work out what we can do to celebrate in here with the family (lets face it, the 1st birthday is more for the family than the child isn't it!). Maybe just a little cake.... It feels completely wierd to me that it has been a year since Lucy's birth. A crazy, difficult, heart wrenching, joyful, encouraging year. So many things come to mind as I reflect on the last year. So much has happened and life has changed so much. In God's kindness we are all still standing, learning to take things one day at a time, trusting in Him to give us what we need, which He does in abundance.

Just a quick update - Lucy's temperature has spiked again, but she has had some panadol and is now finally asleep after a long day with lots of crying and unhappiness. She seems quite uncomfortable, especially when filling her nappy, so I'm a bit concerned she might be starting to get some ulcers or something.

Lucy did get to enjoy some time with the lovely McKerlies today, which also gave me a nice break to have some lunch. Thanks so much! It's nice that she's asleep though!

Please pray the fever thing would resolve soon.

On Sunday afternoon Lucy spiked a fever and we had to return to the hospital. We're back on the Camperdown Ward, and Lucy is less than excited to be here. Lots of crying and being generally unhappy.

We are sharing a room again (with a teenage boy!) which makes everything a lot more stressful. It means I'm a lot more concerned about Lucy crying, especially at night (which she did at length and considerable volume at 3am this morning having wet through all her clothes!) and the daytime routine is much harder. She had to have lots of observations overnight as she was on antibiotics and also having blood transfusions as her platelets were down to 7 (lowest ever) and haemoglobin down to some low level I can't remember. She's currently asleep in the pram as the bed was just too light and noisy.

Please pray her fever would stay down, and that she'll respond quickly to antibiotics if there is an infection and that she'd recover her happy temperament! I don't feel like I'm coping very well in the hospital any more so please ask for patience and the ability to hold it all together for me...

Anyway, sounds like she's waking up so I'd better go sort her out.

Hi all, sorry for a quiet week. Thankfully it's been quite uneventful from a Lucy point of view! She's been a bit vomity, but otherwise quite well. Her blood levels are low, but stable, and she hasn't needed any more transfusions this week although she's likely to need some next week. She's eating reasonably well, not drinking heaps - she's settled on pretty much just having a breastfeed in the mornings and maybe a little at night, and we're trying to get her to drink some formula from a cup, with mixed success (well 'success' would be putting way too positive a spin on it....).

Adam has been away for work part of this week, and whilst we are well supported with great help from our families and friends, I can't help but feel bit like my legs are missing or something when he's far away! Since Lucy has been sick Adam has been the organiser extraordinair keeping everything going at home. Even though everything was covered (and sometimes doubly covered - sorry for the mixups Katie and Penny!) I just feel like my brain can't cope with the logisitics required to keep everyone cared for and in the place they should be. Combined with a foggy head, fractious children and a bit of vomit, there were a few ugly moments. It's feels ironic that Lucy is actually the easiest of the bunch to handle!

Anyway, true to character I figured cupcakes were the answer and yesterday we tried a new recipe for chocolate cupcakes that included cutting out their centres when they were hot and poking in marshmallows which went delightfully squoogy! Very good, and also enjoyed by little cousin Sophia.

I've been struggling to read the Bible at all lately, and had a thought driving to the hospital one day that maybe some music would help me get back into the Word. For someone who has never bought Christian music other than Colin Buchanen and a few Emu CDs I wasn't sure where to look. Remembering a song my lovely friend Karin shared with our Bible Study this year I thought I'd get the CD that song was on - Casting Crowns Livesong or something. Anyway, here are some of the lyrics of their beautiful song "Love them like Jesus" which helped to refocus my thoughts and feelings about life, the kids and all that....

Just love them like Jesus, carry them to Him
His yoke is easy, His burden is light
You don’t need the answers to all of life’s questions
Just know that He loves them and stay by their side
Love them like Jesus

Lord of all creation holds our lives in His hands
The God of all the nations holds our lives in His hands
The Rock of our salvation holds our lives in His hands
He cares for them just as He cares for you

So love them like Jesus, love them like Jesus
You don’t need the answers to all of life’s questions
Just know that He loves them and stay by their side
Love them like Jesus
Love them like Jesus


Hopefully Lucy will be out of hospital for the next 10 days or so before her next biopsy and 3rd round of chemo which I think will be 4 days straight in hospital. We are thankful as ever for her great tolerance of the treatment so far.


We are hoping to have Lucy baptised at church soon - maybe after the next round of chemo. We're looking forward to celebrating what Jesus has done for her (and all of us!). It is so wonderfully comforting to know she (and all our family) is completely safe in His hands, whatever happens.

This little girl is amazing! Lucy is continuing to go well, with a good report card from the clinic. Bloods are going well (no need for any transfusions today) and she is still well, free from any infections or other troubles. Her white cells are dropping which is to be expected after the doses of chemo, so she will become more susceptible to sickness over the next week which is a bit of a dud because I'm sick! Not feeling too bad now, but last night and this morning was feeling decidedly unwell.

I think as a result of feeling unwell I've also felt a bit overwhelmed by everything and wanted to hide in a hole for a while. It's probably good that having 4 children (and a husband!) doesn't allow too much opportunity for that, and I'm feeling more positive and together this afternoon. I think my mood is often a bit weather dependent so yesterday's miserable grey clouds didn't help. Hooray for sunshine and blue sky today!!

I've been feeling the lack of pictures the last few days so here are some of Lucy at home yesterday....

And here are Lucy's bravery beads!

Cure our Kids runs this programme to reward children with cancer for the immense courage they need to undergo treatments. Each time your child undergoes a treatment they are entitled to another bead (see the index below too) so as time goes on the child will gain an increasingly decorative set of beads representing all of the courageous steps they've taken. Lucy might be a bit little to understand all this now, so for the moment they can be parents bravery beads! When she's older we can show and explain them to her. How lovely is that!

All went reasonably well with the needle, she was asleep at the time so at least she wasn't crying before the needle from being held down. I think that being held down is actually the thing she objects to most. The needle obviously woke her up, but after a brief cry was quite happy. Once again not much of a reaction and we were able to come home a few hours later. We have to give her eye drops a few times a day, as a common side effect of the high dose cytarabine chemotherapy is sore and itchy eyes. She HATES having the eye drops, and is quite an expert at screwing them shut tight. Thankfully we only have to do them for a few days.

Anyway, we are back at the clinic on Tuesday, I will try and get my act together with some pictures tomorrow!

Thanks for your continued thoughts and prayers,
Liz