Tuesday, October 30, 2012

Memorial Service

Dearest Family & Friends,

A memorial service for Princess Nicola is going to be held on Friday, 02/11/12 at 2pm AEST at Woongarra Crematorium, Townsville.

We invite all Family and Friends to attend to help celebrate the memory of our special Princess.

Flowers are also welcome and can be sent to:

Woongarra Crematorium
Bruce Highway
Townsville, QLD, 4810

We will be doing a commemorative balloon release of pink, purple and white balloons after the service.  

We thank you for your love, your support and your prayers during this very difficult time.

Saturday, October 27, 2012

Sleep Sweet Precious Angel

It is with much sadness that we advise that Princess Nicola passed away this morning.

She passed peacefully in her sleep, surrounded by friends and family who love her.

Fly free sweet Princess, may your angel wings guide you gently home.

♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  ♥  

Princess Nicola
05-09-08 - 27-10-12

Thursday, October 18, 2012


There are so many things that really bug the hell out of me about social media, especially Facebook.  

There is a quote that I have seen around a few times...  it says:

"Welcome to FACEBOOK.  The place where people add you as a friend, but walk past you in the street.  Where relationships are perfect and Liars believe they are telling the truth.  Your enemies visit your profile the most, yet friends and family block you...  and even though you write what you are really thinking, someone always takes it the wrong way or assumes your post is about them."

There is so much that annoys me...  I don't like the text speak, I get bugged by the annoying profiles that parents make for their very young children, or even worse, their dogs!  and I despise the way people comment on your every status, even though really you know that they couldn't care less, but they're trying to make themselves feel better about their own lives...

I get annoyed by the people who update every single little thing...  "Oh, I got a drink of water, how awesome am I?"

Or the people who update nothing except drama, drama, drama!

But mostly, more than anything else, I completely, totally and utterly LOATHE the term FML.

For the uninitiated among us, FML stands for F*** My Life.

"My shirt won't button up over my boobs....  FML!"

"My kid spilled foundation on my carpet...  FML!"

"I can't find a pair of brown boots in size 10...  FML!"

"I can't afford tickets to P!NK!  FML!"

I mean...  come on...  seriously?

If the worst thing that you can complain about is that you have big boobs, or you can't afford tickets to go to a stupid concert, then really, you need to step back, stop and think, and take a very, very long hard look at your life...

Then step out of your bubble, and look at the world around you.

Tonight, this is what is happening in the world around me.

In Kentucky, a family is mourning the loss of a beloved son who passed away from cancer at the age of 13.

In New England, a woman is watching her husband in Intensive Care after he was shot in the head because he happened to be in the wrong convenience store at the wrong time.

In Texas a mother is praying that something, ANYTHING, can be done to help her baby.

In London a mother is watching her beloved child suffer in excruciating pain while she is waitlisted for extreme surgery that most people could never even begin to fathom.

In the capital city a family has been told that there is nothing more that can be done for their precious daughter.

A few hours away, a woman is faced with losing her mother.

In a neighbouring town, a mother is sitting by her child's bedside as her child struggles to breathe...

And here?

Here, I sit...  I am listening as my husband holds my screaming daughter who is in pain that you couldn't even begin to comprehend.  Tonight, I am crying with my child, because as she cries, I know there is nothing more I can do except hold her and tell her it's ok.  

Tonight, my daughter is one day closer to gaining her angel wings.

My six year old daughter is blaming herself.  She wakes up five or six times a night screaming from horrific nightmares that plague her because she thinks that she is somehow responsible for the fact that her baby sister is dying.

My five year old daughter is struggling to comprehend what has become our reality.  She doesn't understand, she can't even begin to deal with it, so she just cries...  all the time.

My 20 month old daughter is just dealing with everyone else's stress and looking for the things that make her happy...  her Grandad and her Dora.

All around me, my family is slowly but surely falling apart, and there is not a damned thing that I can do to help any of them.  I can be there, I can hold them, I can reassure them that somehow, when this is through, we will be ok...  

But I can't change it.

My four year old daughter is dying from cancer, and there is nothing at all that I can do to change it.

So...  now...  having read what's happening in my world...  all I want to know is...

Still think your life is that bad because you can't get tickets to P!NK?

Saturday, October 13, 2012

Last Night I Had The Strangest Dream...

Well, it wasn't last night, but it was a couple of nights ago...  and the dream wasn't really so strange...  more...  well... I guess it was sad.

I had a dream that we were going on a holiday.  I don't know why, but this holiday was important, it was so important I had spend years organising it...  I spoke to the hotel repeatedly, I made all the plans, I made sure we had a ground floor room that was easily accessible for Nicola's wheelchair, I made sure we had easy access to disability parking for ease and safety of getting her in and out of the car, I made sure the rooms were completely climate control so that she would be cool enough, and I made sure that we were away from any source of noise and we had good blockout curtains so it would be dark and quiet for her, just the way she likes it. 

I spent so long making the arrangements and I checked and double checked and triple checked and then checked some more to make sure everything was perfect.

Then we set off on our amazing holiday...

And when we got there, the hotel was under construction and it was all just a mess.  The parking lot was fenced off and all the car parks had been excavated.  The temporary car park was 5km up the road and it was blisteringly hot outside.  

The only building that had ground floor rooms had been partially levelled and mostly gutted so there was only a bit of a shell left...  definitely not anything that was even remotely suitable for human habitation...

I went to the manager and I was angry.  I made plans, I made sure every plan was perfect, I checked, I double checked, I triple checked and I checked some more to make sure that all her needs were going to be met...

And now we were here, in what looked like somewhere little better than a warzone.   Around us we could hear both deconstruction and reconstruction.  It was swelteringly hot, it was humid, it was loud, it was dusty, it was dirty...  and the only room they could give us had no airconditioning and was on the fourth floor with no elevators.

I argued, I yelled, I swore, I cried...  I argued some more, but there was simply no other options.

It was at that point I stopped and I looked at my daughter and she looked so weak and just so bone shatteringly exhausted, I knew I couldn't fight any more.  All I could do was to find somewhere that I could lay her down, hold her hand and watch her while she sleeps.

When I woke up, I felt so sad, but I also knew what it meant.

The time is coming that I need to stop fighting for my daughter.  There is no fight left that I can win.  

Looking at her now, my beautiful chubby cheeked daughter is gone.  Her chubby cheeks have disappeared, she is skinny and pale and shadowy.  She doesn't smile, she doesn't laugh, her sparkle is just not there any more.  

Most of her time is spent sitting on my lap cuddling, not watching tv, not talking, not playing...  just cuddling.  

She doesn't even want to watch Wiggles or Dora.

Her pain levels have escalated so rapidly that even the palliative care pain team have admitted that we are starting to run out of options on oral pain relief drugs and we may be looking at moving to an IV infusion soon in order to keep her comfortable.

Last week we found out that she has developed a staph infection in her port.  She developed raging fevers and a really high heart rate.  She has been started on IV antibiotics which I have learned to administer here at home, but they think this infection is what is pushing her poor little body over the edge.  

She is declining rapidly, even her doctor is surprised at the change in her.  

Her body is simply struggling and is starting to shut down.

My bright, happy, cheerful baby is slowly slipping away from me.

And I hate that I just can't fight this.