Tuesday, September 25, 2012


I have spent hours staring at a blank white blog page, trying to find the words, to put words together, to try and do something to explain...

But words fail me.

I think the problem is that when I write, I write my feelings, I write my emotions...

And right now, I am just emotionally numb.

8am this morning we got the phone call we had been waiting on...  a call from Nicola's oncologist in Brisbane...  with the results of Nicola's MRI from yesterday.

We knew yesterday that it wasn't going to be good news.

Today it was confirmed.

The cancer has spread, aggressively.  

It is impacting most of her major organs, but predominantly it is impacting on her kidneys and her bladder.  Both her kidneys and her bladder are swollen and not emptying properly. 

Her blood tests show that her kidney function is impaired.

There is nothing that can be done.  Surgery is not an option, no surgeon will do anything invasive because it will only cause her pain and will not buy her any more time.

Further chemo is not an option because she has severe renal impairment.  

We are officially out of options...

And with how rapidly she has shown progression of disease we are now fast running out of time.

If we are lucky, if we are REALLY lucky, we may have a few weeks.

If her health deteriorates, we may have a matter of days.


That is what my daughter's life has been reduced to.

This time last week we were in California.  We were high on happiness at Disneyland.  We were celebrating and enjoying the time of our lives...


Today I don't know what to think or feel.  

I feel hurt and angry...  I feel confused...  I feel alone in a room full of people.

I want to pause time, I want to pick her up and hold her in my arms and make time stand still so I can stay in that moment for ever...

But I can't.

Instead every hour seems to be zooming past at an alarming rate and I just don't know what to do next.

I feel overwhelmed...  and lost.

I feel numb.

Sunday, September 23, 2012

A Very Magical Gift

A couple of weeks ago we were given the most magical gift.  Really, it all started more than a couple of weeks ago...  but, two weeks ago it happened.

We took Princess Nicola and her three sisters and we boarded a plane and we went to Disneyland.

To say that the experience was incredible is the understatement of the century, but what made it even more spectacular was that it was a gift, an incredibly humbling and touching gift from my daughter's school and our school community to our family.

A gift that gave us an experience that we can never, ever, in a million years hope to replicate.

I know there are going to be some people who will shrug that statement off.  I know, yeah, it's just Disneyland.  We can always go back...  No matter what happens in the future, Disneyland will still be there...

But I know it will never be like that again.

I mean, to start with...

That is just one of many photos that shows the importance of the trip.  There are four children in that photo.  Count them...  four...  one...  two...  three...  four.

That is something that I know in my heart I will not be able to achieve again.

The inclusion that we found for Nicola was just absolutely phenomenal.

Disneyland is often referred to as the happiest place on earth, and to be honest, I can understand why.

Everywhere we went within the park the staff went out of their way to ensure that we had a positive experience.  

Everyone showered Princess Nicola with love, treasures and trinkets.  Every experience was astounding...  and many times both Michael and I found ourselves stopping and taking deep breaths.

We had to stop, we had to breath because most everything that happened took our breath away, humbled us and made us incredibly grateful for this amazing gift, but also reminded us of why this trip was so very important... and how incredibly fragile the happiness we found was.

But, for the most part we managed to put our emotions aside long enough to revel in the joy of our children as we watched them on the experience of a life time.

We ended up trading up our 4 day passes to include an extra 5th day, just so we would have more time to revel in the magic that is the happiest place on earth.

Now, we are home...  we got home late Thursday and the last few days have been manic busy, but still, each day has been peppered with reminders of the most incredibly, amazingly, magically happy holiday that we could ever have possibly hoped to have taken...  and the fact that it was such a special gift made every moment all the more precious and all the more magical.

To everyone who helped to make this happen, thank you.  From the bottoms of our hearts, thank you.  You have given us something that cannot be quantified.  You have gifted us with memories, you have made a dream come true, and you have blessed our family more than you could ever even begin to comprehend.

No matter what happens in the future, no matter what tomorrow will bring, we will always have Disneyland.

Friday, September 7, 2012

A Belated Birthday

To my most beautiful Princess Nicola,

It has taken me two days to write this post, two days to work my way through the complex emotions surrounding everything at the moment, especially the emotions surrounding your birthday, which was two days ago.

Two days ago, you woke up, and I held you in my arms. I snuggled into you, grateful for your warmth, your presence, your comfort... I was even grateful for the way you fought against me holding you so closely... because that fight meant that I still had you, here, in my arms, where you belong.

It is so very very hard to believe that we have now been on this roller coaster for four years. For four long years we have fought long and hard to keep you here with us. Even before your birth... we didn't know there was anything wrong, we didn't know there was anything different, we just knew that you were going to be unique.

When the Obstetrician told us at 34 weeks that you would be induced the next day, I knew we were in for an interesting ride, but I had no idea how interesting it would be.

You have, in your four short years, taught me the highest of highs and the lowest of lows. I have seen you through so much... I have sat by your bedside holding your hand, listening to the incessant alarm of the ventilator... I have stared down ICU doctors who told me you wouldn't survive the night, and I knew you would prove them wrong.

I have had faith in you, faith that your strength, your determination, your willpower, and my love could see us through absolutely anything.

Now, in the face of your fourth birthday, I find that strength and determination wavering, and as much as my love is still standing firm, I know that our time is limited... which is why this birthday has been so particularly hard.

There are so many birthdays that you still have to come, so many birthdays that I want to share with you. I want to be there when you reach double figures (10). I want to be there when you become a teenager (13). I want to be holding your hand as you reach sweet sixteen and then pass into adulthood at 18.

Looking back, I can't believe how much you have changed me. You have taught me patience that I would never have known, you taught me tolerance and acceptance. You have taught me to believe in myself and to trust my instincts. You have taught me how to fight, you have taught me unconditional love, a love that surpasses that of a mother for her child and transcends into something that is completely primal.

You are so very, very precious, and there is not a day that passes that I am not incredibly grateful to have been chosen to be your mother, to have been part of your life, to have been blessed with the specialness that is you... but mostly just to have been on this journey.

This is a journey that has made me cry, brought me so much pain and given me so much hurt... yet looking back, I would not change a single thing.

I am grateful every moment for the perfect blessing that you are.

So, my sweet, perfect Princess...

Now, in celebration of your fourth birthday, I want to tell you this.

I love you. You are my heart, my soul and my light. You bring me joy, you bring me happiness, and you bring me tears. You have changed my life so spectacularly, yet I am continually blessed by you.

I will cherish every moment we have left together. I will love you all the more fiercely because I know our time is limited. I will make you laugh, I will shower you with love, and I will do everything in my power to keep you happy, to see you laugh, to see you smile, to see you enjoying life.

But mostly, I really just promise that I will love you. You are my baby. You are my precious one, you are my little Princess, and I will love you all the more for it.

I hope you enjoyed our shopping trip... I hope you love your new Dora pretties... I hope you loved our lunch together... I hope you loved your crown and your earrings and your cake...

And I promise you this... I promise that there is a lot more love, and happiness to come!