FML

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?

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.

Numb

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.

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...

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.

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.

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!

<3

No More Green Slips.

For the last 10 months, trips to Brisbane for chemo have been relatively straight forward. We go, we see the Oncologist, we get a green slip, we leave.

Well...

We went.

We saw the Oncologist.

We left.

No green slip.

What does that mean?

The green slip is the 'we need to see you again so we will book an appointment in X weeks'.

Nicola has finished her chemo...

There is no appointment to see her again.

And to be honest, the next person that says to me "Oh, you must be so happy to be at this point!" is going to get smacked in the face with the full wrath of a Mumma who hurts like you couldn't believe!

I posted on a facebook group last week that Nicola was facing her last chemo session and I wasn't quite sure how to feel about it... and so many people told me how relieved I must feel, and how I must be so glad to be getting back to normal...

And all it did was make me feel worse than you could possibly believe.

There is no 'back to normal' for us. There is no sense of relief... there is no happiness, there is no celebration or jubiulation. There is nothing, except an overwhelming feeling of hurt.

We have come so far...

We have so far still to go.

We know this was her last chemo session...

We also know that she is not cured. She is not NED (No Evidence of Disease) and she is not in remission. We know that she WILL relapse. We know that when she does, there is very little we can do...

And all of this was confirmed last week when we saw her oncologist for her last chemo appointment.

"You knew from the beginning that the very best we could do was to buy time. From here on out, that time is going to come at a cost."

Those were the words of her Oncologist.

Words that, from here on out, have been forever slammed into my heart.

It's not that this is anything we didn't already know... just, more that we had it confirmed. There was no ambiguity, no uncertainty, no hesitation... just simple facts.

The chemo has not worked as expected.

The radiation has not worked as expected.

She still has a very large tumor in her pelvis.

She still has stage 4 metastasis in her lungs.

Her pain levels are not going to get better.

Her pain levels will probably get worse.

There is a suspicion she is already starting to show progression of disease.

Second line treatment MAY buy us time, but at a heavy price.

Quality of life will decrease as pain increases and second line treatment will make that worse.

From our perspective, it is simple.

From here on out, we focus on quality of life. We focus on her happiness. We do what we can to ensure that she is happy and comfortable.

We focus on making our memories and making the most of every moment we have left.

The simple fact is... from now on...

Every moment is precious.

Another Three...

Wow... we have so much happening here at the moment. Things are just so insanely busy!

Today is Monday... I have one big girl sick... one big girl dealing with a busted lip and the remnants of a concussion... one baby girl teething...

And one precious princess gearing up for her last chemo session.

We fly down Thursday morning and we get to sit down and have some rather frank discussions with her doctors about where we go from here and time frames etc.

We fly home Friday, get off the plane and swing straight back into reality with one gymnastics lesson and one impromptu dancing lesson.

Saturday morning we have a birthday party for a cousin, a Highland dancing competition, and my Dad's 60th birthday party. Sunday we have a date planned to drive down to some special markets in Home Hill with a friend... and then next week is equally insane...

But... more importantly... we have some incredible planning to finish...

See....

There is another three in our lives.

Three weeks.

What happens in three weeks???

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The most precious little Princess is headed to the Happiest Place on Earth!

Our flights are booked and our hotel is arranged. Our Park passes have been purchased and are sitting securely in a safe place!

It feels so surreal... it is something that meant so much to us, but that we never thought we would be able to achieve... it became our ray of hope, our beacon, our light at the end of the tunnel... a tunnel that seemed impossibly long.

There were many many days that we never thought we would get there... and if it wasn't for some very incredibly special people we wouldn't have!

But... three weeks from today we will be winging our way across to 'the other side of the world'!

I feel so completely overwhelmed at the thought of it all, yet so very, very excited that we are going to get this experience, that we get to share it together with all of our children, while we have all of our children.

The next three weeks are going to pass in a flash and there is still so much to organise. Packing, medical paperwork, all the other bits and pieces that we need to finalise...

But it is happening, it is really, really happening...

Another dream is coming true!!!!