Unanswered Prayers

14 weeks ago tonight I sat here and wrote with tears in my eyes as I shared with the world that there was no doubt, my beautiful precious girl had cancer, an announcement that started the roller coaster ride that has become our life.

Since then we have endured one agonizing week of waiting, twelve weeks of intensive chemotherapy and another week of agonizing waiting...

We have hoped hundreds of hopes, prayed thousands of prayers and cried millions of tears...

We have thrown our lives around, watched our other children buffeted by the after shock tsunami's of Nicola's earthquake, and tried to hold on as our feet have been swept out from under us...

All the time we have held fast to the desperate hope that today would bring positive change... today would make it all ok. Today would give us the hope that we needed to keep going through this journey.

To be honest, we've psyched ourselves up a lot. We've watched the way Nicola has handled everything, her superstar performances, the amazement in her doctors every time her bloods came back, her beautiful smile that has managed to shine through almost every single day, and we've assumed that her first restaging was going to bring reassuring wonderful news of an amazing improvement in her cancer.

Well, today has come... and it did not bring us reassurance, it did not bring us comfort, and it did not bring us hope.

The positive is that the cancer has not visibly progressed.

The negative is that there has not been the amazing improvement we had hoped for... in fact, there has been very limited improvement.

The tumor has had limited shrinkage.

The cancer is still prolific through her abdominal region.

The metastasis is still severely impacting on her lungs.

12 weeks of intense chemotherapy and there has been limited change.

To say I am gutted is an understatement.

I feel shocked, I don't want to believe it, I don't want to think it's possible, but I know it is.

So what comes next?

Surgery is absolutely and completely not an option.

Monday we turn our lives inside out and upside down so Nicola and I can fly to Brisbane for her to start 6 weeks of intensive radiation therapy. We have to cross her fingers that her little airways can cope with the stress and pressure of the repeated anesthetics and pray that in 12 weeks we find something to give us a little hope.

I know I should be hopeful, I know I should just believe that everything will be ok and that she will come through this, and God knows, if the power of prayer has anything to do with it she will soldier through without a backward glance...

But I find it hard to cling to something I can't see. I don't like groping blindly in the dark hoping and praying that sooner or later my fingers will just happen to grab hold of a life preserver...

I can see little glimmers, but I'm still desperately waiting for the beacon of hope that is supposed to come.

Who knows, maybe in 12 weeks we will find something... but tonight, the world is just a very cruel, dark and miserable place.

Until Tomorrow....

14 weeks ago I sat here, at my computer, and I stared for a long time while I tried to work out how to ask for help, how to ask my friends and family to pray for my baby girl as we faced the most difficult path we had ever traveled, a diagnosis of cancer.

Now I find myself in much the same position.

On Tuesday Nicola had an MRI to restage her cancer.

Tomorrow we get the results.

To say that I am scared is an understatement. I am totally, utterly and completely terrified.

I am so afraid that they will tell me that the chemo hasn't worked or that the tumor hasn't responded or that we have no more options.

I know it probably sounds silly to think these thoughts, especially when we have not been officially given the results yet, but there are a few things that I do know.

1. Healthy children with a stage 4 Embryonal Rhabdomyosarcoma have less than a 20% five year survival rate.

2. Even with all treatment options available today, metastasized cancer is rarely curable.

3. Children with Costello Syndrome and childhood cancer are more likely to die than survive.

I feel positively anxious about what is going to be said. I keep going through making lists of what I need to ask the oncologist when I speak to him, but then I get to a point and the questions just all seem to hard, and deep down I don't really want to know the answers at all. I still want this all to just be a bad dream and I'm going to wake up one day soon and it will never have happened and my baby will be ok.

I have spent most of the day walking around in a total funk. We got home last night.

She had her radiation planning yesterday, and when I was sitting in the waiting room waiting for her, I looked around and it occurred to me that everyone else that was there for treatment was old. (It was at the adults hospital)

I can't explain it, but it really just struck me that Nicola didn't deserve to be there. None of them did, no one deserves a diagnosis of cancer, but to see my beautiful, precious little three year old daughter in amongst all the much, much, much older people there for treatment, it just seemed to very very wrong.

But, regardless of how wrong it feels, it is happening, and it is happening at an alarming rate. Having flown home last night, we have until Monday morning to organise everything for us to fly back down to Brisbane again for her to start radiation therapy.

To be honest, I'm not sure which is going to be worse... seeing my baby suffer through 6 weeks of daily anesthetics and radiation therapy, or being away from the rest of my family for so long.

We had briefly contemplated tag teaming so we could take turns at being down there and up here, to break up and make it a bit easier, but the cost of the flights alone are so prohibitive that it makes it impossible for us to even truly consider, especially on top of everything else.

But I guess at the end of the day we do what we have to do, and if that means I have to be away from my beautiful children and my husband for the better part of two months to give Nicola any kind of chance at beating this, then I have to do it, there is absolutely no doubt at all about that.

But, until tomorrow it is all irrelevant. Until tomorrow we don't know for sure what will be happening or what next week will hold, we won't know anything...

All we can to is wait...

Until tomorrow.

Strength.

Strength:

noun \ˈstreŋ(k)th, ˈstren(t)th\

1: The quality or state of being strong


Strong:

adj \ˈstrȯŋ\

2: Having moral or intellectual power
13: Not easily upset

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"Look how strong you are?"

"You are stronger than you think!"

"You're strong enough to cope with anything."

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There seems to be this general understanding between everyone else that I have this unending source of strength, that I am so strong and I can get through anything.

I really don't know where these ideas come from, I guess the only thing I can think is that these people don't really know me... they don't see the day to day stuff... so because I haven't collapsed into a screaming heap and gone to hide in a dark corner, rocking back and forth while swigging from the nearest bottle, that I have some tremendous source of strength, that I am indomitable.

I guess the other thing is that I have fought since Nicola was born. I have fought for her rights, I have fought for her care, I have fought for her services... but really, she is the one that has fought for her life.

Everyone keeps asking me how I'm coping, how I'm dealing with everything, and no matter what I reply with, there is the assumption that I am strong.

I am not strong.

I am a human. I am flawed, I am weak and I am deeply emotional.

I think the people who assume that I am strong don't see the 4 or more showers I take a day because with my head under the water no one can see my tears. I think the people who assume that I am strong aren't with me when I suddenly find myself faced with the fear that my future may not hold my child. I think the people who assume that I am strong see a facade, they don't see when my knees buckle and my heart breaks and the world just becomes too much and I don't want to do it any more.

Instead, they see when I pick myself up and force myself to smile and keep on going. They see me close my eyes and take a deep breath and take another step forward.

They see me laugh when I really want to cry, they see me keep going when I want to fall in a heap... and they think I am strong.

But I'm not...

And I guess that's alright.

Someone Else...

You know those things that happen in life that happen to other people? Those awful, heartbreaking, gut wrenching things that just leave you feeling utterly lost and confused and wondering why it could possibly happen???

Those things that you never have to worry about, because they only happen to other people...

Well, those things seem to be happening a lot in my life lately.

I can't really explain it, but for some reason I guess I just had thought that with everything we have been dealing with with Nicola that the rest of my family would not have to suffer... after all, how much hurt and heartache can one family endure???

So last night I left my 3 year old daughter having her chemotherapy in Brisbane (with her Daddy, not alone!) so I could hold my sister's hand as she brought her precious baby boy into the world...

A baby who has been so loved and cherish, so longed for... a baby boy who was desperately wanted...

A baby boy who we were told two days ago had passed away in utero from unknown causes.

I can't explain how I feel except to say I am numb. I really, truly, genuinely believed that I would be the first, and only, in my family to bury a child... that my sister would be spared the heartache of loss... and this is just so senseless, so very meaningless.

If it were Nicola that had passed, at least it would be somewhat expected. She is a sick child, she has been unwell and medically fragile her entire life. She has cancer, she is battling odds higher than the tallest mountain... but this little boy, he didn't even have a chance to make it into the world.

He never drew a breath or smiled a smile... he never cried or laughed... but he is oh so very, very loved... and oh so very, very perfect.

This afternoon I stood and watched as this precious little boy was blessed by the Priest, and even though his words were meant to be comforting and reassuring, I found myself standing there thinking that I was right two days ago.

God is nothing but a vindictive prick who gets his kicks out of the misery and suffering of the many.

I know that I am supposed to hold fast to my beliefs, I am supposed to believe there is a reason behind everything and one day that reason will become clear...

But what possible reason is there for this to happen?

What reason is there to continually make a little girl suffer more and more??

What reason is there to take a much loved and wanted first born child from a mother and father who desperately wanted him and did everything right?

How is it fair that there are women out there who smoke, drink and do drugs through their entire pregnancy and give birth to normal, healthy babies, yet mothers like my sister, or even myself, who don't drink, don't do drugs, don't smoke and don't do anything wrong end up being penalized?

I know that there is so much more to it than that, but there shouldn't be. It should be simple. Good people should not have to deal with bad things. Good people should be blessed with happiness, not pain and heartache and suffering.

I guess today I am just feeling raw and emotional and so very very hurt and angry at the world in general...

But the world doesn't care...

The world still keeps turning...

clocks keep ticking...

people keep moving about, doing their own thing... completely oblivious.

Oblivious to the anger...

Oblivious to the pain...

Oblivious to the heartache...

After all...

Things like this don't happen to normal people...

They happen to 'someone else'.

2012 - A New Year.

Well.. we are three days into the new year, and so far, I must say, I'm not really all that impressed.

New Years Day Nicola was so unsettled and miserable that none of us got any sleep. Her breathing is just absolutely awful at the moment, so much so that people coming to my house generally get quite shocked when they hear her. She sounds like she is constantly struggling to breath, her stridor is awful!

The leading theory is that she has vocal cord paralysis from one of the chemo drugs, which is affecting her breathing, her swallowing and her voice.

Her pain is finally under control, or at least, we think so. She still has some moments where she is really unsettled but they are fewer and further between now... but, then again she is on enough drugs to knock an elephant on it's backside, so I'm not really all that surprised.

It's hard to believe that we are now two months into our journey. We are very nearly at the first restage. On the 30th we fly to Brisbane for the MRI to be done to tell us what is happening with the tumor and if the chemo is working.

Looking back, I suspected the tumor before anyone else. I read too much into something her pediatrician said and I went home with the sinking feeling that they were going to find a tumor... and it turned out I was right... but that premonition or whatever it was gave me time to dwell on the news before it was even given to us, a chance to gather some strength before we were thrown into chaos, and I think that was partly what got me through, the fact that I wasn't totally taken by surprise...

But now, in the lead up to her first restage, I have this sickening feeling that they are going to tell me that the chemo isn't as effective as they had hoped. I so want to be wrong, I really do... but I just have this sinking sickening feeling that they are going to deliver another devastating blow and I'm not sure I'm up to it.

In the past three years I've gotten pretty good at hiding my emotions. I've become very adept at hiding what's really going on... put on a brave face, smile and pretend that everything is ok, but over the last two months it's gotten harder and harder.

I keep having what my husband calls 'moments'.

I will be doing something completely mundane and normal and all of a sudden these thoughts will creep into my mind, and I will find myself wondering about the future... and all the things that she may not get to do, and that thought just hurts so much.

Since she was born I've mourned the loss of such a huge portion of her life... but it was never like this. This is like a great big black cloud that just hovers over me, and at the most random of moments lightening will strike and the storm starts to rumble and it's so hard to not just fall to pieces.

There is so much happening it's hard to know what to think and how to feel, it's hard to find a way to balance everything and keep it all in check, but we will have to.

Not for ourselves, not even for our other children, but for Nicola. If she has the strength to keep going, we can't give up.

This is 2012... this is a new start, a new year...

This is Nicola's year.

Dear 2011

Dear 2011,

I am so very glad to see the end of you. I am glad that you are finally over. You are a year that has just dragged and dragged and gone from bad to worse to utterly horrific.

At the start of this year we sat down with our therapists and wrote our goals for the year. They weren't extensive, but they were the goals that we had been working on, and this year was supposed to be our year.

We saw progress, we saw incremental gains and improvements, we saw her finally start enjoying her therapy and being able to disassociate from the medical extremes and focus on the enjoyment that came from the little bits that we saw...

But no, you couldn't just give us that could you? You had to toy with our minds a bit, play a few little games... and f*** with our emotions.

First the subdural hematoma, then the surgery for her tonsils and adnoids... the behavioural problems, the underlaying pain management that we've never been able to control, the feeding issues, the breathing issues, the neuro issues... then when we finally thought we were good to go, we were given the news that her heart was getting worse.

Given the extensive nature of her heart problems we had thought that that was going to be the worst thing that we were dealing with, everything else was getting better... but no...

Then you had to go and deliver one last blow didn't you... you couldn't just disappear silently and let us move on and deal with everything else, you had to go just that one step further...

Cancer... You had to deliver the most final blow you could... you gave my daughter cancer.

I have gone through so many emotions this year, I have been up and down, I have been twisted around, I have been turned inside out, and I am still standing... I don't know how, I don't know why, but I'm still standing... And now it's over.

You're gone, over, finished... you will NEVER return again...

So, 2011... I have two words for you.

F*** YOU!

Sincerely,
Me.

Merry Christmas

The show must go on...

Or so I have told myself a bazillion times over the last few days.

Christmas is such a bittersweet time. There is all the usual joy that we get at Christmas time, the joy of being with friends and family, good food, good drinks, good presents, and just generally a really good time...

But it sucks... it sucks so very very much and it hurts in ways that I cannot even begin to explain, and the presents and the family are the worst parts!

The presents... well, like I said in my last post, there is the horror of trying to buy something that doesn't come from the baby section but is developmentally appropriate for our developmentally delayed child and knowing that you looked at all those same toys this time 12 months ago.

Beyond that, there is the family aspect... I have a nephew who is only a few months older than Nicola, and every year we buy gifts for him and every year he develops and he grows and he moves through milestones and we buy suitable gifts, smiling and trying to be happy and ignore the hurt that our child isn't doing that.

I don't begrudge my brother and sister in law their 'normal' child, not at all. I love him dearly, I love them all dearly, but sometimes it just really hurts that something that is so mundane has been snatched away from me and I just can't get it back again.

Now, add to that the additional pressure that this year had to be extra perfect because I have this nagging little voice in the depths of my mind who keeps trying to rain on my parade... and no matter how hopeful and positive I am, this little voice grounds me and tells me that this may be our last Christmas together as a family.

My daughter has cancer.

My daughter has a rare and aggressive cancer that has spread widely through her tiny body.

I look at it, and I can't see it, but I can see the affects that it is having on her, and I hate it, but it also makes me more determined to make the most of every minute.

So, naturally, seeing as how I wanted this Christmas to be the most spectacular Christmas we have ever celebrated, I ended up as sick as a dog and have spent the last week on the couch, huddled under a mass of blankets and watching kids tv because I couldn't find the energy to get up and turn it away from Dora the Explorer.

Yesterday I emerged from my hidey hole in my blankets long enough to tell my family that if they wanted anything more than what was already in my pantry or my fridge (which pretty much meant olives, gherkins, an abundant supply of chips, mixed nuts... well, you get my drift) then they were on their own.

So our Christmas was far from the splendid sumptuous feast that I had anticipated... we didn't bake in preparation, we didn't decorate every inch of the lounge, we didn't sing Christmas Carols until the old scrooge next door complained... we didn't do anything I had wanted to do...

But we had a good day.

We had the love of family and friend, we were all together, and we had a good day. Thanks to my Father in Law, the girls 'Santa Claus Wish List' was fulfilled... they spent the day eating chips, lollies, icy poles and junk that they would never normally eat, and they had a ball doing it.

Nicola spent most of the day sleeping. Things seem to be really taking it all out of her at the moment. She is having a bad reaction to some of the chemo drugs and has developed some respiratory distress. Her pain seems to be finally under control as they have increased her pain relief in a huge way, but her anxiety is escalating out of control because of the increased level of medical intervention we are dealing with. And just because today she decided she needed a bit of extra attention, she woke from her midday nap with a massive allergic reaction to something and her face was all puffy and swollen and covered in a big blotchy rash.

It wasn't the grandiose day that I had anticipated, but even with misadventures, illness and random issues, it was still a great day...

And now it is over.

All four little princesses are tucked up in their beds, snuggling into new presents, and dreaming of their joyous day...

And I resume my vigil, watching. Watching her move, watching her breathe, watching her sleep.

I hope you have all had a wonderful Christmas, hopefully a lot more straight forward than ours... I hope that Santa was kind to each and every one of you, and I hope that our Christmas' have been filled with love and laughter.

Merry Christmas to all... and to all, Goodnight!