Sunday, May 27, 2012

Hoping and Praying... Again??

Tomorrow morning we have a 7.30am admission for Nicola to have her MRI done.

To say I am a little nervous is an understatement.

I feel so tightly wound that I feel like I am ready to explode at the slightest amount of provocation. Add to that some pretty insane insomnia and fatigue and all in all I'm climbing walls and ready to start scratching an escape route.

We seem to have been in this position so many times... continually clinging to the hope that we are going to get a bit of good news, that we will hear something positive, and then continually being kicked back down.

Still, tonight we are holding fast to hope. We are not hoping for improvement, we are simply hoping that we are holding ground.

Holding ground is by far preferable to the alternative.

So tomorrow she has her scan and we will hopefully be able to get the results on Wednesday, in time to fly to Brisbane on Thursday morning for chemo and some very blunt conversations with her doctors about what is happening and what is likely to be happening.

I think at the moment the worst thing with this whole journey is the constant uncertainty. We just never quite know what is happening or when, we're following blindly behind a piper we can't really see and can only kind of hear, yet we still follow on because there is simply no alternative... we follow uncertainly, with faltering footsteps, testing the path each step of the way, constantly waiting for the ground to fall out from beneath our feet.

I don't handle uncertainty well. I like to be prepared, to know what will happen and when, to be able to plan accordingly for every contingency that arises.

Instead of planning, we are hoping and dreaming...

But, I have to admit, we are also having some fun.

We are slowly but surely learning to throw caution to the wind and enjoy each day for the precious gift that it is.

We are stopping to play in the park, going to the beach and dancing in the rain.

Well, we were until this cold snap hit! Now it's more snuggling under blankets, sipping hot chocolate and enjoying the warmth of snuggly cuddles!

Tomorrow though we are temporarily back to waiting, hoping that we get answers, that we get them quickly, and that for once, they are at least a little bit favourable.

So, tonight... I feel like I have to ask once more...

Please keep our little girl in your thoughts. If you believe in a higher being, please ask for divine intervention, anything that will give us just a little bit of hope moving forward.

Wednesday, May 23, 2012

Reaching Out With Love

Ok...  so I have now sat here for the better part of 25 minutes staring at a blank screen, trying to formulate the words to express the thoughts that are rushing through my mind, but honestly, words seem to fail me.

Tonight I have been humbled by the kindness of strangers and blessed by the support of a community, yet at the same time, I can't help but feel ever so slightly saddened by the circumstances that have brought all of this to a front.

You see, 12 months ago we started making plans for a big family trip to Disneyland.  There was a Costello Syndrome family conference slated for late July in Florida, and we wanted to attend. We were also acutely aware of two other facts... one being that it would likely be the last international trip we would be doing for quite some time, the other being that in the last 3.5 years we have often been forced to sacrifice the emotional well being of our other children for Nicola's needs, so we were going to make it a great big all in family holiday.

Then Nicola got diagnosed with cancer.

The day after she had the first scan that found the tumor she had to have an MRI and a CT scan and that was when they found the metastasis in her lungs.  It was a moment that I have never forgotten because for the first time ever my husband fall apart.  He cried, the heart rending sobs of a man who's very being had been shattered.  

We were sitting in the room, holding each other, reeling from the shock of everything, and he said to me "This can't be happening, not now.  We have plans to go to Disneyland and I'll be damned if I let this get in our way!"

I think it was at that point that we made the decision that the trip was going to happen, we were going to get our girls to Disneyland, they were going to have lunch with the Princesses...  ALL of them!  

It became our reward, our light at the end of the tunnel.  It was no longer about the conference, just the trip.  It was two years away which meant that we had plenty of time.  Nicola would finish her chemotherapy, she would have her radiation, she would have the surgery to remove the cancer and she would be declared NED (No Evidence of Disease) and then we would go, we would celebrate, it would be our trip of a lifetime, but we would be celebrating something that deserved to be celebrated in style.

Then it all changed...  and we realized that we would not get that celebration.  We would not be given the chance to see our child NED...  and our emotional need to take the trip escalated even more.  

All of a sudden we were no longer wanting to go to celebrate, we were just wanting to be able to go, to have that last huge huzzah with all four of our children together, while we still have them together.  The trip of a life time...  the trip of Nicola's life time.

It was during Nicola's last trip to Brisbane for chemotherapy that the possibility of international travel was first raised with the Oncologists, who were very supportive of what we were wanting to do...  but they recommended that we don't delay because Nicola's future is so uncertain.

We need to do what we want to do now, make memories and focus on the moment. 

It was a few weeks ago that I was talking to one of the other mothers at my daughter's school during a Mother's Day event.  I had to explain about how Nicola's treatment was so far not working and that her overall prognosis was now not good...  Feeling rather miserable, fuelled by the fact that I couldn't help but think that I would never share a school Mother's Day event with Nicola, I explained that we were just trying to do what we could, that we were focusing on happy memories and making every moment count...  and that our biggest wish was likely to go unfulfilled because we just didn't have the funds to make it happen.

We were planning the 'beg, borrow, steal' path but even still, our chances were pretty slim... 

Then last week, something kind of overwhelming happened.  The same mother, who is also a teacher at my Daughter's school (her daughter shares a class with my oldest girl) told me that her students were so touched and saddened by Nicola's story that they wanted to help.

And so the Reach Out With Love campaign was started within the school who has now started engaging the wider community.

I feel so humbled that a group of people who know nothing about us have been so deeply touched by my daughter that they want to help...  but beyond that, I feel so very blessed that I am part of such a community that is so kind and caring that they want to 'reach out with love' to the people that need it.

I also feel proud that my beautiful little Princess has touched the hearts of so many people.  In some small way, that helps to make up a little for everything she is being forced to endure.  Not much, not much at all...  but just a little. 

Monday, May 21, 2012

To Me...

Over the past week or so I have slowly withdrawn from almost every 'Special Needs' support group that I am part of.  There are lots of reasons for this...  but mostly at the moment I find that it's because I just don't seem to do well in a group environment.

I am getting so very very fed up with people who have opinions.  Sadly, everyone has one...  and even sadder is the fact that almost no one will keep theirs to themselves.

Cancer is such a horribly, ugly, common disease and there are very few people who remain untouched by it's grasp...  yet it is something that affects everyone so very very differently.  No two journeys are the same...  

To me...  it's hell.

To me...  it means missing out on seeing family and friends because she is neutropenic and can't be around other people for fear catching a bug that will land her in hospital.

To me...  it means never having a night off, no date night with my husband, no coffee with my friends, no break, at all.  I am here 24/7.  

To me...  it means watching my beautiful little girl suffer in ways that no child should ever have to suffer.  Dosing her with copious and ever increasing amounts of drugs just to try and get her through every day as comfortably as possible.

To me...  it means sitting through hours of chemotherapy, blood tests and follow up appointments every week just to try and get a little bit of a break.

To me...  it means seeing her little body waste away, her cute little chubby cheeks vanish, her cheeky smile fade into a face that is drawn and sunken with pain.

To me...  it means feeling sick with absolute fear and dread for a week before every re-stage/re-scan/re-evaluation that we will be handed yet more bad news.

To me...  it means smiling on the outside when inside I just want to curl up and cry.  Pretending that I am strong and everything is just fine, when really I'm dying with fear and feeling utterly terrified... acting like I don't feel totally alone.

To me...  it means prioritizing my money every week, making sure that first and foremost her medications are paid for, followed by her other expenses, like trips for chemo, then other bills and essential costs...  trying to make a small amount of money stretch a long way.

To me...  it means that little moment of hope every week when I check my bank account balance and find myself hoping that this week there will be a bank error in our favour and we will get to collect the $200!

To me...  it means praying I can keep the stupid battery in the car going for another two weeks before having to pay for a new one...  or that the fuel gauge will be kind for just two more days so I can make it to the end of the week.

To me...  it means sacrificing the things I want in order to provide a little bit of happiness for my children, because God knows, they deserve it.

To me... it means not being able to walk into her bedroom first thing in the morning for fear of what I may find.

To me...  it means waking up every morning trying to find the strength, courage and determination just to fight on for another day.

To me...  it means spending every day fighting to keep her alive, but in the depths of my heart knowing that one day in the future I am going to have to stop that fight.

To me...  it means knowing that the day I stop that fight I have to explain to my other children, to my family, to my friends, that we have failed, we cannot win this fight.

And I think that is what bothers me the most.  The fact that the odds are stacked so insurmountably in our favour, we are waging war on something that is bigger, badder and stronger than us.  

We have fought so long and so hard for everything we have gotten through with her.  We have battled through wars that seemed so incredibly impossible...  but none have been like this.  

None have left me with this echoing feeling of desolate despair in my heart.  None have left me feeling so totally, utterly and completely afraid of losing her.  

Every time the doctors were negative, I knew better, I knew she would come through, I knew she would be ok.  Every time the doctors told me that she wouldn't or couldn't do something, I knew she could prove them wrong.  I knew in my heart that my daughter was strong, she was stronger than they believed...  but now I see that strength wavering.

It seems to surreal that we have fought so long and so hard, we have kept her alive through so much, only to have to fight yet again.

And this is where those 'opinions' come into play.  

The most recent pearler of which is that I just haven't done enough.  I could cure her if I wanted to.

All I need to do is to feed her some particular fruit from some particular shrub in a particular area of North Queensland...  and apparently the specific compounds within this fruit will just liquify her cancer and she will be cured within 24 hours.

Don't believe it?

How about...  would you like some kerosene with that??

No, seriously...  All I need to do is give her 20 drops of kerosene a day that has been filtered three times through cotton wool and the cancer will just go away.

So many people have opinions on what I should do, on how I should treat her, on what path we should take...

Yet none of them are facing losing their child.  

I am.

None of them are the ones who are facing these decisions.

I am.

I am the one that lays awake at night, sick with dread, over what the future will hold.

I am the one that goes through night and day feeling like a failure because I can't protect my children.

You might have an opinion on what this is supposed to mean to me, how I am supposed to handle it or what I am supposed to do or say next...  

But when all is said and done, I am the one that will be left picking up the pieces.

Friday, May 18, 2012

Patience is NOT a Virtue!

You know, I hate waiting.

About 6 months ago a friend sent me an awesome little graphic and it said "Why must patience be a virtue?  Why can't hurry the f*** up be a virtue?"

And it is so the story of my being!  I am NOT a patient person!

I have never been good at sitting around twiddling my thumbs and waiting on someone else to make decisions, I much prefer to just decide and get on with things.

I hate waiting around for answers...  and more than that, I hate waiting for results.

In the last 4 years, since shortly before Nicola's birth, I have done a lot of waiting.  I have been waiting on other people, waiting for answers, waiting for results, waiting for SOMETHING...  I have done so much waiting I have lost track of the hours I have spent whiling away in waiting rooms, waiting for phone calls, waiting for times and dates, waiting for answers...

But none more so than in the last 6 months.  I think all I have done in the last 6 months is wait.  

I keep waiting and waiting...  but it seems that the more I wait, the less I like what I hear...  and each wait is growing successively agonizing...  

And now, here, tonight, I am waiting again...

Waiting for next week...  for a teleconference that will be set up at 'some time' to allow us to talk to Nicola's doctors in Brisbane without actually having to fly down there...  so hopefully they can make a decision about how we proceed and what we do next.

For the last 10 days or so we have seen a noticeable decline in Nicola's well being.  In general her health seems to be going backward.  Her hemoglobin levels are not remaining high for anywhere near as long as they had previously, she had her last transfusion 4 weeks ago and needs another one again now already...  she is neutropenic for the first time in six months and she seems to be wanting to sleep a lot. 

But beyond that, her tummy is very swollen and distended again, and there is a soft protrusion around the area of her pelvis, about where the tumor is suspected to be.  Her pain levels have deteriorated significantly and even an increase in her pain medications has only seen a slight improvement in her happiness...  and her comfort levels have significantly decreased.

The concern?

That her tumor is growing, despite still being on treatment.

While we are trying so hard to be positive, it is proving to be incredibly difficult.  While my heart is screaming at me that everything will be OK, there is that tiny little voice in the back of my mind screaming that it's all bad...  we haven't had much luck so far in this journey, we seem to be coping one shocking blow after another, so I don't know that I really truly expect this one to be much different.

It is starting to feel like for every little tip toe forward we take, we are sent on a flying leap backward.  

I feel lost.

I feel confused.

I feel so very, very hurt...  

I don't understand why this is happening.

I don't understand why a beautiful, sweet, innocent little girl who has already suffered so much in her little life has to continue to suffer like this.

I feel so very, very angry that this is happening at all!

I really, really just don't understand...  and I don't like it.

I want to go to bed, to go to sleep, to actually get some real sleep, and wake up to find that the last 7 months have been a long, horrible dream and everything is back to the way it was... 

Instead I am sitting here, trying to juggle a thousand emotions and thoughts and make sense of a reality that seems to be crumbling into a horrid mess at a rate that is so much faster than we had ever thought would be possible.

We are trying so hard to hope for the best... but it seems to be getting harder and harder with every passing day.

Thursday, May 10, 2012

And So I Write...

Someone asked me recently why it is that I usually only blog when I have sadness to talk about.

I guess the main reason is because I blog as a way to release my emotions.  

I only have a couple of real life friends who I can talk to, and none of them are really 'local' so most of our conversations are via phone, Facebook or email.  

I can't really talk to my family, not properly.  A lot of the time I feel the need to shield them from the reality that is our life, so they tend to get a readers digest version of everything that is going on.

My husband is wonderful, he has become so supportive and is generally right there with a hug when I am down, but even still, there are a lot of things that we don't really 'talk' about.  I think there is this void between us where a lot of unsaid thoughts and feelings kind of disappear to.  They drift into this void, and even though really we both know what the other is thinking and kind of understand the feelings, it remains unsaid for fear that vocalising it will make it really real...  once something is said, it's out in the open and it can't be taken back.

So other than that...  I blog.

For the Harry Potter fans among us, this blog is basically my pensieve.  I take thoughts and emotions from my mind, I process them and I try to deal with them by writing them down...  so I can go back later and reflect upon them.

Why I share them with the rest of the world...  well...  I guess I don't really know. I am not really sure how far Nicola's story has spread or how many lives, apart from ours, that she has touched...  but I guess I just don't want to keep her story to myself.  I want to share my beautiful girl with the world...  and I guess it's comforting in some way to know that 'someone' is 'listening'...  even if I don't know them, can't see or touch them, just to know that there is someone that cares enough to take the time to read what I write.  Whether it be for me or for Nicola...  'someone' is there.

Most of the time, living this life is very isolating.  I spend a lot of time feeling very much alone.  We just don't seem to slot into any little box.  Unlike most children with additional needs, Nicola has a mix of physical, medical and behavioral issues to contend with. Unlike most children with additional needs, Nicola now has the added complication of cancer.  Unlike most children with cancer, Nicola has the added complication of a life time of incredibly complex additional needs.

We seem to have ended up chivied off to the side into this little niche all by ourselves...  and it's a very lonely place to be...  

Most of my 'life' gets sacrificed in the names of my children...  I can't remember the last time I went to the hairdresser, my nails look wretched, I haven't bought new clothes in eons, my make up is so underused that my mascara expired before I even removed the plastic wrapper!  The last time my husband and I went out for dinner or to the movies or had any kind of alone couple time was so long ago it was before we even moved back to Townsville and we've been here for over two years...  we basically give up our own luxuries to ensure that our children have what they need to keep them going...  so without everything else, all I have left is my thoughts...  

And so I write.

I have dozens and dozens of posts that remain unpublished and most likely always will remain unpublished, but for the most part, this is my outlet, my release.

I try to write as often as I can...  but mostly I write because thoughts have been built up so much that I need to clear some out...

And so I write. 


Thursday, May 3, 2012

Broken Hearted

I have just spent forever sitting here, staring at a blank white screen, trying to work out what I could write... 

How do I take all of these thoughts and emotions that are rampaging through my head and try to put them down in a way that they are understandable by other people... 

And I guess... I guess really I just need to write. 

 Do you realise that we have been on this journey for 6 months? 

 That's, like, half a year! 

Just over 6 months ago my life was normal, and then it all changed. 

We discovered that our beautiful baby girl had cancer. 

 Three months ago I sat here and I cried as I wrote that the first three months of chemo had been unsuccessful. 

All our hopes were pinned on a six week long intense radiation program that was supposed to light our way to a brighter future. 

Monday Nicola had her MRI and CT scan. Today we got the results. 

The radiation failed. 

The scans show virtually no response in either the primary tumor or the metastasis in her lungs. 6 months after we started this journey, we are still where we were when we started. 

We have not gained any ground. 

 We have not lost, but we have not gained. 

 Today we had a frank discussion with our daughter's oncologist. 

 She has 12 weeks of chemotherapy left in this cycle at which point we stop. 

There is a chance that the masses that are being seen on the scans are dead tissue, but her oncologist believes that there is an 80% chance that once we stop chemotherapy the cancer will start growing again. 

So this is what we have to look forward to. 

In 12 weeks we stop the only drugs that seem to be doing anything to keep this cancer at bay. 

We start a series of scans to monitor the progress of the masses that are spread so profusely amongst her abdomen and lungs. 

At the first sign that there is new growth, which they are anticipating we will most likely see within 6 - 8 weeks at most, we need to stop and consider what we do next, if we do anything at all. 

There is the very very real (and most likely) possibility that this cancer that is attacking my beautiful precious daughter is untreatable. 

There is the very real possibility that in a little over 12 weeks, we will have to make the decision as to whether or not we continue treatment of any sort or we let this demon take it's course... 

There is the very real possibility that they are going to come back to us and ask us to decide what, if anything, happens next. 

How do I make those decisions? 

I know I still have 12 weeks to go, but given that everything so far has been so totally unsuccessful, I can't help but feel like we are just taking steps closer, day by day, to the hardest decisions that I will ever have to make as a parent. 

How do I deal with this? 

I have gotten through the last 6 months by getting up every morning and smiling. As long as I smile everyone else thinks I'm ok, and that has been just fine... but it's getting harder and harder to smile... in fact, tonight I don't seem to be able to do much more than just cry. 

There is so much I want to say, so many emotions I want to get out, so many thoughts that are fighting for air time... but I keep coming back to my Princess Nicola... 

My baby... 

My beautiful, precious princess... 

and I cry... 

because life is just too unfair.