Princess Nicola

50400 minutes...

2012-02-10T17:34:00.002+10:00

So we have finished our first week of radiation therapy... four days down... 5 weeks to go.

5 weeks...

35 days...

840 hours...

50400 minutes...

I am soooooo not going to make it through this journey with my sanity intact!

At the end of week 1 I have had less than 10 hours sleep in total, Nicola's anxiety has escalated out of control. She seems to be trying desperately to cling to any semblance of routine that she can get, so she has determined that nurses doing her obs have to do it in the correct order. O2 Sats first, then blood pressure on the left leg, then temperature, in both ears, first left then right. If they try to deviate from that routine, heaven help them, as we all discovered today!

Thankfully a quick consultation with the consultant has seen an increase in her anti-anxiety medications and I am hoping against hope that she starts to relax a little.

It's hard for her though. She is so routine driven, so attached to 'her' life and 'her' ways of doing things that she doesn't cope well when any part of that is changed, and here we haven't just changed a little part of it, we've just shattered her entire world dynamic.

We have taken away her home, her bed, her belongings, her routine, her Squeaky, her sisters and her Daddy... and she is so very aware of everything that is gone!

Last night she cried in her sleep until close to 1am. It wasn't a loud, sobbing kind of cry, but the quiet little whimpers. About 1.45am she woke up and decided she wanted her Squeaky sister, and then it started. 5 hours of tantrums, melt downs and screaming fits because she wanted everything that was hers and Mummy just couldn't produce it.

I just hope that we get new accommodation soon, for her sake. At least giving her back her Daddy and her sisters will give her back some sense of normalcy!

So, anyway, we're back to the end of her first week of radiation.

I think so far, physically she seems to be handling it pretty well. There has been a marked increase in her saliva production which is caused by the repeated GA's and her stridor has gotten a little worse, when she actually sleeps... but all in all, she seems to be doing ok, or at least so I thought.

The Anesthetist that had her today was concerned because he doesn't think her airways are going to hold up to the pressure of the repeat anesthetics, and he wants an action plan put in place before she starts treatment next week as to what will happen 'when' her airways fail during a procedure.

But, other than that, we have the weekend to ourselves. Well, at least, Nicola has the weekend to herself, I just have to fit in with her plans... but I'm hoping tomorrow morning will bring some time away from the hospital grounds, maybe a trip into the city because it's easy to get to from here, and a spot of shopping. Anything that is semi normal and not revolving around the chaos that we have had here for the last 5 days.

I would really really like a little sleep, but I'm not too sure that will happen!

But I guess it doesn't hurt to hope, right??

Sleep Finished.

2012-02-09T17:53:00.002+10:00

I know that I often see a lot more potential in my child than other people. I consider her to be incredibly smart. Even if her abilities have been doubted. They see a little girl who cannot walk or talk, I see a miracle who needs no words.

But every now and then she pulls something out of her hat that truly surprises even me.

A couple of weeks ago she was watching Dora the Explorer with her Squeaky Sister and when they started singing the alphabet song (A, B, C, D, E, F, G) she was doing the hand signs for Twinkle Twinkle Little Star.

If you have no idea why that's clever, sing the two of them and maybe you'll figure it out! ;)

Today though, today was priceless. This morning, sitting in the Day Procedure Ward waiting to go for her radiation, she tried to use applied logic and reasoning on me!

Now, this is a child who cannot talk, and who, because of severe muscle contractures and spasticity in her limbs, uses very limited signs and noises to communicate with the outside world.

She was signing to me to tell me that she was hungry. Two signs, one for time, one for food. The meaning was simple, it was time for food.

Because she was being fasted for her anesthetic, I couldn't feed her, so I was trying to explain that she couldn't eat yet, she had to wait until after her radiation, after we did our big walk to the other hospital.

Every time I tried to explain something to her, she would just shake her head and make her sound for no.

Finally, she held her hand up telling me to stop, so I stopped and asked her what was wrong. She signed to me, 'sleep'.

I said "Sleep? No, Sleep is finished Nicola."

She made her sound for yes and nodded her head, then she signed 'sleep' followed by 'finished'.

"Yes, sleep is finished."

She again signs 'sleep' and 'finished', followed this time by 'time' and 'food'.

Her logic was really very simple to understand.

Sleep is finished, now it is time for food.

She is getting to be more and more aware of her surroundings of what is going on, but she still has massive trust issues with medical staff. When it's time for her to have her obs done, she will allow me to do them, she will even turn them into some kind of a game, but she will not let the nurses touch her. There are a few exceptions to that rule, but in general she just has massive trust problems with the medical staff.

She seems to be finding it emotionally very difficult to be down here, and to be separated from the rest of her family, or at least, from the most important part of her family, her Squeaky Sister.

Last night she cried and fussed until 1am, when, with the help of some good quality medications, she finally fell into a restless sleep, which ended around 4am when the medication wore off.

After that, her signs were abundantly clear.

'More Dadda'

'More Sisters'

'More Squeaky'

We were told today that it seems we can get into family accommodation as of next week (cross fingers and toes!) which will be brilliant because if we can make the finances work out, it means we can bring the rest of the family down and be together down here while Nicola is doing her treatment, something that I think will benefit them all hugely! It will be good for Jessica and Isabella to see that Nicola is coming home every night and she really is okay, and it will be wonderful for Nicola to have her sisters around for company and play!

Not to mention the fact that it will be good for me to have the rest of them here, for both company and cuddles!

I am discovering it is very lonely being down here alone and it is so incredibly stressful not getting any kind of break from Nicola. At least at home Michael could take her for an hour or two and barricade the girls to the other end of the house so I could get at least a little sleep, here that just doesn't happen, she is always within arms reach, always cranky and sleep deprivation is already starting to set in.

Caffeine is my friend!!!

Tomorrow is her last treatment for the week which means her lines are taken out over the weekend so we can get some down time. I am silently praying for lots and lots of sleep, but hoping that we will at least get enough of a break that we can duck off to the shops and get away from the hospital environment for a while.

It will be good for both of us to have some 'normal time'.

Or, at least, as normal as we can get!

Just Wait and See.

2012-02-06T19:06:00.004+10:00

So, this morning, I decided to drive my big girl to school. Daddy was going to do it so I had more time to pack, except she really wanted me to take her, and how could I resist.

Naturally, the one day of all days I wanted it to be a smooth straight forward drive (clear across town!!) I end up having to contend with a car accident (not mine!), a train crawling through the crossing and a convoy of trucks that blocked two sets of traffic lights... but, eventually we got to school and found a park in the crush of crazed parents trying to escape after first bell had gone.

That was when things started to go bad...

Jessica crawled into the front seat, wrapped her tiny arms around me and started sobbing. Not just crying, but deep, hysterical, body wracking sobbing. When I finally managed to get her to calm down enough to talk to me, she pulled away and looked into my eyes, her own little blue eyes full of tears and cried "Mummy, don't go to Brisbane!"

I tried to explain as best I could that I had to go, but the more I talked the more she seemed to cry. Finally, after about 10 minutes of her crying, she started to calm down and she told me that she was scared of what would happen if I went away to Brisbane with Nicola.

Aunty Kathy went to hospital with Baby Bubble and he died... Now Mummy is going to Brisbane with Bubby Nikka and she's very sick...

And it was in that part of the story that she became hysterical again and told me she would be very very sad if Nicola died.

Now, through this whole process we have been very very careful to not mention "The 'D' word" in front of the children, not even in passing or in veiled reference. Any discussions we, as adults, have regarding 'negative resolutions to our existing situation' are done late at night, usually in our ensuite bathroom, while children are in bed, or during the day while they are at school.

We thought we had nipped this kind of thought in the bud way back last year when we first got her diagnosis, but apparently I was wrong.

When Jessica had her break down this morning, I couldn't do anything else but cry with her, hold her tight, and then I did the unthinkable... I promised her that Nicola was not going to die.

I honestly don't know what else I could have done, nothing else seemed right.

This is going to be the longest stint I have ever been apart from them, and to be honest, I am utterly terrified of how they are going to handle it. Physically they are fine, and they would be well looked after by their Daddy, even if he can't cook very well at all... but mentally, emotionally, I don't know how they are going to handle things.

They are strong girls, they have had to be with everything they have endured since Nicola's birth, but sometimes it feels like this is going to be too much for them.

Hell, most of the time it feels like it's too much for me and I'm a grown adult who understands relatively complex emotions!

I didn't want to face this trip, but the trip went on and here we are. She is asleep in her makeshift bed and I am sitting in a dark room contemplating over what is going to be coming.

Tomorrow morning she gets admitted at 7am to Day Procedure and then taken over to the Adults hospital, anesthetized and given her first dose of radiation, then we go back to Day Procedure for her to finish waking up then we move over to Banksia for her to restart her chemo. Tomorrow night we will stay on the ward because of the side effects of the chemo, and then, well, I guess we just see how she goes.

"Just wait and see"

Seems to be something of an ongoing mantra for us of late... Just wait and see how the chemo goes... just wait and see how the breathing goes... just wait and see how the nausea goes... just wait and see how the radiation goes... just wait and see how her pain levels go... Just wait and see...

Now we wait and see if this is going to give us hope.

It's going to be a torturously long, emotionally painful and physically wearing wait... for both of us.

Unanswered Prayers

2012-02-03T17:25:00.003+10:00

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....

2012-02-02T20:27:00.003+10:00

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.

2012-01-16T21:20:00.003+10:00

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

*******************************************************

"Look how strong you are?"

"You are stronger than you think!"

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

*******************************************************

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...

2012-01-06T20:59:00.002+10:00

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.

2012-01-03T19:00:00.003+10:00

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

2012-01-01T18:54:00.000+10:00

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

2011-12-25T20:53:00.002+10:00

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!

Santa Clause Blues

2011-12-18T12:28:00.002+10:00

Christmas is a time for loving and giving... it is a celebration of family, of friends, of love... and of togetherness...

But for me, it is also a massive slap in the face. It is a huge reminder that my child is still different... my child is not like the others.

Last year it was hurtful because I was buying my 2 year old presents that were 6+ months.

This year it is just heart wrenching because I am buying my now 3 year old presents that are targeted for ages 6+ months.

Beyond that there is the constant niggling little voice deep in the recesses of my mind that keeps whispering that I need to make this Christmas something special... because, as positive as I try to be, being realistic, I just don't know how many more of these we will have together.

With that in mind we have made the conscious choice that we want Santa photos done this year. It's not something that we have particularly put a lot of time or effort into worrying about previously because the line ups are just horrific and people are awful and Nicola just generally doesn't like the crowds and the noise and everything.

I thought I would go out on a limb and I called center management and I asked them if it would be possible to book a specific time to go in and have photos done. I explained to them that Nicola is only 3 years old and has very complex disabilities and is now battling cancer and to line up for an hour would just cause her immeasurable distress and would make the photo impossible...

Just trying to relate all the issues she has with society in general at the moment was enough to reduce me to tears and my husband had to take over the phone call because I just couldn't say any more.

Thankfully it turns out that the marketing manager has a wonderfully kind heart and they have organised for us to meet them at center management and they will take us straight to the front of the line so that we can get her Santa photo.

So far I have spent three days looking in the shops trying to find something suitable to give to Nicola for a Christmas present. I needed to get three of them. One from Santa, one from Mummy and Daddy, and one from Grandad Bob.

Everything that would have been considered 'suitable' for her level of abilities we either already have or is pretty much the same as what we already have.

Everything in the kids section is too big for her, and even the stuff in the baby section, most of it is just simply not suitable because of her disabilities.

It hurts to see everyone else running around, merrily plucking toys left, right and center from the shelves, laughing and having a jolly old time, and all I want to do is cry at the unfairness of it all... not unfairness because it's hard for me, but unfairness because it's hard for her. She is so limited in what she can do, and so limited in what she can use and what she can have.

To top it off, because of the last round of chemo, Nicola is due to be neutropenic over Christmas and New Year which means that she will be prone to all infections and bugs, her bones and marrow will be hurting and she will generally just be feeling miserable and utterly crap.

It's hard, we have to try and make the most of everything because we have other children that still deserve everything we can give them for Christmas, but with Nicola and the cancer and how miserable and cranky and pained she is all I want to do is to cancel it and tell everyone to go away...

But we can't.

Unfortunately, it seems, Christmas just must go on.

When it rains, it pours.

2011-12-09T22:15:00.003+10:00

Today I finally figured out why I have spent this week feeling so overwhelmed with everything.

Even though we are at home, I have been at the hospital every single day this week.

Monday we had to take her in to have some bloods done to monitor her blood counts post chemo.

Tuesday we had to go back for a review because her blood counts were not what they had expected to find - her white cells were too high, her hemoglobin was too low and some of her electrolytes were off. She was sent home because they wanted to take a minimalist approach in regards to intervention, hoping she would self correct.

Wednesday - we had to do a rushed trip at 10pm for an urgent review because she developed severe respiratory distress and started to turn blue.

By the time we got to the hospital she had improved enough for them to send her home as long as we watched her very very closely because being admitted was likely to be more detrimental given that the ward is full of children with nasty bugs.

Thursday we had to go back for a review after her breathing issues. They decided that it was most likely a bit of a viral infection that was affecting her.

Today, Friday, is chemo day in Townsville. We had to go in early for an assessment by the doctors before they could do her chemo. I was late because it took me ages to find a park after some stupid ignorant moron stole the park I had been waiting for, but that is a whole other rant in itself. The doctor was also running late, which made it ok. Then we had to wait for the treatment room to be available and then we had to do bloods etc, and finally she got the chemo done.

At the same time they have diagnosed her with croup, which is what is causing the respiratory problems. Because her lungs are already compromised because of the metastasis in her lungs from the cancer, any little respiratory bug that wouldn't really bother a healthy child all that much is knocking her for six.

So, now, I have a medically fragile child with cancer, who is already respiratory compromised and has underlaying pain management issues, who now has additional pain from bone/marrow pain caused by the chemo, itching caused by the pain medications she is on, and now a red raw throat and respiratory distress caused by croup.

Poor little mite just can't seem to catch a break at the moment!

Only God Can Understand

2011-12-01T10:28:00.000+10:00

Only God Can Understand

My dreams for you are born of faith as I watch you struggle to find your way

They paint a canvas of future hope and the vision of a brighter day

My dreams for you cannot be fulfilled by the efforts of human hands

They are not understood in the earthly realm, only God can understand.

My wish for you is to be the best at whatever you choose to be

To show the world your unselfish love and the joy you bring to me

My wish for you cannot be painted with the words we have at our command

It is not a wish that is made with words, but one that only God can understand.

My prayer for you is to see the world as it was created to be from the start

Filled with love and truth to guide your way as you experience it from your heart

My prayer for you cannot be explained by the greatest minds that fill our land

It is only heard by heavenly ears, for only God can understand.

My love for you does not depend on your abilities or strength to achieve

It is from the deepest part of our souls that our hearts can interweave

My love for you cannot be measured by instruments known to man

It is a love so true that we share in our hearts that only God can understand.

My Happy Baby

2011-11-25T21:30:00.002+10:00

Today I have seen something that I have not really seen for a long time... I saw my happy baby.

I saw the little girl who smiles cheekily, who dances to Wiggles music, blows kisses to people and plays cheeky games and tricks. I saw the little girl who dissolves into peals of hysterics when her sisters entertain her, the same little girl who waves to strangers... and most importantly, the little girl who says "Mamma" and really wants her mamma.

It turns out that she's been there all along, we just needed to get her pain relief under control, which thanks to an on the ball pain team who aren't afraid to take chances and up the ante, seems to be happening.

The difference in her is nothing short of phenomenal.

She is awake and alert and interactive. She is playing games and communicating. She is laughing and joking.

Today at lunch time I was giving her a bit of chocolate custard after she had her meat and veges and she told me she wanted some in her mouth. I obliged and gave her a few little mouthfuls, but then when I started to put it through her tube again she got agitated and started frantically signing 'more' and pointing to her mouth. As if that wasn't clear enough she was opening her mouth as wide as she could and making 'aaah' sounds.

Even tonight when we were leaving Coles she was smiling and waving to strangers and blowing every one kisses.

She still has moments when she is wracked with pain and so uncomfortable, but now they are coming further and further between. Which is phenomenal, it really is... but it also makes it hard.

It makes it hard to reconcile this bright, happy, sparkling little girl with someone who is going through so much, who is suffering through so much pain and has so much going on inside her little body.

It is starting to become more and more apparent though... her beautiful little blonde curls that took three years to grow in, that I have loved so much as slowly starting to fall out. I have noticed more and more that there are stray strands of beautiful blonde baby curls falling in her wake, and really, it's enough to make me cry.

Soon enough just looking at her will be enough to scream 'I AM A CANCER KID!!'

I guess I should start investing in some funky little hats and bonnets for her! Maybe we will even get her a wig... what do you think??

(P.S. I really wouldn't get her a wig, please don't think I'm quite that daft... it would be too hard to keep it on her head! ;) )

RAOK & Utter Chaos!

2011-11-24T22:06:00.000+10:00

So, today was Nicola's second round of major chemo. The day did not get off to a good start from the beginning!

I overslept which means that we were 25 minutes late getting to the hospital, although when we got there, the most unusual thing happened.

We were just getting into the lift to go up to the Oncology Outpatients when a woman I had never met before stopped us and handed us a ticket for the car park. Apparently she had been given a couple of free exit passes to the carpark and she only needed one, so she gave the other one to us.

It was such a surprise, but such a totally welcome surprise! It was nice to have something nice come our way... especially when the rest of the day went so badly downhill!

After getting to outpatients, we saw Dr Peter really quickly, and then we started to wait...

And we waited...

and waited...

6 hours after we got there they FINALLY had her chemo ready to administer.

Because one of the drugs causes damage to the kidneys and the bladder, they have to do 8 hours of intensive IV hydration post chemo, so then we had to wait for a bed on the ward...

And we waited...

and waited...

By the time we got to the ward I had one very tired, very cranky, very moody little girl who wanted nothing more than her dinner and her pain relief and her bed... so I got her into bed, I fed her, I settled her down, and then I went to ask for her pain relief... which is when things went from bad to utterly insane!!!

When the resident came around to do the medication chart for Nicola's admission, I told her that the easiest way would be to just copy from the last one. We were only discharged 6 days ago and nothing had changed except the morphine dose which had gone from 7mg twice daily to 8mg twice daily.

Sounds easy right?

Just copy from one piece of paper to another?

Well, you would think so! But apparently someone with a Bachelors Degree in Medicine can't comprehend the simplicity of such a task!

When I asked for Nicola's oxycodone we discovered that instead of being prescribed 2mg every 3 hours as required, she had been prescribed 10 (TEN)mg every three hours!

This is a hard core heavily controlled narcotic drug that has some insane side effects for overdose, including heart attack and respiratory shock... and this doctor bungled her dose?!?!

Out of every medication on her chart, there was ONE that was correct. ONE. Out of well over a dozen!!

To say that I was furious is an understatement. I am trying to work out how the hell such a monumental screw up could happen... and what scares me even more is that if it wasn't for the fact that we picked it up, there is no guarantee that anyone else would have! I mean, sure, you would think that a nurse would question such an extreme dose for such a high child, but mistakes do happen... we see it in the media all the time!

The whole thing just left me so totally, completely and utterly livid at the whole thing!

Complaints have now been filed and the charts have been rewritten correctly... but still...

Our Last Down Day...

2011-11-23T18:30:00.000+10:00

And tomorrow the fun begins!

Tomorrow is Nicola's second big round of chemo and hopefully we get to head 'home home' a few days later, so today was our last big huzzah as a family, enjoying some down time on our big adventure.

We packed the girls up and went over to Southbank and took them on the 'fairies wheel'. (OMG! $45 just to get on?!?!) They loved it! They all did, even Nicola!

We went to grab some lunch, which ended up being fraught with tears after one of the stinky ibis birds stole Jessica's fish right out of her hands!

Nicola enjoying a piece of pizza she stole from Isabella.

But in the end we enjoyed a meal out and then took them to Southbank to have a paddle in the pretend beach.

To start with I wasn't going to put Nicola in the water, we were just sitting up on the side watching as the big girls ran crazy and splashed in the water, but then I decided to stand Nicola up and see how she went with her feet squishing in the sand. But within about five second she was reaching down trying to get to the water to splash, so I sat her down and let her have a bit of a play.

She absolutely loved it! I have never seen her react in such a way to being in the water. Normally if you put her in the bath she freaks out and cries until you take her out, but today she was splashing and playing and really loving every second of it!

They all did!

Blowing kisses for the camera!

Heartbreak. :(

2011-11-22T21:16:00.002+10:00

Today the most horrible thing happened...

We have been having an ongoing fight with the hospital over finding Nicola a surgery spot to have her port revised. The problem we have is that if they can't get her a place this week, then we are going to find ourselves stuck down here for another three weeks.

Which is just going to cause so many problems! We need to find somewhere else to stay because we can't stay here indefinitely, we are on very limited finances because this is all so very very expensive...

So when they told me this afternoon that the earliest theater slot they could get her was next Wednesday, I broke down and started crying, mainly from frustration and stress.

At which point my beautiful little four year old Isabella came out, hugged me, and said "Mummy, if Nicola dies, I am going to be very sad."

Honestly, you could have knocked me over with a light breeze. My heart just stopped. We have tried so hard to shield them from the reality of Nicola's diagnosis, and have made it very clear that no one is to even hint at the fact that Nicola might die, because I didn't want them to deal with that level of stress.

Apparently I didn't try hard enough.

I asked her where she got that idea from, and she told me Jessica told her. Where Jessica got it from, I have no idea, she won't tell me... but for some unknown amount of time she has been harbouring this fear that her baby sister is going to die, and she has been trying to protect me by not telling me about it.

Well that set me off all over again... between tears I was trying to explain to them how Nicola is very sick and how the tumor in her tummy that we have talked about is making her very very sick, but the doctors are giving her special medicine called chemo to try and make her better.

I am so out of my league here... I honestly don't know what to do. My first instinct is to shield them, to lie to them and promise them that everything will be OK and that Nicola will be just fine, but what if it isn't?

Being realistic, statistics are not on our side. They are stacked so highly against her that some hours it seems utterly insurmountable... yet how can I put that kind of stress, that kind of fear and heartache on two little girls who are still little more than babies themselves?

I spoke to our social worker back home who has said she will look into some counselling options for them, but until then, we just have to wait it out...

But at least now I understand their odd behaviour and their tempers and mood swings!

:'(

A World of Dreams

2011-11-20T19:09:00.000+10:00

Nicola is a Wiggles fanatic.

Really, we have probably passed fanatical and are moving well into the territory of psychopathical!

So, with some love from family, we were given the chance to take the girls to Dreamworld today.

I thought Jessica and Isabella were excited about it until Nicola saw Wiggles World... well, then it was all over.

There was a live Dorothy the Dinosaur show, with Dorothy, Waggs the Dog and Captain Feathersword. We arrived late so we had to stay at the back of the room, but as soon as Nicola realised what was going on she started clapping and dancing in her chair and going completely insane!

One of the Dreamworld photographers saw her going crazy at the back of the room and kept pointing her out to the other staff and making that 'oh look at her! Isn't that adorable?!' face in Nicola's direction.

Then, as soon as the show finished, they pulled us aside and set Nicola up on the stage so she could get photos done with the cast.

To say she was excited about the proceedings is a complete understatement! The look on her face when she realised that she was face to face with Captain Feathersword is nothing short of priceless!

Eventually we managed to prise her away from so much super star attention and we got her onto the Dorothy Tea Cups and the Wiggles Big Red Car ride.

In all, more than half our day was spent in Wiggles World before the call for food got too much and we had to tear her away to feed her.

Even Jessica and Isabella had a great day, they went on ride after ride, and Jessica came home very proud to announce that she went on all the fast rides and didn't get scared once! And Isabella only got a little bit scared!

All in all I think a great day was had by all, definitely not one that will be forgotten any time soon!

A Little Bit of Normalcy!

2011-11-18T17:58:00.001+10:00

So, after a very hectic and stressful three weeks, tonight we have our baby girl 'home' with us.

'Home', for the moment, is staying with a friend who has been kind enough to open his apartment to our large, noisy and overwhelming family.

So tonight, I sit at his kitchen table, looking out over the Brisbane River, Southbank, and the Treasury Casino, watching all four of my children interact happily for the first time in over a month.

To say that this is bliss is an understatement. This is the epitome of happiness. It is simple, uneventful family life, and I am utterly loving it!

Unfortunately I know that this is going to be very shortlived. At the very latest we know that she has to go back in for her big chemo on Thursday and that requires an overnight admission for 8 hours of intense hydration afterwards. We also know that she is waiting for a surgery slot to have her port revised because it isn't working properly... so we can get a phone call basically at any moment telling us that we have to take her back in.

With that in mind, knowing that we have this weekend free and clear, I am determined to make the most of it! Tomorrow we are going shopping. Not for anything exciting or interesting or specific, but just to spend some time wandering aimlessly around the stores, which is something that Nicola loves!

Then, if all goes according to plan, on Sunday we have a special surprise for our girls!

But regardless, we are going to make the most of it while we can!

The View.

Officially Official.

2011-11-11T18:25:00.003+10:00

So, here we are. Two weeks after we first started this incredibly intense journey, we have a final answer. We have an official diagnosis.

Nicola has Stage 4 Embryonal Rhabdomyosarcoma, or ERMS. The ERMS has metastasised to her lungs and probably her lymph nodes, but her bones and bone marrow seem to be free of disease so far.

Regardless, she has a very very long and difficult journey ahead of her. The survival rate of a stage 4 ERMS in a normal healthy child is around 40%.

Nicola is not a normal healthy child. She is a child who, because of a bad card in the genetic lottery has a predisposition for cancer. She has been plagued by health problems since her birth and has spent many, many days, weeks, even months in hospital.

We have been faced with losing her so many times, but none have ever seemed quite as real as this.

I find myself swinging wildly in my own emotional response to everything that is going on... going from being certain that everything will be fine and she will breeze through her treatment, to being almost certain that she won't get through this journey and the thought just tears my heart out.

I cannot imagine any part of my life without her in it.

Yesterday was her first really really bad day since all of this started. In the morning her port was blocked and wasn't bleeding back or flushing, which meant that she hadn't been getting her pain relief and couldn't be given her IV medications or her chemo which she was due that morning, so they had to have it reneedled.

Then her dressings on her shunt had to be changed again. Because of the chemo all of her counts, including her neutrophils completely crashed and she spiked a raging fever.

Because of the pressure area over her VP shunt they immediately assumed sepsis and started pumping her full of IV antibiotics.

She was awake from 5am until just shy of midnight before they finally managed to fill her with enough drugs to get her to sleep, even then she was still waking every hour requiring more.

Thankfully today has seen a slight improvement, but she is still far from comfortable or settled. She is rather restless and uncomfortable and struggling with frequent bouts of severe pain. She is still not handling much in the way of food, which could be a side effect of the chemo or it could be that she has picked up a bug in the ward, or it could simply mean that the tumor has swelled from irritation from the chemo and is now applying excessive pressure on her stomach, making it harder to tolerate anything much at all.

The hardest part at the moment is hearing her beautiful little voice calling for "Mama" and seeing the look of pain in her eyes, and not being able to do anything to help her. I can't pick her up, I can't cuddle her, I can't hold her, I can't comfort her, I can't do much more than sit beside her, hold her hand and tell her that I am there.

It's been a bad week in general and in general, it all just plain sucks.

:'(

Bad Hair Day

2011-11-07T18:45:00.002+10:00

Ok, so yes, this means there will be two posts today... but hey, what can I say... this is my journey.

Today has been a bad day... a bad bad day!

Ironically, Nicola has been relatively good today. Although she hasn't really settled and she still is in quite a bit of pain, she is all in all doing really well.

Today was Mummy's day to fall apart.

I don't know what it was but the day just really started wrong. From the moment I woke up which was far, far too early, everything has just grated at me.

I decided I was going to splash out and be extremely luxuriant after yesterday's fiasco's and I went to get myself bacon and eggs from the cafe. They had no fried eggs, only scrambled, and their scrambled eggs taste like crap... so after much cajoling, I managed to convince them to make me ONE fried egg. Not sure why they wouldn't make two, it wasn't that much more difficult than one, but hey, beggars can't be choosers, right?

What they gave me, well, I guess it counted as fried. I'm sure it touched the hotplate for maybe a second or two! Then it was slopped in on top of the bacon and made everything all oooey.

The nurse we had this morning made me feel like I was completely incompetent because apparently I am not allowed to give my child her medication or weigh her because I might do it incorrectly.

Uh, hello? Who do you think gives her medications when she's at home?! Yeah, that's right... ME!

I got Nicola up and sat her in her wheelchair for her breakfast and to have a little bit of a play because she seemed to be a little happier this morning. After her breakfast she started to get cranky and irritable, I turned around to make her bed up and then turned back to get her and she's twisted herself uncomfortably, arched out of her chair, and ripped her Mic-Key button straight out of her stomach, balloon still inflated and is quite happily leaking stomach contents all over the floor.

I grab her and put her on the bed and clamp my hand over the stoma site and realise that I can't reach the call button, so I ask the mother from the next bed to help. She pushed the call button... and we waited. And she pushed it again, and we waited... and she pushed it again. Then she walked out in the corridor and to the nurses station, and there was not a nurse to be found anywhere!

Finally we managed to get the ward receptionist who managed to find a nurse who came in. I asked for a 10ml slip tip IV syringe so I can deflate the balloon and get it put back in. They can't find them. They don't have any on the ward. She will page a wardy to go to another ward and see if they can spare some.

Uh... you're kidding me right?

A good 10 minutes later they manage to find some in the store room and I can deflate the balloon, put it back in and sort it out.

Not a drama!

Well, at least not much of a drama!

Then the stoma nurse has to come in and check it, after all, I'm so incompetent that I might not be able to do that properly either, even though I do it regularly at home! The stoma nurse see's the pressure mark on the back of Nicola's VP shunt that I have been telling them about for the last 4 days and she tells me off because Nicola's blood counts are about to drop which means she's prone to infection and I can't leave it go on like that! I tried to explain that I have told the nursing staff repeatedly over the last four days and they weren't worried about it, and she cuts me off and then has a go at me over the length of Nicola's nails and how I need to take better care of her and cut them properly.

Then she tells me that they're going to cut off all Nicola's hair so that they can put a dressing over the shunt site. I get upset and object. I tell her that we know that Nicola is going to lose her hair in a few weeks anyway and I want to keep her pigtails while we can. If they want to they can remove the hair around the shunt, but they don't need to cut off her pig tails which are on the top of her head.

She tells me off and tells me that I have to start putting Nicola's best interests first and walks away.

Then the Nursing Unit Manager comes in and has a go at me again about the mark on the shunt site and then the length of Nicola's nails, and finally about me not wanting to cut off her pigtails.

She tells me that it's going to happen anyway and again I need to start putting Nicola's best interest first.

The Stoma Nurse comes back with a trolley at which point I pick up my bag and walk out with a few choice words and leave my husband to deal with them, making it very very clear that if they cut off her pigtails they WILL know my wrath...

Then I walk down to the playground, hide behind the equipment, phone my mum and cry.

Finally my husband comes and finds me and reassures me that it's ok, they didn't cut off her pig tails, and I'm really not a bad mother at all... and I go back up.

At which point the oncologists come around and tell me that the dietitian has been telling them that Nicola is not getting enough nutrition and she needs to be put on formula, which I am vehemently against, and she knows it!!!

Which really made me angry all over again because it was such a deceitful and underhanded way to go about it!

Then, to top it all off, they had to remove the peripheral line that they put in yesterday, all through complete incompetence. When the line was put in the medical staff forgot to write up the flushes to keep the line open. I asked about it several times today and kept getting ignored. Finally this afternoon one of the nurses came and tried to flush it and it had been tissued.

She was put through all that pain and trauma for absolutely nothing! The line was wasted because they couldn't scribble a few words on a piece of paper!

By the time the social worker came around this afternoon I ducked out and managed to dodge her... if I had had to deal with that as well I may have just lost it!

I have spent most of the day alternating between wild anger and sobbing hysterically and all in all it has just been a really, really, really bad day.

Tomorrow can only get better, right??

Dear Dietitian

2011-11-07T12:46:00.003+10:00

Dear Dietitian,

First of all, I would like to tell you that you are gutless! You are a gutless coward! If you have a problem with the way I am feeding my child, come and talk to me yourself!

Oh, that's right, you did! I told you that I would NOT put her on formula... you told me that I was neglecting her health. I asked you if you drank formula for every meal seeing as how it was so healthy, you huffed and walked away.

Nicola's oncology consultant AGREED with me! He agreed that formula was not suitable for Nicola because of the impact on her bowels. Instead of leaving it at that, you went behind our backs to the fill in doctor while Nicola's doctor was away and had a bitch and whinge because in YOUR opinion Nicola is not getting her nutritional requirements.

Based on what?? Based on the fact that last weekend Nicola received very little solid food and then over the weekend Nicola's meals were returned to the kitchen uneaten.

Well, Dear Dietician, how about you find out the facts before you start throwing around accusations? Last week, on Monday Nicola was fasted until 3pm before we found out she wasn't going to theatre. On Tuesday she was fasted until she actually went to theatre. She had a major operation on her gut which then caused her gut to shut down in response. She was then put in clear fluids only until Friday evening when the surgeons finally decided that they could hear enough bowel sounds to have her eating again.

Saturday, the meals that came from the kitchen were minced, not pureed. Minced foods CANNOT go through her PEG. I fed her from my own personal supply of foods and sent the meals back to the kitchen.

Sunday, the meals that came from the kitchen were minced, not pureed. Minced foods CANNOT go through her PEG. Again, I fed her from my own personal supply of foods and sent the meals back to the kitchen.

On both days she has consumed healthy foods, fruits, meats, vegetables, yoghurts and custards. On both days she has been given apple juice and water and milk.

On neither day was she given unhealthy or insubstantial foods!

I will NOT put her on formula because you are completely and utterly incapable of thinking outside the box. I will NOT put her on formula because YOU think I am doing the wrong thing, and I will NOT put her on formula because it's easier for YOU.

And finally, do you realise how completely and utterly STUPID you sound when you stand there and tell me that real food is not nutritional enough? Really? If meats, fruits, veges, grains, dairy etc are not nutritional then the world at large is in very, very, very big trouble!

I suggest you go home, enjoy your formula and leave us the hell alone to enjoy our nice foods because I will not be listening to anything you have to say in the future.

Regards,

One very very angry (and just a tad emotional) Mummy.

Another Day!

2011-11-06T18:03:00.003+10:00

I think today officially classes as our first bad day!

It's not just been one thing, but a whole array of little things that have just driven me to tears.

Start with the fact that I woke up around 2am having nightmares. It is amazing how many of your deepest darkest fears can creep into your dreams as soon as you relax. Naturally, after that happened I found it incredibly difficult to sleep and spent the rest of the time watching daylight sneaking in around the curtains.

With morning came one disaster after another.

First her catheter stopped draining. Oncologists were called in to make a determination as to whether they would just remove it or whether she was still close enough post chemo that they would have to insert another one.

They decided to leave it out, thankfully!

Then we discovered that she was oozing blood from around her button, and the surgeons were called in to assess it. It was then turned back to the oncologists as a likely ulceration of her stomach lining caused by the chemo.

Give her more medication and wait it out.

After lots of fussing and trouble they finally managed to get bloods to do a blood count, only to find out that her hemoglobin levels had completely tanked and she needed a packed cell transfusion.

(huge, huge, MASSIVE thanks to all of you that donate blood!)

Now we have another problem... she has one port, currently in use for pain relief (morphine and ketamine) and saline. Narcotic drugs are incompatible with blood products. They can't stop the pain relief because her pain has escalated significantly in the last 24 hours.

Solution?

Insert another peripheral line.

Into the treatment room we go, much to Nicola's absolute disgust! Four attempts later they finally managed to get a line in that worked to both bleed back and flush. Back to the room and they set up her transfusion.

She has been trying to take a nap since 10am this morning only the other family we are room sharing with are loud, noisy, obnoxious and completely inconsiderate! Every time we finally get her settled they start shouting and yelling and carrying on... or, in the odd instance the rest of the family happens to disappear, the mother will run off and hide downstairs to have a dozen smokes (uh, hello?! your child has CANCER and you're smoking?!?!), and leaving her child in the bed crying anxiously for her to return!

They have increased the dose of lasix they are pushing through to try and get her to drop the 3kg of fluid she has retained in the last week, so she is weeing out a small river, to the point that we are just about changing the sheets with every nappy and nappies are getting changed every 30 minutes or so...

She is still having massive problems with her bowels post surgery, and today has seen a pronounced increase in her pain issues. They think that perhaps the chemo is causing the primary tumor in her pelvis to become inflamed and swollen before it starts to die off.

The final insult to a very long line of injuries?

Someone stole our stuff from the fridge in the parents lounge. They stole my coke, but more importantly, they stole Nicola's apple juice and chocolate custard.

After promising her through the entire peripheral line insertion I promised her that as soon as we got back to her room I would give her a chocolate custard, and then I had to break that promise because some lowlife scum took food from a sick child!!!

Yes, I am just a little bit angry about that!!

So all in all, it has just been a completely and utterly crap day.

The only thing I hope is that tomorrow, being a fully staffed Monday, will bring a better day!

I miss my beautiful baby girl's cheeky smile!!!

:'(

It's All Purple.

2011-11-04T19:33:00.002+10:00

I guess first things first, I should be apologizing for not getting this post out last night. For anyone that is friends with me on Facebook I had alluded to answers yesterday, and made promises of a blog post that would be published last night...

All I can say is that something else came along.

Something along the vein of a very good friend, some very good Thai take away, and some very good alcohol.

So, anyway... back to the story at hand.

Yesterday we got some answers.

We still don't have full answers, but we at least know some basics.

It is definitely, absolutely, 110% certainly cancer. It is from the rhabdomyosarcoma family, which we expected. They are fairly certain that it is an embryonal but they won't know that for sure until the tests come back, which should be early next week.

The answers were enough for them to be able to start chemotherapy yesterday.

I really have to say, after all the build up and intense emotions in the lead up, actually starting chemo was somewhat anti-climactic!

The first treatment was over within a matter of minutes. It was a simple injection through her porta cath.

So that is where we are.

We have just started week 0 of a 42 week chemotherapy treatment regime.

So now, it's all purple. All her lines are stickered purple for cytotoxic waste. Her nappies and waste all go into purple bags for cytotoxic waste. The first 10 days after each chemo treatment she is cytotoxic. From day 8 to day 15 she needs to be wrapped in a bubble and protected from the world as her platelets, bloods and white cells crash spectacularly, and then we get a few days of grace and freedom before we start the whole process again.

Through all of yesterday, through talking to the surgeons and discovering the extent of the cancer spread in her abdomen, having a brutally frank discussion with the oncologists about her chances, even through her first round of chemo being administered I held it together. Then the ward receptionist brought me in Nicola's bravery beads, and I fell apart. A few cheap stupid plastic beads and I totally lose it.

So that's where we are. We have some answers, but we're still just really holding. We spend one day a week doing chemo and the other 6 days a week trying to find the strength to keep hoping and praying that she will get through this.

We are hoping that at some point we may be able to start sneaking home to north Queensland between major treatments, so that means that out of every three weeks, I will only have to spend 3 days out of town and away from my family.

At least that will give us some basic comforts, like food that doesn't come from a box or gets zapped in a microwave... like beds that don't feel like you're sleeping on a plastic sack of broken concrete... and most importantly, the comfort of home, of safety, of security, of family, and of our familiar environment.

Until then, we maintain status quo. We pass each day hour by hour, just watching and waiting.

Waiting...

2011-10-30T20:18:00.005+10:00

Yesterday I did what h3as so far been one of the hardest things I have ever had to do in my life. I hugged and kissed three of my four children, told them I loved them and I would miss them terribly, and then I turned around and I walked away. I don't know when I will see them again.

I really don't remember that I have ever felt so heartbroken or desolate at going away from them... but I cried most of the flight... and of course, it had to be the one flight I've taken in the past 18 months where I didn't have any of my familiar flight staff, so there were lots of questions, which lead to lots more tears, and generally just a miserable flight in general.

Presenting to the Emergency Department in Brisbane was a bit surreal. We weren't kept waiting, the first doctor we got that did the paperwork for our transfer was one that treated Nicola when she was very little, and then we met the oncologist.

And then we started waiting...

And waiting...

And waiting.

24 hours on we are still in some what of a holding pattern.

We have seen the oncologists and we have seen the pain doctors and we have seen the surgeon. We have something of an initial plan... we just have to wait for the timing to be able to get everyone together to make it happen.

Nicola needs to go into theatre. She needs a central line for IV access, as well as biopsies of the primary mass in her pelvis, her bones and her bone marrow and she needs to have nefrostomy bags put in to drain her kidneys because the tumor has occluded her uretera's completely and her kidneys are under pressure.

The bad news is that the tumor is completely unoperable. The sheer size of it and the fact that is impacting on nearly every major organ in her little body means that they cannot safely cut it out.

We have to hope that chemotherapy and radiation can shrink it enough to make surgical removal a viable option.

But we can't start chemo or radiation until we know exactly what kind of cancer it is that we are dealing with. They are fairly confident that it is a rhabdomyosarcoma, but they need to be certain, and they also need to know how far it has spread.

But before we can find any of that out we are waiting for a theater space.

It all seems so absolutely surreal. Three days ago we were talking about taking our first real family holiday, trying to get a few days at the beach with our girls, trying to give them a sense of normalcy. Three days ago we were arguing about money and getting our bills paid, what we wanted for dinner, were the girls eating enough veges, and which way was the best route to drive to do the school run.

Now, our lives have been turned upside down, inside out and back to front and I don't know which way is which any more.

So, we wait for direction. We wait for answers. We wait for hope...

We just keep waiting...

And waiting...

And waiting.

Preliminary Results.

2011-10-28T19:37:00.002+10:00

Nicola had her MRI today. The Oncologists in Brisbane ordered a CT scan of her chest as well while she was under the general anaesthetic.

The results were available very very quickly.

There is very little doubt that it is cancer. The only thing now is that they are unsure of the exact type of cancer. The primary (extremely large) mass in her pelvis is either stemming from, or impacting on, one of the main support muscles next to her spine. Because it could be stemming from muscle they believe it could be a rhabdomyosarcoma, but, because the mass is also located on the left side of the body and impeding her bladder and her bladder function, they believe there is also a possibility of it being a neuroblastoma.

The CT scan showed that in addition to the vascular tissue around her gall bladder and inferior to her liver, she also has clusters of 'sub tumours' in her lungs.

We have flights booked to leave for Brisbane first thing in the morning. The only reason she is not on a plane tonight is because it is too soon after her anaesthetic this afternoon for her to fly.

The team of oncologists are waiting, having reviewed the scans and images, and once we arrive they will talk about a battle plan.

Our one saving grace at the moment, touch wood, seems to be that the primary mass does not seem to be impeded by any major arteries or veins or anything, so it should be largely operable... but again, we won't know any more until we talk to the experts tomorrow.

I have pretty much stopped answering my phone, I can't talk to people at the moment, I am barely able to talk to family and friends. I have seen such an outpouring of love for Nicola in the last 24 hours, it has made me realise how truly lucky we are to have people to support us, to love us and pray for us while we go through this.

To say we are gutted is an understatement. Today I saw my husband cry. Not just a single tear, but great wracking sobs of a man who's heart was breaking. I have never seen that before. I have never seen him display so much raw emotion.

Everything at the moment feels so unbelievably scary. I keep trying to tell myself that this is just another bump in what is going to be the very very long road of Nicola's life, but then little thoughts creep in. Niggling little thoughts that worm their way into my mind, and then I start to cry all over again.

This is my baby.

How are we going to get through this one?

Pray, Hope, Love.

2011-10-27T18:56:00.004+10:00

For the last two and a half years, give or take, I have looked back on the day I was given Nicola's diagnosis, and I have often felt like it was about the worst day of my life. My love for my child was never challenged, if anything, it strengthened about a hundred fold in the space of a few words, but with that love came the intense fear.

Fear for my child's future, fear for her well being, for her health, for her safety... fear for her life.

Over the last two years, that fear has slowly subsided and been replaced with a determination that we would not be beaten. We have faced insurmountable battles and we have triumphed, we have challenged the odds and won. Each new victory bought with it a stronger sense of unbeatableness.

Today, I find that feeling of insurmountable unbeatability has not only wavered, but it has been shaken to it's very roots.

Today I was told that my daughter most likely has cancer.

Over the past couple of months she has become more and more irritable and miserable. Over the last two weeks in particular she has started showing signs of bloating and abdominal distention. We saw her paediatrician last Thursday who did some urgent x-rays, suspecting that she had a blockage or impaction in her bowel.

The x-rays showed that there was nothing clearly wrong, so the Doctor ordered an abdominal ultrasound to have a closer look.

The ultrasound today that revealed a rather large mass in her pelvis. The ultrasound report says;

"10.5cm x 9.0cm x 11.0cm solid mass in the pelvis displaying internal vascularity."

They also noted that there is a 2cm solid mass inferior edge of the left lobe of the liver, most likely representative of a node, and solid vascularity material surrounding the gall bladder extending inferior to the liver.

We are scheduled for an MRI tomorrow to find more information but they have told me that she will require surgery regardless because the mass is obstructing the flow of urine into her bladder and her kidneys are moderately obstructed.

We have been told that because of Nicola's over all condition we have been told to assume cancer until they can prove otherwise, which probably won't be until we get to Brisbane and see oncologists for the surgery, and we're not sure when that will be happening, though we believe they are pushing for it to be pretty quick.

All of a sudden I don't feel confident, I don't feel unbeatable, and I certainly don't feel determined or triumphant.

I feel lost, alone and empty. I feel cold and numb.

My baby, my beautiful, sweet, innocent baby, who has already battled through so much, has a monster growing inside her, a horrible, sinister, deadly monster.

I can't fight it. I can't make it go away.

The journey ahead is so intense, and that is just finding out what we are dealing with. At the moment I can't even begin to comprehend dealing with chemo and radiation and all of that.

It all just feels so completely overwhelming, and I can't process it.

All I want is to go to bed, curl up and sleep and wake up with today having never happened.

Instead I will smile and pretend. I will pretend to be strong, I will pretend to be brave. I will pretend that everything is going to be just fine, even though deep down inside my heart is breaking.

I will hide my fears and I will not cry, I will show strength and courage even though I want to run and hide, and beyond all, I will pray, I will hope, and I will love fiercely.

Because other than pray, hope and love, I don't know what else I can do.

A Day in the Life of...

2011-10-23T19:55:00.004+10:00

A lot of people tell me repeatedly that they can't even begin to imagine what my life would be like...

So after a particularly particular day, I have decided that I would share a few tidbits of my day.

After waking about every hour last night, Nicola decided that a great time to start the day was 5.14am. She wanted up, she wanted out of bed, she wanted a clean nappy, she wanted her medicine and she wanted her milk and she wanted them all in that exact order.

Then she wanted breakfast. We had tried to do some quality family time this morning and we had decided to have barbecued bacon, eggs and potato gems for breakfast. Jessica and Isabella rang Grandma and Grandad and invited them (while I was in the shower, without asking me!) so it turned into a real family affair...

Except Nicola didn't want to be part of it. It was too hot, to bright and just not what she wanted.

So she screamed, so while the rest of the family sat outside, Michael sat inside with Nicola while I cooked and then I sat inside with Nicola while everyone else ate.

We decided to take the girls to the duckponds to have a bit of down time. I normally love the duckponds, it's so relaxing and so inviting! There is usually some shade and a lovely breeze and the big girls have a great time throwing bread (that we buy specially because the ducks like soft bread too!) to the ducks, turtles and fish.

Except Nicola didn't like it. It was too hot, too bright, too noisy and just not what she wanted. So she screamed. The more she screamed the more Alyssa screamed until the ducks all got scared away. So we gave up, packed up and came home, where, despite her protestations that she was tired and wanted to go to bed, she outright refused to sleep.

I turned the blender on to blend her foods, and she screamed.

I turned the tv on for her to watch Wiggles and she screamed.

I put her on the floor with some toys for a play and she screamed.

I put the iPad on for her to play with and she screamed.

I went to the loo and she screamed.

I talked to her sisters and she screamed.

I had so many things I was planning to do today, including mow my yard so my children can play without risking being attacked by a tribe of mysterious pygmy's, and mopping my floor and doing my dishes and trying to tackle the ever rising mountain of washing, but nothing got done.

Why?

Because Nicola screamed.

My day ended with my 5 year old sitting outside on the swing crying because I broke a promise to her.

I promised her that this afternoon we would play soccer together in the yard, but I couldn't, because Nicola screamed.

This has been what a large part of our life is like. She suffers from a mix of chronic idiopathic pain and extreme anxiety, as well as frustration at not being able to express herself and not being able to get involved etc.

I do what I can, but I can't do enough and so she screams. She screams all day, she wakes through the night. We don't sleep, we don't relax, we don't get time off, we don't get a break.

This is what our life is like. It is relentless, but it is done with love.

The Spidey Sense Twang!

2011-10-21T14:21:00.000+10:00

I have to say, one thing that has come out of having a child with medically complex special needs is that it well and truly shattered my over re-activeness in parenting!

I don't think I've ever been really bad, I'm definitely not as bad as some... but now I think, at least when it comes to my 'normal' children, I tend to be pretty laid back.

"Really? My kid has a 40 degree fever? Are her toes still twitching? Then she's all good!"

I don't tend to over react a whole lot.

Yet, Nicola almost always sets my spidey sense twanging. I can't even say twinging because it is so much more than a little twinge, it is a great big resonating twang!

Take her most recent little game. She woke last weekend with a bit of a temperature. Nothing too frightening, gave her a bit of panadol and set her down to go about our day... and then it started.

Oh My God! She's vomitting!!

She probably has gastro.

She is really irritable, I wonder if that's something.

She's not sleeping properly. Maybe that's something?

Hang on! Why is she even vomiting? She can't vomit! She's had a fundo!

She's vomiting!

Maybe it's neurological?

She has a shunt, could it be blocked?

Does the shunt look squidgy? (yeah, real medical terms here!)

No, there's no squidginess.

She's vomiting and she has a fever.

She's undone the fundo.

But it presents as possibly neurological...

Hang on! She's undone the fundo!

That fundo was holding down a hernia!

If she's undone the fundo, where is her gut sitting? Does she need surgery for that?

Crap, she's vomitting again and she's screaming and hitting her head...

So surgery for the fundo and if she keeps going this way likely a hernia repair.

She probably needs surgery for the neuro stuff.

I can't see any obvious signs of damage to the shunt or blockage. Maybe it's completely malfunctioning!

Oh God! Should I phone the neuro surgeons and get them to start organizing tests?

I don't know...

Maybe I should phone the paeds?

No, it's a weekend, we have to deal with Emergency and they're useless.

Tomorrow is Monday, I'll hold off and see if we can wait til tomorrow and talk to her paeds.

Oh, never mind, there's the poosplosion! It's just gastro after all!

Mind you, this mental conversation takes place over many hours, but still, it kind of gives you a bit of an idea.

A week later, my spidey sense is still twanging, but for a whole range of different reasons... I've spent ages trying to figure out why I seem to have a permanent headache, I have blamed my children, my husband, too much chocolate, not enough chocolate, too much caffeine, not enough caffeine, heat, sunlight, and a million other things, but it seems that all along, it's just my own spidey sense twanging away in the recesses of my mind, making it's presence always known.

Now if I could just find a way to silence it!!!

Proud Mummy Moment!

2011-10-16T18:54:00.001+10:00

This afternoon my 5 year old, Jessica, proved to me how exceptional she truly is.

I decided to get out and mow the back yard to try and keep the damn nut grass at bay. While I was out there, I told Jessica that she was in charge of the babies. She likes to get a bit of responsibility, it makes her feel important, and I like giving her the boost.

I was only outside for maybe about 40 minutes, if that, and I checked on them all several times. They were quite happy watching Dora on tv. But when I came back in after putting the mower away, I couldn't help but smile at the sight that greeted me.

Jessica had decided that Nicola was thirsty and wanted some water... so by herself, she went and got a cup of water, a syringe and a tube. She plugged the tube into Nicola's Mic-Key port, drew up a syringe full of water and started to give her sister water.

Nicola clearly wasn't in the least bit phased by it. I was so proud of Jessica for being so thoughtful and so kind and so considerate, but it didn't end there!

When Nicola signed that she was finished, there was still water in the cup, so Jessica decided that Alyssa was thirsty too!

Naturally, Alyssa was syringe fed too! :D

(Sorry about the dodgy photos! They were snapped on my phone!)

A Frequent Flying Tragic.

2011-10-03T18:40:00.005+10:00

Since moving back to Townsville last April, I have done a lot of flying back and forth between Townsville and Brisbane for medical appointments. We have worked to move as much as we can back to our local hospital, but even though we have a tertiary grade hospital, it is still a regional hospital and there are many many specialists that we are missing here. So, we still fly... down and back, down and back, down and back...

You get my drift.

I have often joked that I am just about part of the furniture when it comes to the airport lounges in Brisbane and Townsville, but today it became startlingly apparent exactly how accurate that joke has become!

So, lets start the day of a Frequent Flying Tragic at 3.45am when I crawled out of bed, much to my disgust, in order to meet my 5am deadline for checking in. Finally get out of my front door at 4.50am to walk to the airport... a walk that usually only takes me just under 10 minutes if I take my time.

I had barely gotten on to the main road and a car pulled over asking me and a voice calls out asking me if Nicola and I would like a lift. It was a flight attendant that we often see on our flights. I politely declined and said that we would be fine, I was quite enjoying the walk. A second flight attendant pulled over and asked me about 2 minutes later.

We got to the airport, the security guard in the car park knew me by name and said good morning.

The staff on the check in desk knew my by name and knew Nicola's exact needs. They pulled me out of the queue and let me through straight away.

The security staff knew us both by name, knew to be mindful of Nicola's stoma and her button and knew that she doesn't like strangers and they had to be quick.

The flight attendants on the flight knew us, the captain knew us and the special assistance team knew us.

When we landed in Brisbane, the special assistance guys knew that it was us before we even got off the plane... How? They recognised Nicola's wheelchair.

I realised after I had left the airport that in many ways I have started to form pseudo friendships with these people. One of the special assistance guys in Brisbane, his wife is due to have a baby in 21 days. I have known since she was about 11 weeks. Every time I go down he tells me the latest updates... and I know that next time I go down he'll have a photo to show me.

By some stroke of luck I ended up with our 'regular' taxi driver, even without calling him to tell him we were flying in.

When we were through, I decided that rather than go shopping or wasting time in the city I would just hop back to the airport... the Customer Service Manager of the airline recognised me when I was lined up and pulled me out and was even nice enough to find me seats on an earlier flight so that I didn't have to sit around for another 6 hours in the airport waiting to return home.

They boarded us early again so we had time to settle Nicola before the rest of the passengers boarded.

And, that was when the real fun began!

Now, I suppose I really should stress that the next part of this tragic tale is definitely not normal fare.

We were given the wrong information... or, rather, we weren't advised of the gate change until they went looking for us to board us early. Our flight was changed to gate 20, I was waiting at gate 1 where they told me to be.

We do a mad dash through the airport and get out to the gate. They take us straight down and put us in our seats and take Nicola's wheelchair and stow it in the cargo hold.

They started to board other passengers... about a quarter of the way through, the airport sirens start to sound. The airport has been locked down for severe storm warnings. The planes can't fly. Everyone has to get OFF the plane and head back into the lounge to wait. Because they've taken Nicola's chair, we can't get off the plane, so we sit there, waiting.

The airport is locked down for about 30 minutes before they finally clear the severe weather warning and start boarding passengers again.

Finally, everyone gets boarded and then they announce that because the airport was locked down at 2pm, which is when the industrial action kicked in and all the baggage handlers went on strike, there was no one to load our luggage into the plane and we couldn't take off without the luggage.

Another 45 minutes later and they finally get things loaded up and we can depart, but by that point we have to compete for space on the runway and end up having to taxi to the furtherest runway and take off from there.

So the flight that was supposed to depart at 13.55 ended up departing at around 15.00.

By which point Nicola had been sitting in the plane for about an hour and a half and was utterly over it, so naturally that set her up to be cranky and she screamed the whole flight home.

All I can say is that I don't know who was happier to see her bed... her or me!

Still, at least another trip is over and done with. Hopefully we will get a bit more of a break before we go down for the next one!

Maybe we can even make it a family holiday... I dare hope!! :D

Except Nicola...

2011-09-22T21:51:00.001+10:00

Except Nicola...

This seems to be a recurring theme in my life... there are so many things, so many trivial little things that happen... and they just point out again again the difference between Nicola and her siblings.

Today I spent time doing all the girls hair, pig tails, pony tails, clips, bands, etc... that is, all except Nicola. Her hair is too fragile to be tied up.

We all sat on the floor with Alyssa... that is, all except Nicola. She doesn't sit on her own and had to be in her chair.

We all shared some hot chips for lunch... that is, all except Nicola. She doesn't eat.

Tonight I managed to cuddle all of my children to sleep... that is, all except Nicola. She doesn't like being held and only sleeps in her own bed.

Now, I sit here knowing that they are all sleeping peacefully... that is, all except Nicola. She is wracked with pain tonight and not settling well at all.

One by one they don't amount to much at all, but after a hundred little reminders every day, it gets frustrating. Even something as simple as meal times. Because I make all the food for the girls, I defrost a container of baby food every night for their dinner. I make sure it's warm, add a splash of extra water and grab a spoon for Alyssa... then I have to get a tube and a syringe for Nicola because she can't eat.

I know that I should be grateful for the fact that she is healthy and relatively happy and she is doing well, all things considered... but it is so hard seeing her so far behind her sisters, and they are growing more and more aware of the things that she cannot do, especially Jessica.

Last term, at school, I took Misty in for Jessica to use for show and share, so I had to sit through prayer, at which Jessica was prayer leader. (So proud of my baby girl!!). I sat and listened as their teacher read the story of Jesus healing the lepers... and Jessica waited through the whole story with such a contemplative expression... then she jumped up and ran over to me and gave me a big hug and she said "Mummy, all my friends little sisters can run around and play with them... all except Nicola."

I nearly cried.

But then she turned around to me and said "It's ok Mummy. I am going to pray extra hard today and I just know that if I pray extra hard Jesus will make Nicola better, just like he did for the lepers, so she can come and play with us like all my friends little sisters."

How can you respond to that? How can you possibly formulate any kind of a response?

I long for the day that excepting Nicola will no longer be something that we do... because when we sit on the floor and play, she will sit beside us. When the girls run around and race, she will run with them. When I get out dinner, she will eat with us.

I know that that day will come... I just wish it would come a whole lot sooner.

Is it wrong that I wish she was 'better' and able to participate more with her sisters?

Does that mean that I don't accept her for who she is?

*sigh

I really hope not.

:(

If Life Were A Movie...

2011-09-20T20:08:00.001+10:00

If life were a Hollywood movie, how much would things change? I sure as heck wouldn't look like me... women like me don't get cast in leading roles, so I would inevitably be skinny and gorgeous and probably blonde as well. I would have a lovely clean house with matching furniture and a nice green landscaped garden. Oh and I would have a dishwasher! I would have a nice shiny car and a healthy bank balance and I would be able to sing from the hill tops because I would be so happy and everything would be so wonderful... and there would always be a happy ending...

Yes, if my life were a Hollywood movie I would not have to deal with watching my child suffer and struggle through life every day.

This is my life, my every moment of my every day. This is my daughter, and this is her reality, and her reality is my heartbreak.

I have blogged previously about the loss of dreams that come with having a child who has special needs... Some days I still struggle with the fact that my child will not have a 'normal' life... but then, it occurred to me... I will inevitably have to take that one step further... I will have to live through every parents worst nightmare.

When you have a child it is unfathomable that your child will die before you. It is not the natural order of things and it just simply isn't intended to be done that way.

But it doesn't matter how long Nicola lives, how healthy we keep her, how much medical intervention we can achieve... it doesn't matter what we do, the simple fact of the matter is that one day, perhaps not tomorrow or next week, or even next year... but one day, I will have to bury my child.

Now some people are going to be shocked by that, or get upset with me, or perhaps even get offended... but please don't.

You see, it is an inevitable outcome for us, and I realise that now... I can't change it... I might be able to delay it, but I can't change it... and while I'm not ok with it - and I never will be ok with it, knowing that one day it will happen gives me the determination to live for today.

So that is what I do... I live for today. I play with my children, I make them laugh, I tickle them and cuddle them and read them stories... I create memories, not only for myself, but for my family... I put on a brave face, I hide my tears and I move on.

But all the while, despite the laughter and the happiness, now I cannot forget... and it's the not being able to forget that is killing me the most. I haven't been able to find a way to deal with this emotion, with this fear, with this grief...

The thing I find the hardest is that it is a feeling that isolates me and again sets me even further aside from my friends and family who just don't get it, who don't understand what my future holds.

How do you cope with something that no one else will talk about? That no one else can see or understand?

What is there to do other than anything that is within my power?

My dishes may not be done, my house is a mish mash of mismatched bits and pieces, my bank account balance is less than zero... but every night my children go to bed happy... we take photos, we paint pictures, we write stories, we create memories every day... memories that will, hopefully, last a life time.

We cherish every moment and live for what is right here and right now. Bring on the rainy day so we can go dance.

"Any good that you can do, do it now. Do not delay or forestall it, for you will not pass this way again."

My Wish List

2011-09-15T14:37:00.000+10:00

The things I want...

I joke almost every day about the things I want... I want a million dollars, I want an extravagant holiday, I want a big house, I want new furniture, I want a new car, I want a cook, I want a cleaner... I want a lot of things in my flights of fancy...

But in my heart, I only want a few.

I want a good camera - to be able to record the moments as they happen, to make the memories that in years to come we will look back on and smile, remembering the happiness and love in each and every moment.

I want a holiday - not an extravagant expensive overseas venture, but a nice family holiday... something to show my other children that we can be like other families, that we can go away and do normal things, that our lives don't revolve around the hospital and a never ending barrage of medical and therapy appointments.

I want $4186 - to be able to pay for and bring home a Kidwalk for Nicola to try and get her learning to walk. We put her in one at therapy to trial it and she took two steps... which was the proudest mumma moment of my life! We have so far paid close to $1800 on it, but there is $4186 to go before we can take it home and actually use it.

And that's it.

In the immediate here and now, if I was granted three wishes tomorrow, those are the three things that I would ask for.

Is it really asking for too much??

Happy 3rd Birthday Princess Nicola!!!

2011-09-05T19:24:00.003+10:00

Sitting here, it is so very very difficult to believe that my beautiful baby is three years old. It is hard to believe that we have been fighting this fight for three years, and that she has survived the insurmountable odds that have stacked up against her.

The pride I feel now when I look at her is unbelievable. It surpasses anything that I ever thought was possible. Right from the very beginning she has made it very clear that she would do things her way, in her own time, when she was good and ready... and if that doesn't suit the rest of the world, then that's just too darn bad.

She has proved that she is strong and brave and smarter than people give her credit for... and that she is capable of miracles.

I have thought all day about what I was going to say in this blog entry, and I was going to do something big and deep and meaningful telling you who much I love her and how special and wonderful she is and how amazing etc...

And now that it's time to write it, it has occurred to me that I don't need to say any of that... because anyone who knows me knows how much I love my daughter, how special and wonderful she is and how amazing she is...

So I am just going to say this...

Nicola, you have turned my life upside down, inside out and back to front. You have taught me fear that I didn't know was possible, determination I didn't know I had... you have brought out a sense of humor that is almost macabre at times, and you have pushed my sanity to limits I didn't know existed...

But despite all that, I love you.

I love seeing the way you interact with the world, the way your face lights up with delight when you see something that pleases you, the way you communicate to tell us what you want. I love seeing the little things you do that surprise us every day... like today when you said 'cake'.

I love sharing every achievement you make with you, I love being there, watching you grow and learn, and watching the self awareness grow within you.

You drive me to the very limits of insanity, you reduce me to tears, you make me utterly crazy with frustration, but every second I get to spend with you is worth it.

I have been blessed to have you in my life and I hope that that blessing will be very long lived.

You are my heart, my soul, and my world. You, baby girl, are my everything!

Happy Birthday Sweet Princess.

An Apology

2011-08-04T17:05:00.000+10:00

Yesterday, as we do every Wednesday, we attended my daughter's school for assembly. After assembly we were walking back to her classroom with Nicola in her wheelchair. She was excited after all the singing and clapping so she was waving to all the kids and saying hi to everyone.

Two little boys from the year one class pointed at Nicola and loudly proclaimed that she was ugly and looked like an alien.

Naturally, Jessica got upset and retorted with "She's not an alien, she's a baby!"

So these two little boys called Nicola an ugly baby alien and started carrying on, trying to push each other into her chair saying "Don't touch the ugly baby alien! You'll turn into an ugly alien too!"

Jessica got upset so we stopped and had a talk about how they were just naughty boys and that they were being mean and it wasn't very nice of them.

One of the teacher's aides in her class room overheard my conversation with Jess and asked me what happened, so I told her.

She immediately shook her head and got a bit cranky and said that she would take care of it, and she walked into the class room after them.

She came back to me while we were waiting for Jess to finish afternoon prayer and told me that she had had a chat to the teacher and the two boys in question and that she had made it clear that their actions were not acceptable and that both their parents were going to be informed... and that it would be raised as a class issue (and further a school issue) the next day (which was today).

I didn't think twice, and didn't expect to hear anything more about it... until I got to pick Jess up this afternoon.

Apparently she was taken across to the boys class room today, and they stood up in front of the class and apologised to her for being mean and presented her with a card to give to Nicola.

Apparently it has gone beyond the class room and into the rest of the school with talks on acceptance being delivered everywhere.

I am surprised... surprised that the actions of two small children carrying on has been dealt with so swiftly when I fully expected it to be brushed under the rug as 'boys will be boys'. I am surprised that it was dealt with in such a broad fashion, rather than being confined to the children involved...

But most of all, I'm hopeful that perhaps those two little boys might think twice before being mean next time. Even if they are just little kids, it's never too early to learn about acceptance and how being mean can hurt people's feelings!

My Journey

2011-05-22T11:43:00.004+10:00

Someone recently said to me that disability is a great equalizer... no one is immune, no one is exempt, disability treats everyone the same...

But does it?

Disability doesn't discriminate, no... that much is true... but it also doesn't equalise.

A person who deals only with an intellectual disability cannot truly understand the life of a person living with a physical disability. A person who has a child with a disability, but has been blessed with relatively good health cannot truly understand the life of a person dealing with complex medical issues, or what it's like to go to bed every night wondering if their child will still be breathing in the morning... and a person who deals with a known and understood disability cannot truly understand the isolation and loneliness of dealing with a disability that is rare or even undiagnosed. And of course, vice versa.

Yes, as parents caring for children with special needs and disabilities, we are united by a single similarity, yet divided by our differences, and it is the division that seems to be a note of contention.

The Federal Government here has announced a new funding structure for children with disabilities, supposedly an attempt to give them a better start at life... but only if you tick one of their boxes. If you have Down Syndrome, Cerebral Palsy or Autism, you can get the funding. You can also get the funding if you have visual or hearing impairment... but if you don't, it's like your disability isn't important enough.

If you have Down Syndrome, Cerebral Palsy or Autism, you can get support... but if you don't, you go it alone.

They are the 'Big 3' or the 'Popular Kids' in the disability playground.

Don't get me wrong, I do not dispute for an instant that they are relevant disabilities, I don't dispute that they are very real and they come with their own complex problems... but I can see why they are the Big 3. Just in numbers alone they account for the largest portion of disabilities in Children in the country.

And for them, that's great... it really is... they have the numbers for the support and the funding and the interest and everything else...

But what about for those of us that don't tick one of those boxes?

What about those of us who dare to be rare?

Where does it leave us if we can't conform to a predefined standard?

Out in the cold... alone, and very lonely.

Sure, the parents of this kids understand what we're going through... they understand some of the complexities of dealing with a child with special needs... but they never really 'get it'.

They don't get how frustrating it is when those of us left behind miss out on opportunities for our kids because we don't have the right diagnosis. They don't understand the frustration that we have when we have to fight for everything that little bit harder because we don't tick a box.

But, I guess, at the end of the day, that is all part and parcel of this life. We are dealt with our own struggles, and they are our struggles to endure. If we are lucky, we have someone to share the journey with... if we are not so lucky we take the journey alone... but either way...

It is a journey that will make me wearier physically, but stronger emotionally... It will take me away from my friends and family, but make me closer to God... It will try my patience and fray my nerves, it will grate my feelings until I am raw and vulnerable, and then it will reward me in ways that I never expect.

It is a journey that not everyone else will understand because they don't live it on a daily basis... they don't deal with my confusion, my struggles, my isolation... they don't deal with the medical complexities and fears... it is my journey... one that I think I am destined to take alone...

And I am ok with that... I really am.

Vocal Ignorance.

2011-05-01T11:29:00.000+10:00

I believe in many things... I believe in God, I believe in Religion, I believe in Science... I believe in freedom of choice, gender equality and I believe in same sex marriage... Above everything else I believe in a person's right to respect for their beliefs and choices.

But for as long as Nicola has been a much beloved part of our lives, we have met a certain amount of adversity and sometimes animosity from some other people. I have known for a long time that there would always be people who wouldn't agree with our choices.

But, to be honest, I never thought I would find someone who would disagree with our choice to keep Nicola alive.

I'm not naive, I always knew there would be people who would argue that her quality of life was not good enough by their standards, or who would think that the pain that she lives with, or the constant medical issues would not make her life worth living...

Yet, to be honest, I never thought I would find anyone who would not only express their opinions quite vocally to my face, but argue the point with me when I politely tried to disagree...

And that is exactly what happened on Saturday night... in front of all my family and several close family friends, at a celebration of love and happiness (my parents wedding anniversary).

My new next door neighbour came over to have a drink with us. I We had met on a couple of occasions beforehand and she has always appeared somewhat nice... yet Saturday night, just out of the blue, she asked me straight to my face why I bothered to keep Nicola alive.

The silence was like nothing I have ever experienced before... and the tension was palpable as every single person there turned and looked at me and waited for me to respond... which was really hard considering that the only response I really wanted to form was a string of obsenities followed by a flood of tears.

Instead, as calmly as I could, I told her that I didn't feel anyone else had the right to judge what quality of life is considered acceptable and that I felt that, despite her pain and her medical needs, Nicola's quality of life was actually quite good and that she was generally happy in the life that we provide for her.

Her response?

To tell me that her dogs are like her children now that her own children are grown and moved on and if it got to the point that her dogs couldn't run or play or do the things that SHE felt were important, she would have them euthanised... and she would do the same for her children.

She argued repeatedly for a good 20 minutes that a life that isn't 'normal' isn't worth living and we should not persist in our desire to keep her alive when her quality of life is not acceptable.

I don't understand this argument... I never have been able to. I struggle to find any reason, logical or emotional, that would give any person the right to take the life of another. I am not God... that choice is not mine to make... I am just a mother.

She is my child... she is my flesh and blood... and I will fight for her life with my last dying breath.

What kind of mother would I be if I turned my back on her just because she doesn't conform to what a bunch of mindless morons incapable of an iota of free and independant thought have deemed to be considered 'normal'?

What my neighbour said hurt. It really hurt... And I know that what she said, even though she probably didn't think there was anything wrong with it, hurt not only me, but my family and friends, all of whom love Nicola deeply. It hurt to think that anyone could possibly look at my daughter, see her smile, see her laugh, see her interact with her sisters and her family, and tell me that her life is worthless. It hurts that anyone could think that any child, regardless of their abilities or needs, is considered less important than any other child, or worse, that they are considered replacable.

Of course, she single handed pretty much ended the party... after that there wasn't much more to be done... I think everyone was a bit stunned. I walked inside and sat in Nicola's room, just watching her sleep.

Now... in the light of a new day, a good day, I know that it doesn't matter what she thinks. Her words may hurt, but I can chose to ignore them, which is what I am going to do from now on. I am not that desperate for a couple of free haleconia's that I would tolerate that kind of ignorance... instead I will chose to continue as I have been doing... to focus my time and energy on giving my children the best possible life I can give them... each and every one of them.

Early Release

2011-03-07T21:17:00.000+10:00

Well... all I can say is that it's been an interesting week... but at least it has a happy ending!

We are home!!!!

Nicola's behaviour and tantrums deteriorated so badly over the weekend that Sunday ended up being a 13 hour temper tantrum because she didn't want me, she didn't want Aunty Kathy, she didn't want to sleep, she didn't want to be awake, she didn't want to play or read or anything else, she just wanted Daddy, and Daddy wasn't there.

We went back to the ward this morning, intending to argue our way to early release and to go home because Nicola just wasn't coping with it all mentally, she was not at all in a good place.

I was determined, there was a Qantas flight at 7pm and I was going to be on it, with or without their blessing.

Thankfully they had a modicum of common sense and a quick discussion about the situation with the added knowledge that we live only a few minutes from a major tertiary hospital meant that they agreed to let us go home. We got onto the 2pm flight and we were gone!

I don't remember the last time I saw her so glad to get home and to see her Daddy and her sisters, and most importantly her own bed!

So now we have to watch her sooooo closely for the next week for any sign of a post surgical bleed because that would most likely mean an instant flight to Brisbane, which I really do not want to do.

Thankfully, at least for the moment, we have no further surgeries on the horizon so I think it's time that we start looking into moving more and more of her medical care back to Townsville so that we can avoid more of these trips away in the future as much as possible!

Never a dull moment!

2011-02-23T14:14:00.001+10:00

In true Queensland Health fashion, we have our next surgery date...

Next Tuesday.

Nothing like a last minute theatre booking to fill your weekend with a dash of chaos and a good healthy splash of manic panic!

They finally managed to get her a booking to have her Tonsils and Adenoids removed... We've only been waiting since October when she had her horriffic sleep study done! I thought it would have been done quicker given how bad the results of the sleep study were... but I guess they had other ideas.

Never a dull moment!

When it rains, it pours! Literally!

2011-02-19T11:44:00.001+10:00

Wow... what a whirlwind of a week!

I spent 2 days in hospital after Alyssa was born while they investigated her and did all kinds of blood work because her haemoglobin was too high and her billirubin was high and they were worried about some kind of blood incompatibility.

We finally got the all clear on that and got her home Sunday night at about 9pm.

Monday morning, much to the glee of her big sisters, she got dressed up and taken to two different schools for 'Show and Share'. Of course, they had to help choose her clothes and dress her, which explains how she came to go to school wearing a white frilly body suit, a pink pettiskirt, little pink mary jane socks and with a big pink band and rosette in her hair. They were delighted.

By Tuesday things had gone downhill. I was in a lot of pain and could barely walk let alone do anything else and I had a blisteringly high fever. Michael rang nurse on call who told him that I had to present straight to the emergency department, who promptly put my in a bed and gave me copious amounts of morphine to help cope with the pain while they called in the surgeons for suspected appendicitis.

24 hours in hospital and I got released... not because I was better, but because there was a MASSIVE, and I do mean MASSIVE cyclone headed directly for us.

We drove home through the first lot of winds... it was so eerie... there were so few cars out, all the shops were closed, and there was just this air of impending doom everywhere we went, which was quite a few places because we were chasing an open pharmacy to get my antibiotics and pain killers.

The cyclone hit Wednesday night. Within two hours there were almost no trees left in our street, we had no power and the sound of the windows shaking was creepy!

The devestation left behind by the cyclone was awful... but we were so lucky! In the grand scheme of things, we only spent 9 days without power and we only lost a few windows and the side gate and a section of fencing... and my computer. The house across the street was demolished by a falling gum tree... but our town wasn't that hard hit.

The cyclone turned at the last minute and crossed the coast north of us, devastating a massive region of coast.

And then it was Valentines Day and my Birthday, both of which passed with pretty much no celebration because of sick children and medical stuff.

It's been crazy... but the craziness has made me realise how lucky we really are. No matter what happens, I have a family that I love and who loves me. I have been blessed with four beautiful children and a husband who is amazingly supportive and helpful, most of the time.

With all of that... given everything that has happened in the past two weeks, with people losing their homes, their lives, and their loved ones, what right do I have to complain?

Sugar & Spice

2011-01-29T09:40:00.000+10:00

Born Friday 28th January at 5.25pm

2 weeks and 2 days early.

52cm (20.8 inches) long,

37cm (14.8 inch) Head Circumference, and;

Weighing a beautiful 4.21kg (9 pounds 4 ounces).

Perfectly healthy in every way!

A beautiful baby sister for Jessica, Isabella and Nicola.

The Light at the end of the Tunnel

2011-01-18T18:45:00.001+10:00

So today I had a complete and utter mental freak out. I was struck with the realisation that in a few weeks, give or take, we're going to have another baby... another little defenceless being that will be relying on us entirely for every aspect of her care...

And to be honest, that thought scared the bejeezus out of me... and I wasn't sure if I was going to be able to cope with the demands of two babies at once... especially one with additional needs, like Nicola.

I phoned Disability Services... after all, they're supposed to be able to help. Their website even says so!

"The Department of Communities (Disability and Community Care Services) helps people with a disability and their families to access the support and services they need as they move through the different stages of their life."

Sounds great... right?

Sounds simple?

Of course, being a government agency, it could never possibly be that easy!

It turns out that being up here, we are in a black hole of services and support. We have excellent medical care in most aspects, primarily paediatric, but everything else has lapsed by the wayside.

If we were still in Brisbane we would have all the support we could possibly need. We had agencies that we were registered with who would organise everything we needed... even down to a cleaner to help clean my home if we needed it.

Here, I can't even get 5 minutes of respite care so that I can go to the loo by myself during the day!

Ok, so technically that isn't entirely true. As the ever so helpful lady explained to me on the phone today... There is help available... if I am willing to play by their rules... and according to their rules, I have two choices.

I can sign a statement declaring that I am a danger to my children and they are at risk of harm in my care, at which point we will come under investigation by Children's Services...

OR...

I can surrender my child at one of the specified locations. I can surrender my parental rights for up to two weeks without legal prejudice.

It's really that simple huh?

And with a wonderfully straightforward legal system such as this one, that offers so much support to the families who need it most, people wonder why carers of disabled children find themselves at breaking point and do stupid things?

Seriously... the mind boggles!

Needless to say, I declined their very generous offer. One way or another, we will cope with whatever is to come... we have no help... we have no choice.

Farewell 2010

2010-12-30T21:15:00.000+10:00

A Moment of Reflection.

Well... 2010 is almost over... and looking back, it's hard to believe we have had such a HUGE year... and how much things have changed.

We are finally getting a handle on her health care... we have a wonderful paediatrician who is not only available to us when ever we want/need him, but he is willing to listen to us and work with us... her therapy teams seem to be pretty on the ball with things, and all in all, things are moving forward.

It's comforting, considering that at the start of the year the decision to move back home was made more on a basis that her health care certainly couldn't get any worse than what she had in Brisbane...

It's great seeing Nicola opening up to new people and allowing more people into her circle, even if they are only family. She is finally opening up to my Dad and willingly lets him hold her now... a far cry from the child who, a year ago, wouldn't even let anyone else look at her.

I can only hope now that next year is even half as kind to us as this year has been!

Farewell 2010... Welcome 2011!

A Scrooge Moment...

2010-12-19T14:53:00.000+10:00

I am discovering that I seriously hate this time of year... it is nothing but a constant reminder that my daughter is not like everyone elses. Every day is a new slap in the face, and I hate it.

I hate it, I hate it, I hate it, I hate it!!!

I have spent 8 weeks trying to find something for Nicola for Christmas. I was lucky and scored some new clothes for her on sale, which she desperately needs... but looking for that really awesome Santa present... and nothing is suitable! I don't want to buy her 'yet another' baby toy because she isn't a baby! She's nearly two and a half years old dammit! I don't want to buy her another rattle, or another teething ring, or another stupid play mat! I want to be able to buy her something that has a bit of wow factor... instead, the best that I can come up with is a Big Red Car to go with her Wiggles toys that she loves...

And then, on top of that, is the constant need to keep reminding family members of what she can and can't use, again highlighting over nad over that my child is different to my nieces and nephews. My sister wants to buy her a jolly jumper and doesnt' seem to listen to me when I tell her that Nicola's hips are not stable enough to put her in a jolly jumper! That's why we had to stop using her bouncy round about thingy! The pressure on her hips was too much! Not to mention the fact that she doesn't have enough control over her body as a whole to use the damn thing, least of all on the trampoline where she expects her to use it!

And don't even get me started on the Christmas parties... I mean... to start with, there is the fact that I am constantly being asked questions about why she's so small and why she doesn't walk yet and why she doesn't talk yet and why she isn't like her siblings or her cousins... then, on top of that, there is the fact that everyone insists on scheduling their Christmas parties at night.

Nicola is in bed by 5.30pm! I have tried to explain that over and over but if I say I doubt we will be able to attend, I get made to feel like the worst family member in the world... so out of guilt I end up going, knowing full well that it means an absolutely horrific night for me because I'm stuck in the corner on my own trying to comfort a screaming child who is stuck in cyclic meltdown mode because she has been taken out of her comfort zone and out of her routine, not to mention that these parties are full of people she doesn't know which scares her, and they're generally noisy, which makes her head ache. Plus it is insanely hot and humid here and her poor little body just really cannot cope with the heat at all...

Then I have to put up with people talking about how she cries so much and she is not the bright and happy baby that her sisters were... Well, newsflash... WTF do you expect?!?!?!

When we finally do get her home, she's so out of whack that the few hours of misery we spend at the party means that she is completely beside herself for days afterward!

I am sick of it! I don't want to do Christmas any more!!!

I normally love Christmas, I really do! I love the whole season... but this year, I'm just over it. I am over the constant reminders of how different my life has become. I love my daughter, I wouldn't change her for the world... but this Christmas is just making me totally and utterly miserable.

Christmas really does bring out the worst in people! It is certainly bringing out the worst in me!

Home Sweet Home...

2010-11-27T08:51:00.000+10:00

WE ARE GOING HOME!!!

Nicola's surgeon came in this morning... he told me he was not prepared to discuss her recovery, lest he jinx what is happening... but he has us booked on the 11am flight and we're going home!

Woohoo!

4 days post surgery and we're outta here!

Go baby girl!!!

Fear of the Known...

2010-11-20T23:22:00.000+10:00

There are a lot of different kinds of fear... but I think I am learning that the single worst kind of fear is fear of the familiar... or fear of past experiences.

People are afraid of all kinds of things... but to be afraid of something that you have already experienced is a palpable fear made even stronger by the fact that you already know how horrific the experience is...

And this is the position that I find myself in now... I am afraid of reoccurance.

In September last year Nicola had to have surgery to have a gastrostomy button put in, and while they were in there they did a fundoplication. The gastrostomy was fine, there were no problems there at all... but because of an already weakened oesophagus, one tiny little stitch pulled... and that tiny little stitch nearly killed her.

When it pulled it tore her oesophagus and filled her plural cavity with air and fluid, collapsed both of her lungs, gave her pneumonia, and caused an infection so massive that she needed to be taken into theatre every other day to have them surgically clean the infection from inside her chest... that was on top of the two intercostal chest catheters that she had had surgically inserted to help stuff drain away.

She spent many many weeks in intensive care on life support hovering on the brink of death before she made a slow but steady recovery... months in hospital before we finally got to take her home again...

And then a couple of months after she was discharged, she developed a giant paraoesophageal hernia through her fundoplication... and we were given the news that the surgery had to be done again.

To say I am scared is an understatement.

It has been a year and I still wake up at night hearing the sound of the ventilators alarming on her ICU bed.

I can still remember how it felt to have the entire team of ICU doctors descend upon her bedside to tell me that *IF* my daughter survived the next 12 hours, then we would talk about what to do next... but it would be best to bring my family down now to say goodbye.

The thought of going through all that again... living just to get through every single hour and never knowing what was hovering on the next horizon... the thought of going through it again is a faint cold fear unlike anything I have ever experienced.

I do NOT want to do it... I do NOT want to risk it... but at the same time, I know I have no choice...

How do you prepare for something that may quite possibly kill your child? How do you willingly hand them over to the anesthetists, not knowing if you will ever get to hold them again... to look into those beautiful eyes, to savour sweet kisses and warm snuggly cuddles...

How do you go through with it when every fibre of your being demands that you run as fast as you possibly can in the opposite direction?

Well... I guess I will find out on Tuesday...

A Step In The Right Direction

2010-11-20T14:49:00.001+10:00

Well... go find the biggest hugest piece of the solidest wood that you can find and let me touch it!!!

Because... touch wood... she came through the surgery well!

Her surgeon seemed very pleased with everything. She was out of theater and into recovery quicker than they expected and we only had a short stay in intensive care before being moved to the ward.

She has been having some troubles with post surgical fevers and they've done xrays and blood tests and so far everything seems to be ok... our biggest hassle is pain relief. They have her on some pretty hefty doses of morphine as well as paracetamol and some other stuff and none of it seems to be making much of a difference.

It's horrible watching her because she doesn't settle, she doesn't sleep, she doesn't want to eat, all she wants to do is to cry and fuss and scream.

The acute pain management team has been called in again and we're waiting for them to come and see if she can be given more, or something else that may help her calm and sleep.

They managed to use most of the incision points from the last surgery so she only has one new scar... which is a good thing for her, although somewhat superfluous considering how many other scars she already has on her poor little body.

But, all in all, I am really pleased with the position that she is in now... it is a hundred times better than what we had anticipated!

Now we just have to wait and see if she keeps up the amazing work!!!

The Terrible Twos

2010-11-12T13:43:00.000+10:00

Being a mother to both 'normal' healthy children as well as a child with complex special needs, it gives me a bit of an insight into a world that can sometimes be very confusing and very confronting. I must confess that it is somewhat heartbreaking when I look at Nicola, who is now 2 years, 2 months and 11 days old...

I can't help but to compare her to Isabella, who at that same age, just last year, was astounding hospital social workers with her vocabulary skills, her ability to count, recognise colours, recite nursery rhymes and hold conversations with anyone around her... who could run and jump and skip and hop and dance...

And then I look at Nicola, who is non verbal and immobile.

She tries, I know she tries... she has audible sounds that she makes, some of which possess wordlike qualities and intentions, some of which are just babble... and she has her Makaton... she communicates effectively with us, because as her parents, we know her best... but the second anyone else is around, she clams up and goes back to her preferred method of communicating with the outside world...

Crying.

But, then, at the same time, there are moments that I am utterly thrilled that Nicola is who she is... like when her big sister Jessica, who is now 4.5 and quite the little Miss, gets her attitude on. She's taught Isabella well and when the two of them mouth off at each other, I can't help but to look at Nicola and smile.

There are times when I am grateful for the fact that she is developmentally delayed... I can revel in the knowledge that she will always retain a little bit of her innocence... that she will always be my sweet little baby girl...

And on those days, every now and then... she likes to surprise me.

Having a particularly bad day with the big girls who were tired and cranky and fighting each other, as well as fighting me, at every possible opportunity, I must confess that I was relieved that Nicola had woken up from her nap. I put ABC Kids on for the big girls and left them to go square eyed for a little while and went into her bedroom, scooping her up from her bed and smothering her in kisses, savouring the sweetness that is my beautiful little baby girl.

Bringing her out onto the lounge, I laid her down on the couch and sat down with her to have a chat and some tickles while changing her nappy, as we always do... and immediately she flipped over onto her side to watch The Wot Wots with her sisters.

I turned her back onto her back and within a second she had flipped herself back to the tv again.

I said to her; "Excuse me, I'm trying to talk to you!"

Her response?

She cast me the most withering look you could possibly imagine and immediately held out her hand.

Her communication was clear.

"Stop."

I guess it just goes to show several things...

* A mother can never lure attention away from The Wot Wots...
* Attitude can assert itself at any point...
and finally...
* Even developmental delays aren't enough to keep the terrible two's at bay!

Sleeps Not So Sweet.

2010-10-30T14:47:00.000+10:00

So... Nicola finally got her sleep study...

What can I say?

Other than... not at all what I expected!

We flew down that morning and transferred across to the Mater Childrens Hospital where we did all the admission stuff and sat down and spoke with the ENT specialist about her syndrome, her medical history etc.

At 4pm they gave us an hour of reprieve so I was going to run across to Subway to grab something to eat, but I ran into her paediatric surgeon in the hall who wanted to talk to me about Nicola's hernia and the surgery she needed for that.

Thankfully I did manage to grab a quick bite after talking with Craig otherwise it would have been a REALLY long night!

At about 5.30 we gave her a bath and they hooked her up to all the monitors and then I put her into bed.

Honestly, I didn't expect them to find much of anything... she had a BEAUTIFUL night's sleep! If she slept like that at home I would be a very very happy Mumma! I even rang my husband at home and told him that she was sleeping so well... no snoring, no gasping or choking, nothing... just a nice night's sleep!!

The next morning, after *I* tossed and turned all night long, the ENT specialist came in and had a chat with me.

I told him that she had had what I thought was a brilliant night and how it was so typical of her to have a good night's sleep when I'm trying to prove how bad she usually is.

He was amazed.

Medically, her sleep study was a disaster. He said that in the 12 hours she was connected she achieved less than an hour and a half of actual deep sleep. She stopped breathing on average of every 3 minutes or so, and through the whole night, her entire oxygen saturation levels rarely rose above 80% and she had constant nasal obstruction.

He thinks her tonsils are far too big and are obstructing her airways through the night and that her adenoids are permanantly blocking her nasal passages.

For the first time ever I have been taken completely and utterly by surprise when it came to the results of a test. Normally I have been the one pushing for testing because I felt there was a problem, but this time I was sure they wouldn't find anything!

So now the grand plan is to go back to our ENT specialists at the Royal Childrens and get her put on the waiting list for T&A surgery. After the surgery has been done they will give her a few months to recover and then do another sleep study and see if there has been some improvement. If there hasn't, then they will have to refer her to other specialists for more tests to be done.

*sigh

I am the child...

2010-10-15T10:28:00.001+10:00

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown.

I will love the light...

2010-10-05T21:00:00.001+10:00

Since Nicola’s birth, I have found that in the moments that I need the reassurance and comfort most, it comes. Usually from the strangest of places, but it comes. When we first got her diagnosis, I was sitting at my computer one night, trying not to cry as I tried to write my first introduction to the support group mailing list… and the mail icon appeared on my screen telling me that there were new items in my inbox. One of them was one of those random spam letters. Most people with email know the ones I mean… they have a random convergence of bizarre words and quotes amongst them which are supposed to get them through SPAM filters?

Well, this one appeared and the first line read; "I will love the light for it shows me the way. Yet I will endure the darkness for it shows me the stars..."

That has been something of a mantra for me since I started on this journey. I love the light, it shows me where I am going and where I have been… but in the darkness there is a beauty that you can’t see in the light. Sometimes you need to look a little harder to find it… but it’s there. Maybe it’s in the form of an unexpected friendship, or a once in a life time opportunity, or a trip, or something. It might be taken under the cloak of darkness, but there is beauty there if you look for it.

But, on the flip side… sometimes the light is just downright harsh and you find yourself wishing for the cover of darkness to shield you from the things that you don’t want to see.

Like just how unfair and how unjust this life can be sometimes.

Our most recent endeavour has been to try and source funding to buy Nicola a wheelchair and a standing frame.

Well… seriously… with how difficult it has been, you would think I have been asking to have the moon repainted to purple!

Weeks of phone calls and appointments and talking to people until I’m blue in the face… explaining the same story over and over and over, until it gets to the point that you just want to carry around a voice recording and press play.

But where I’m really starting to fail in understanding is the way that funding is allocated.

See, to me, in a utopian society, it would be simple. Funds for services/equipment/needs would be allocated on a ‘needs basis’. It would make it really simple. If you have a genuine need for a certain piece of equipment or a certain service, you would say “I need this.”

Then they would look at the justification, nod in agreement and say, “Yes, you need that. Here is the funding to cover it.”

Of course, I understand that it wouldn’t cover every need, but rather on a ‘greatest need’ basis.

Which is why I struggle so much to understand how it is that certain individuals with widely known conditions are able to get funding for items like iPads, while other individuals with differing conditions, struggle to get even basic access to funding for life essential items, like a wheelchair.

I really, simply, just don’t get it.

It’s almost like the popular kids are getting the cool stuff, while the rest of them are begging for the dregs that are left over.

I guess it’s just another way to prove that we don’t live in a utopian society, but rather a dysfunctional capitalist society. S/he who has the dollar has the power.

And this is so painfully and abundantly clear in our medical system. It truly is user pays system for anything that comes even close to resembling quality of service.

The bleached blonde barbie up the street with more dollars than sense can go book herself in for a new set of boobs or a new nose, or hell, even longer legs! She can get it done as early as next week if she pays enough for it…

All the while, sick, frail, disabled and elderly are suffering and even dying from lack of access to proper medical care. Waitlists are horrendously long, services are inaccessible and support is almost unheard of… and politicians really just don’t care. And it’s something that will never change.

So yes… sometimes the light isn’t all it’s cracked up to be. The light can make the days seem impossible to deal with… can make targets seem impossible to reach… can make everything seem that much harder to deal with, that much more isolating and that much more lonely… and makes it seem even more apparent that there are very, very few people in the disability services sector, especially those creating the red tap who possess an iota of common sense or understanding!

So that’s my whinge for the moment. But I just need to remember, that it doesn’t really matter. In the grand scheme of things, it’s just a little setback and it doesn’t really change that much. We will accomplish what we set out to achieve because we are determined and we will get what we need because we have to. That doesn’t change because a couple of politicians somewhere are idiots. Sure, it makes it harder, but it doesn’t change anything.

We will succeed because we our daughter depends on us.

Another Amazing Experience.

2010-09-17T22:35:00.001+10:00

We have been extremely blessed in our lives in so very many ways, but at the moment, the most poignant to us is that we have the love and support of family and friends which has allowed us to accomplish some amazing things for our daughter.

When we were first given Nicola’s diagnosis, I felt that my world had been shattered… I couldn’t even talk about her without dissolving into tears and if anyone asked me about her diagnosis, I just couldn’t handle it. It was too much.

Then we made the decision to go to our first conference, which was an incredible 10 weeks after we got given her diagnosis. After two weeks of procrastinating and crying and deliberating, we came to the conclusion that if we were to accept our daughter’s diagnosis and her future (what little we knew of it), then we would have to go to the conference, we would have to do everything that we could to get our daughter there to the people that knew best.

With 8 weeks to go, we turned our appeal public, starting with friends and family and ending up in the local media… and we succeeded. In 8 weeks we raised enough funds to cover two adults and one child to fly to San Francisco, spend a week at the conference, pay for our accommodation and meals and everything, and then come home.

The trip, although incredibly stressful, was extremely successful. The experience was absolutely amazing, and one that I firmly believe not only helped us on our path of discovery for her daughter, but in fact saved her life.

We learned several things during that conference, one of which was that Nicola actually had a clinical diagnosis of a Chiari Malformation which, apart from causing her constant and chronic pain, it was also affecting her breathing and her feeding and pretty much every other aspect of her life.

The sessions that we attended with the conference and the connections that we made gave us the power to return home and fight for better healthcare for our daughter.

But beyond that, it gave us a chance at social inclusion… to stand with people who understood and shared our journey.

We were lucky enough again this year, through the help of some amazing friends who helped us fundraise, and the Grace of my Father in Law who got us over the line at the 11^th hour, to be able to attend the first annual conference in the UK and the launch of the new international Rasopathies support group.

While again it was only a few days, it was a few days that have once more changed our lives. From a medical perspective, we had access to specialists and doctors that we had never met before who have had many years of dealing with Costello Syndrome in the UK, who were more than happy to sit down with us, one on one, and discuss Nicola and her health and her options. We learned about drug trials that will most likely be beneficial to stabilising some aspects of her health, and improving others. We learned a whole bunch more scary statistics and facts about our daughter’s future, some stuff that we didn’t necessarily want to know just yet, and some other stuff that is great to know, just to keep in mind when things happen and we need it, stuff like muscle contractures, tight heel cords, cardiac problems, neurological problems, skeletal issues, growth hormones, etc.

We got to spend ages talking to a mobility specialist and found out what kind of wheelchair we need to get for Nicola, so now all we need to do is to find the funding to buy one for her!

We also got to spend a few more days with the families who are walking this path with us… some of whom we had met last year in San Francisco, and some of whom we knew only over email. It was great to be able to put faces to names and meet some more wonderful children… it was also great to meet some of the other Rasopathies families (Rasopathies are other syndromes that are related to Costello Syndrome and come under the same neuro-cardio-facio-cutaneous syndrome banner. Many of the symptoms and treatments overlap. By grouping them together under one Rasopathies banner it increases the numbers and makes them more viable to researchers and for funding etc).

Nicola (and us) were invited to a lovely high tea at the House of Lords overlooking the River Thames which signified the launch of the new support group and we talked about the future, and we even managed to fit in a few hours of sight seeing in London!

All in all, it was another amazing experience, and one we are truly very lucky to have received, and one we are very, very grateful for. These experiences give us the strength and knowledge to fight for our daughter’s medical needs, as well as the social interaction to abate the loneliness and isolation that comes with dealing with such a rare and daunting medical condition.

We wouldn’t be able to do this without your support… so thank you.

From the bottom of our hearts, thank you for the opportunities you have helped to give to our daughter.

Today is your Birthday...

2010-09-05T22:20:00.000+10:00

My beautiful daughter…

Today is your birthday…

For two short years you have graced this earth with your presence... for two short years you have filled our hearts with a love that we never knew was possible… for two short years you have brought us light in the darkest of moments and hope in the ravages of despair.

If I could take away your pain and make it my own, I would. If I could fill the world with happiness, I would do it for you. I would walk to the ends of the earth and back again to make even an iota of difference in your life.

In the past two years, you have taught me more than most people learn in a life time. You have taught me, hope and faith… you have taught me compassion and understanding… you have taught me strength and humility… and you have taught me love.

Today is your birthday.

The anniversary to celebrate the day in which we received one of the most precious gifts we could ever have been given…

The gift of you in our lives.

Oh how I wish I had known…

2010-09-04T21:30:00.000+10:00

Two years ago today I was told that I was going to be having my baby in 24 hours. I was 34 weeks and 6 days pregnant. The radiographer and the obstetrician both assured me that the baby would be fine… after all, she was almost 11 pounds.

What could possibly go wrong?

Oh how I wish I had known…

I wish I had known that minutes after my daughter was born she would have a seizure and stop breathing. I wish I had known that the next 8 months of our lives would be utter chaos and turmoil as we flitted from one specialty to another, one admission to another, one complication to another, before everything culminated in a diagnosis that rocked the foundations of our world.

I wish I had known then how drastically our lives were about to change… that I would never again feel like a competent and able parent when it came to my daughter… that I would sacrifice everything for a better chance at life for her… that my older daughters would miss out on a normal childhood… that I would become an expert in medical conditions that I never knew existed, and had no desire to know about…

Oh how I wish I had known…

While in hindsight I probably wouldn’t have changed anything, perhaps it would have made me a bit more prepared… for the constant battle to gain access to a health system that seems to constantly shut us out… for the heartbreak I would come to feel as I cradled my daughter as she screamed from a pain I could not ease… for the loneliness I would feel as I walked this path, virtually alone… and for the fear I would come to feel every night as I fell asleep wondering if my child would wake the next morning.

Yes… two years ago today, I was told my life was going to change. I just had no idea how much.

Now… on the eve of Nicola’s second birthday and I look back over the past two years, and I can’t help but marvel at how far she has come. She has survived odds that have seemed insurmountable. She has lived with complaints that drive grown adults to tears, yet she does so with a brave face and a smile, because in her little life she has never known any different.

I watch her interact with her sisters, laugh with them, touch them, play tea parties and ponies with them, and I can’t help but smile. I watch her signing ‘hello Daddy’ or ‘hello Mummy’ and it fills my heart with happiness that I never knew was possible.

It is so confronting, seeing other children her age, or even seeing her sisters, and knowing that Nicola will never really be like that… but Nicola is… well… she’s Nicola. Nicola is different, and that’s ok… because that makes her who she is.

And who she is... is perfection incarnate.

<3

Communication

2010-07-22T14:41:00.003+10:00

Being the parent of a child who is both medically fragile and has special needs, it is sometimes really hard to see the silver lining in life. While some days things are great and you can smile and laugh and almost feel like a normal person, other days you just fall into a well of confused self deprecation where it seems there is no end in sight to the monotony and drudgery that has become your life.

It makes it all the harder when you are constantly seeing reminders of the life that you're missing out on... family and friends with their 'normal' children who are running and babbling and playing... and it really drives into your heart that your child is just not the same as other children.

Last Friday for instance... I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.

Given their close proximity in age it's only natural that the children are all friends and play well together... that is, all except Nicola.

Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn't even sit unaided. She doesn't talk, she doesn't walk, she doesn't run... and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.

Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.

Don't get me wrong, I don't begrudge their happiness with their healthy children. Not at all! And while I wouldn't give Nicola up for anything in the world or change anything about her, I wouldn't wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.

But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us... just when we need it most.

About a month ago we had a massive breakthrough in her communication... she looked at me and she said "Mum. Mum, Mum, Mum." Of course, to say I was ecstatic was the understatement of the century... until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers... and it wasn't really a word at all.

One step forward, two steps back.

Sigh.

But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.

Ok, so she's almost two. I get that... waving for a two year old isn't a big deal...

But for MY two year old, it's a mammoth step! It's phenomenal! It's more of an achievement than man's first steps on the moon or the discovery of the theory of relativity.

MY two year old daughter waved! She picked up her hand and waved! She communicated with me!

Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.

Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.

She responded to my waving to her by signing 'good waving' to me in Makaton.

She used her finger instead of her thumb, and it wasn't entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. "Good waving Mum. I'm proud of you!"

In Loving Memory...

2010-07-10T13:20:00.004+10:00

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

God looked around his garden and he found an empty place,
He then looked down upon this earth and saw your tired face.
He put his arms around you and lifted you to rest.
God's Garden must be beautiful, He always takes the best.
He knew that you were suffering, He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough and the hills were hard to climb,
So he closed your weary eyelids and whispered
"PEACE BE THINE".
It broke our hearts to lose you, but you didn't go alone,
For parts of us went with you the day God called you home.

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

In Loving Memory of Willa Clementine Hunt

An incredibly brave little Costello Princess who grew her Angel wings at the age of 2.

09-07-2010

Rest In Peace Princess
xxooxx

Take This Moment...

2010-07-04T20:16:00.006+10:00

Ok, so, again, I am just soooo not good at keeping on top of a blog. I think I have to accept the fact that I will never be one of those people who write something here every day. We have had so much happening of late... the last month or so has just been utterly chaotic.. but I will talk more about that later... maybe.

Right now, I want to talk about a friend.

This friend probably isn't what a lot of people would consider a friend. I have never stood in the same room as her, nor have I heard the sound of her voice. I have never held her hand or hugged her, I don't know what sports she follows or what music she listens to, but we share a common ground that is so deeply entrenched in our hearts and souls that none of that seems to be very important.

We both have daughters that are HRAS positive.

Our precious daughters are almost the same age, they even share some of the same traits... the same gorgeous smile, the same big eyes and the same sunny outlook on life... but that's about where the similarities in our lives end.

Tonight, as I watch my daughter sleeping in her bed and reflect on how far we have come and how far we have to go, my friend is watching her daughter sleeping and reflecting on the fact that her life is nearing an end.

You see, my friend's beautiful, precious little girl has cancer that cannot be treated and they have made the heart wrenching decision to let nature take it's course.

I cannot even begin to fathom the immensity of this decision, or the emotions that they struggle with on a daily, or even hourly basis, yet she does it with poise and grace. I read her emails and I cannot help but cry because even now, in her deepest hour of need, she is not only a friend, but a teacher, using her own pain to help guide others on this journey.

And with such a good and gracious person as a teacher, how can I not be a student?

Indeed, from her words, I have learned a great many things, some of which I already knew that have been reinforced in my heart, and some which are new words of wisdom that I am holding fast to.

I have been reminded that every moment is precious. We never know that is just around the corner. It is time now to hug my children, play with them, make them smile, make them laugh. Revel in the joyousness that is the foundation of new life, spend time with my partner and just delight in the little things that make us both smile.

I have learned to appreciate therapy and medications and doctors visits and all of the other stuff that comes with this life that I have had thrust upon me, for even though I may curse these things for being the bane of my existance on a day to day basis, but each time I curse these things I am also reminded that I have her in my life. I may despise therapy, but every day we do it is another day that I still have my daughter.

I have learned that even in the face of adversity that may seem impossible to overcome, I will find a way to get through. I have the strength and courage of a family with wisdom that spans half a century and encompasses the face of the globe, all of whom will be standing with me when I need them.

Nicola and her medical complexity may have turned my life inside out and upside down, and it may have challenged everything I ever thought I knew in my life, but it has also brought me friends and family who have become an important part of my life.

I may not see them every day, or even every other month. I am lucky if I see some of them every other year. I may not know their faces or hear their voices, but they are still in my thoughts every day. I laugh with them in their moments of happiness and I cry with them in their moments of pain, but most of all, I am just thankful that I have them as friends.

Now... with that, I have three sleeping children, medication has been given and feeds are up to date... so I am going to go and enjoy a few moments of precious sanity, savour a nice warm shower in this faux winter and then curl up in bed with a good movie and enjoy some nice spacious sprawl time before all of my off spring end up in my bed, which will be in about two hours and thirty seven minutes, give or take a few seconds.

But I leave you with this...

Take this moment and own it. Cuddle your children, kiss your partner, eat that piece of chocolate, and revel in the small things... don't take a single moment forgranted, because you never know what tomorrow will bring.

<3

The Emotional Roller Coaster

2010-04-09T19:37:00.002+10:00

When you have a child with special needs, there are a lot of emotions you feel. You feel grief at the child that you have 'lost' and you feel anger at the powers that be for this predicament in your life. You feel resentment toward those with 'normal' children, even if you have said 'normal' children yourself... you feel sadness, happiness, isolated, lonely, afraid, confused...

I guess the same can be said for having any child, whether they have special needs or not... but the big difference is that when you have a child with special needs, you usually feel all of these emotions at once... and they conflict and battle within, trapping you in a hair raising, spine tingling emotional roller coaster as each emotion battles for ultimate supremacy.

When you have a child with a rare condition that is considered life threatening, it feels like each one of those emotions is intensified a thousand times over.

We become hardened and battle weary, at least to the outside observer. We hide our scars along with our tears behind a false facade of determination, yet behind every smile and laugh, there is always that little bit of doubt, that little fear... that little voice whispering in the deepest, darkest recesses of your mind where only your worst nightmares dwell.

I remember when Nicola was 3 weeks old. We had done our journey in NeoNatal Intensive Care Unit and Special Care Nursery and we were being discharged to "Parentcraft" for 24 hours of observation. This strange ritual was allegedly to make sure we were capable of parenting a baby before being discharged, something I found somewhat ludicrous considering that I already had two other babies at home waiting for me.

We were sitting in Special Care Nursery and they were doing her discharge assessment and then Dr Az turned around and told me that he thought she had a heart murmur.

Well, that was it. I broke down and I just sobbed. My baby had a heart murmur, she had a defective heart... after 3 weeks of all tests coming back 'normal' or with nothing found that to be told there was actually something wrong just shattered me, and really, in the grand scheme of things, it wasn't even something overly serious!

Oh how we change...

Since then we have endured countless more diagnosis', not to mention surgeries, and procedures. I have held my daugher as she battled at the brink of death, I have fought doctors who didn't believe in her, and I have seen her defy odds and create miracles that no one can explain to me...

I have experienced a level of intensity of my own emotions that I never knew to be possible... an intensity so totally overwhelming that it is actually terrifying.

I have laughed when I wanted to cry, I have cried when I wanted to scream, I have held fast to hopes that seemed impossible... and I have lived with the mantra, "There but for the grace of God go I!"

If I could take everything I have learned in the past 18 months and turn it into one statement to give to any one who is about to embark on this journey, it would be simply 'do not be afraid of the darkness'.

No matter how dark moments of my life may be, they are only moments, and those moments shall pass. There is always a light to look toward...

"I will love the light for it shows me the way.

Yet I will endure the darkness for it shows me the stars..."

With Love...

Tall Poppy Syndrome

2010-03-31T20:43:00.003+10:00

Since the days of the infamous Aristotle etched his thoughts on parchment, Tall Poppy Syndrome has been documented throughout history. Given that some of you may not be familiar with the concept, TPS is a term used to describe a social phenomenon in which people with genuine merit are resented, attacked, cut down or criticized because their achievements distinguish them from their general peers.

I've often heard about this phenomenon, and outside obvious celebrity bashing, I had never actually witnessed it in person until just recently.

My husband and I recently dragged all of our children through what can only be described as a voyage into the second circles of hell last week. We took a 5 day trip to Melbourne. Drama's and nightmares and unwitting entrances into what could potentially have been the setting for a new slasher flick, I got to witness my first actual real life act of TPS.

Standing around at the RCH in Melbourne on Sunday afternoon, I was having a discussion about our goals for Nicola, and one of the things I raised was the fact that I was soooo excited about the prospect of being able to go to the UK Conference this year.

I was absolutely flabbergasted when one of the participants of the conversation laughed almost bitterly and responded with "It's nothing more than a Mr X. publicity stunt."

Now, I can't even begin to tell you on how many levels that is incorrect! I mean, I know how much work Mr X. and his beautiful wife Mrs X. have put into this event. And yes, there are one or two aspects of the event that are publicity driven, but seriously, how the hell else are we supposed to raise awareness of a condition so rare that most people will never even hear about it let alone meet someone who suffers from it?

But now, 3 days on from the moment those absinthal words were spoken, I have come to realise that it is a classic example of TPS.

Mr X. is one of those people that you often read about in those heartwarming stories that go out of their way to help others. He was the driving force behind the International Costello Syndrome Support Group and he has been one of the leading forces behind the conferences. He was also the very first person I ever spoke to about Costello Syndrome.

The day I was given Nicola's diagnosis he phoned me from the UK and listened to me bawl down the phone and virtually held my hand while I walked through those tentative first weeks.

He is part of the heart and soul of this group... and his support is invaluable to almost every member.

I guess that I should be thankful that despite the crap, there are people like Mr X. who still put their own needs aside to be there to support others. It's just sad that there are people who seem to delight in attacking and belittling their efforts and really it just goes to show that they are little more than sad, bitter and lonely individuals.

So why would someone want to attack a person as virtuous as Mr X.?

I guess there are as many reasons as there are stars in the sky... but at the end of the day, it comes back down to TPS.

The social phenomenon in which people with genuine merit are resented, attacked, cut down or criticized because their achievements distinguish them from their general peers.

All that aside, it was wonderful to be able to have a few days break, even if it was pure chaos! The girls had a great time, we got to do a couple of the sights and spend some wonderful down time as a family.

The girls absolutely loved going to the Zoo and it was wonderful to finally get a chance to meet up with one of my dearest and closest friends... (Love you Lizzie and miss you heaps!!!) and the girls loved going to Wonderland...

It was also great, although somewhat confusing, to be able to talk to Sue and Bronwyn again.

Though this meeting has now filled me with a lot of questions and a lot more confusion about the state of my daughter's health.

It seems to be the pattern that our lives are falling into now. Every time we get some answers, something else somewhere changes and we become even more confused and frustrated with the lack of answers or information that seems to be forthcoming.

Now, after all of that... I want to end this entry with a totally heartwarming note. Tuesday morning my brother arrived from North Queensland to help us with moving. He is very much a manly man type of guy... and has always been what I think is really a little bit afraid of Nicola because she's always been so fragile...

This morning he was playing with her and watching her respond and interact with him was just incredible... but the heart melting moment???

When my brother turned around and signed 'Good Girl' in Makaton to her.

I <3 my family, and despite everything, today I just feel blessed.

A Moment of Sadness.

2010-03-23T21:07:00.003+10:00

Ok... so good intentions aside... I really struggle to find time to sit down and write stuff here... and when I do finally get all the girls into bed and medications and feeds done and everything under control, I have hundreds of ideas of things that I want to write, but I struggle to find the words to write everything down.

Tonight I need to write something because I have so many thoughts rushing through my head that they're starting to jumble and crash... so it's time to put some out in the open.

So... anyway... here goes.

On Friday night Nicola got rushed into emergency theatre to have a shunt revision done. Nicola has a Programmable VP shunt inside her head. In laymans terms there is a catheter that goes into her brain and drains spinal fluid into a reservoir. The reservoir then drains fluid down through a valve into the cavity around her gut which is then reabsorbed by her body. The idea is that it is supposed to remove the excess fluid from around her brain and relieve the pressure around her brain.

So anyway, Thursday night we noticed that the site around her shunt on the back of her head was looking a bit squidgy... Friday morning we phoned the neurosurgeons to ask for advice... Friday afternoon she had a shunt series done to check the status of it and Friday night she was in theatre.

It was a bit overwhelming... but then again I am starting to get a bit used to this. My husband found it funny... every time anyone asked him about our plans for the weekend he responded with some quip about just popping up to the hospital for a spot of last minute neurosurgery... like it's no big deal or anything... you know, we may as well have just popped down to the local shops for how blase he was being about it all.

But this is our life, and we are adapting quickly. We are resilient, we have to be for our other children.

Anyway... this is where the real point of my post tonight starts.

Saturday night I get around to checking my email and find an email from one of the other Costello Syndrome Support Group Mothers, letting people know that her son had passed away.

He was 27 years old. He wasn't unwell, he wasn't in hospital, he hadn't had surgery... he just passed away. They think it was his heart.

It was a simple email, just one line... but it shattered my heart.

This hasn't been a good year for the Costello community. Willa has terminal cancer... she's only 2. Joanne passed away from complications from routine surgery... she was one of my dearest friends and she left behind two beautiful little children (one with very special needs) and a loving husband. Now with the death of Bret...

I feel like every other email that comes over the support group list leaves me in tears... the sad thing is, that no one in my real life understands why or how I can get upset over people who are virtually strangers.

To me, these people aren't strangers. Some of these people I have never met, some of these people I have met once... but still they are part of my inner circle... my nearest and dearest.

No matter where I look in my real life, there is no one that understands what we are going through on a daily basis. They don't understand the constant fear, the constant admsisions, the health problems, the medical complications... they don't understand the pain and the torment that becomes part of our daily lives...

We recently attended a support group meeting that was organised by one of the local disability services groups for families dealing with rare conditions. There were 4 families there... and out of all of them, no one understood what kind of life we were living. They haven't had the ongoing admissions or medical complications that seem to plague our every day lives.

And then there is my Costello Family.

While they don't necessarily deal with every single thing that we deal with, as a general rule, they understand. They get the babies that cry almost constantly for no reason... they get the feeding problems and the failure to thrive and the metabolic and endocrin problems and the gastro problems and the heart problems, the fear of cancer, and the combination of all of the above...

And they understand the isolation of dealing with a condition that no one else has heard of or understands.

We went to a cardio review last week and there was a new receptionist. While we were waiting to be checked in I glanced over the pamphlets sitting there and saw one for autism and one for downs syndrome, both talking about support groups and what help is available.

No one has heard of Costello Syndrome.

But my Costello Family understands, because they are living the same life that we are living. They are my light, they are my rock... they are my foundations. Without their support, I really don't know how I could get through every week.

That's why I get so upset when bad things happen to my other family. That's why I cry at the heartache of someone who is a virtual stranger... because even though they are virtual strangers, they are my family, and I love them all deeply... even the ones that I disagree with!

But beyond that, there is also the fact that it makes me question a lot of things that I try and push to the back of my mind... like the fact that there but for the grace of God go I.

And it sounds sooooo shallow and self absorbed to say that, especially in light of everything that has happened... but regardless, I feel it.

It could just as easily be my daughter, my family... and that thought tears me apart. I hate even thinking about it, but I can't help but think about it when the reminders are constantly there. One bad news email after another, one complication after another... every day there are reminders that our lives are just totally not 'normal' and that's ok... but every three months comes the slap in the face that reminds us just how bad it could be.

But at the end of the day, when I still have my daughter here, no matter how bad a day I might be having, what right do I have to complain when there are clearly others who are so much worse than I?

At least tonight I can still go and kiss my children goodnight...

A Little Lightheartedness

2010-03-07T11:04:00.006+10:00

We all have to start somewhere, right?

So I figured I would start this out with a little bit of a light hearted post... so, here are a few random little facts for you.

Did you know that we have:

* 1:576,000 chance of being struck by lightening
* 1:7000 chance of being considered possessed by Satan
* 1:88,000 chance of dating a supermodel
* 1:117 chance of being on a plane with a drunken pilot
* 1:60,000 chance of striking it rich on Antiques Roadshow
* 1:20,000,000 chance of being named a Saint
* 1:3,000,000 chance of spotting a UFO
* 1:10,000,000 chance of becoming president of the USA
* 1:215 chance of dating a millionaire
* 1:220 chance of writing a New York Times Best Seller
* 1:3,800,000 chance of winning First Division Lotto
* 1:28,000,000 chance of having a baby diangosed with Costello Syndrome.

“Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.”

<3

Another Surgery is Done!

2010-02-03T13:03:00.000+10:00

Woohoo! Another surgery that has been straight forward! Nicola had her T's and A's removed on Monday morning. The surgery was simple, but the surgeons said it was necessary. They were stunned by the size of her adenoids and her tonsils! So hopefully this will make a huge improvement to her sleeping and in turn her general mood!

She went into theatre around 8.45am and was out by 10am and only spent a few hours in HDU for observation before being transferred to the ward. One night in hospital and then we were discharged to the Lodge for recovery.

It's nice not being in hospital and having the freedom to come and go as we please and do what we want, but it's a pain in the butt being stuck here for the next two weeks just sitting around twiddling our thumbs!

The downside is that before she was discharged we got to see the rehabilititation specialists who looked at her muscle contractures on the right hand side of her body and they believe she has a hemi-dystonia that is most likely neurological in origin.

I soooooo look forward to the day when I can get to actually cross ONE specialist off her list instead of adding more and more!

At least we can go shopping! We're planning a shopping trip on Friday... a chance to scope out some bargains and catch up with some old friends and some new friends... but mostly just a couple of hours of normalcy which I am REALLY looking forward to!

Random Ramblings

2009-11-03T21:24:00.000+10:00

Going to the conference in the US was a god send for us, in so many ways. It gave us access to vital information that, now that we are back home and again lost in the depths of a thoroughly useless medical system, has proved to be a very very useful weapon to help get quality care for Nicola.

Unfortunately, the issues we deal with on a daily basis seem to be beyond the scope of anything our doctors have seen or dealt with… and because of this, we are often finding ourselves stuck in the ‘too hard to handle’ category and sent on our way, with a vague affirmation to return should the symptoms persist or should she deteriorate any further.

Today was yet another classic example of this.

For the past couple of weeks Nicola has slowly deteriorated into a pattern of excessive sleepiness. To the point that now, she will happily sleep for anything up to 20 hours a day. If she is forced to be awake, she will cry without consolation until finally she is back in her bed asleep again.

We spoke to our surgical consultant today who assured me that the problem is most definitely not a post surgical complication and in his expert opinion, it is another problem caused by the Chiari 1 Malformation that we know she has. He also advised that he felt it was best that we present to the local emergency department immediately for consultation with our paediatric team.

Before you read this next part, you need to understand how our medical system here works. We are at the state’s major children’s hospital, which is a teaching hospital. So the Consultant is the senior doctor. He is the one that all other paediatric doctors in the team defer to. Below him is the fellow. She is the one that has done all of her rotations and has an understanding of most of the workings of every department and has rotated back into general paediatrics to complete her specialty. Then below the Fellow is the Registrar. They are a semi qualified doctor able to make some basic day to day decisions, but still well and truly under qualified for anything even remotely unusual or different (and really, what part of ANY Costello Child is usual or mainstream?)… and then we have the Resident, fresh out of medical school, teaming with that whole megalomaniac ‘I am a doctor so I am elite’ sociopathy.

So dutifully I phone up our paediatricians. Our paediatric consultant is only in the hospital for 9 hours a week. Yes, that’s correct, it’s not a typo. 9. Nine. One more than eight, but one less than ten. Nine.

I end up with the Fellow who is rushing out the door on her way to an all important gathering (the Melbourne Cup is on today!) and so she just tells us to present to the emergency department for immediate assessment.

So we bundle the children into the car and traipse into the emergency department, and have to sit there and tell Nicola’s life story to the triage nurse. We finally get to see a doctor, and again, I have to tell Nicola’s entire life story, only to be told that they can’t find her medical records. They have somehow been lost between the outpatients clinic yesterday and the medical records department across the hall. But, never mind, they will just call our regular paediatric team in to assess her, after all, they know her best, right?

HAH!!

They bring in the registrar, who we have never met before today… So for the third time in as many hours, I find myself getting increasingly frustrated as I once again tell Nicola’s entire life story… only to be met with a blank stare… and then finally the resident, who looks like she is all of ten years old, pipes up and says “So what exactly are your concerns? Is it just that she’s sleeping and a bit cranky? Isn’t that what babies do?”

Seriously, this is about the point where one starts fantasizing about jumping up and just going completely postal. Visions of scenes from the movie John Q start flashing before one’s eyes…

So once again, I explain my concerns about her extreme irritability and excessive sleepiness… I explain to them that it is very much out of character for Nicola, and I am concerned about it. I have spoken to the senior surgical consultant and he has advised me that he believes that it’s neurological, stemming from her Chiari, and we need her to be assessed by the neurosurgeons that have been assigned to her.

Well, anyone would have thought I had asked them to go tap dancing on the moon given their reactions! The registrar tells me that that’s not how things are done and decides that she will have to do a complete assessment on Nicola.

So the first thing she does is get Nicola to lay down on the bed so she can have a look at her… then she turns to me and says “Are you sure she has Costello Syndrome?”

I explain that we’ve had the gene test and that it was confirmed and it was a conclusive test.

And she says “Are you sure? Only, she doesn’t have all the classic facial features?”

I felt like saying “No, I just feel like saying it, day after day, week after week, month after freakin month!”

She gets on with the assessment and asks a hundred questions and gets two hundred answers… and then she stands back and says “well, I think that’s it…”

“And the verdict is?”

“Oh, I don’t know, I’ll have to get the neurosurgeons to come and assess her… it’s most likely neurological.”

Well, you don’t’ say!!!

Long story short… 7 hours later, we finally leave DEM… we still haven’t seen the Neurosurgeons, and we’re still no closer to an answer. We have a vague assurance that some point in the future they will contact us to schedule another MRI to be done at some other point in the future, which will be reviewed by the neurosurgeons at… you guessed it… yet another point in the future!

Oh what I wouldn’t give for a crystal ball right about now so I could predict the future!

But all along, she kept questioning whether or not Nicola actually really has her diagnosis correct… after all, she doesn’t seem to fit neatly into the little box that someone somewhere has created just for people with Costello Syndrome.

Nicola doesn’t have an oral aversion. She loves foods, she loves tastes, she loves having things in her mouth and like most babies, everything that makes it into her hand goes straight into her mouth. Now that she has teeth she is getting very good at biting and chewing and can make a right mess of pieces of meat and biscuits and rusks etc, and she can devour a piece of chocolate like a monster in a frenzy… but she cannot swallow! She has the same issue when she tries to bottle feed. We know she has a weak and somewhat uncoordinated suck, but with a haberman feeder she used to do very very well and was on full oral feeds.

Apparently that is not normal for a Costello Child.

Nicola has Chiari 1 Malformation, which is allegedly supposed to be an asymptomatic adult condition… not a condition found in a baby of 14 months, and apparently she is ‘symptomatic’ of Chiari 2 instead… which, of course, as we all know, is totally impossible, because Chiari 1 never has the same symptoms as Chiari 2, especially not in the world of medical, tick the box and make it all fit, perfection. And of course, it’s entirely possible that Nicola doesn’t really have Chiari at all because Costello children “often” have enlarged ventricles and droopy brains just because! After all, how do they know that a “normal” Costello brain looks like?

So now, instead of having a medical team who ignore us and our needs… we have a consultant who is never available, and a registrar who thinks she knows everything because she’s read a few pages on the internet this morning.

But of course, none of this is really relevant anyway, because after all, it’s all in my head. We have an ideal medical system that never has any issues dealing with people, so I’m just a whinging, complaining, psychotic, neurotic mother.

Oh, and I’m also a bitch… but that’s a whole other story!

In love and madness!!!

The Sweetest Sound.

2009-10-05T21:26:00.000+10:00

Today my precious little girl is 13 months old and we are now 4 weeks into this hospital admission with no end in sight.

Any parent who has been in the position we find ourselves in every day knows the pain and frustration of having a child in hospital. The pain and frustration of being in such an alien environment… and I think that being a mother makes the frustration about a hundred fold worse.

From conception, as her mother, it is my job to care for her… to nurture and nourish her… to care for her and to love her… and when that role is taken away from you, there is such a sense of loss. All of a sudden, a role that is as natural to us as it is primal and instinctive becomes ambiguous.

Things that were once so natural, are now a charted and documented process and gone is the freedom of being able to make decisions that you feel best meet her needs… and the care of someone so innocent and precious is being entrusted into the hands of a stranger, who changes every 12th hour.

This admission has been even more of a rollercoaster for us than most. There have been so many things that have gone wrong in the past 4 weeks, with straight forward surgery going horribly wrong. In the past 4 weeks, she has been into theatre 6 times, had two collapsed lungs, spent 16 days ventilated, 1 day on BiPAP, 3 days on CPAP, 8 days on supplemental oxygen, 2 blood transfusions, staph, strep, entracoccus, and pneumonia.

With everything that Nicola has been through in her short little life, I have never in my life been more afraid that I was going to lose her as I have been through the early weeks of this admission. Seeing her wheeled back from theatre with her little body painted in orange and her eyes taped closed, ventilated and bagged, with so many machines connected is a sight that will haunt me for many years to come.

Even now, I still wake in the middle of the night with the alarm of the ventilator sounding with an apnoea alert or a frequency alarm and the sight of the x-rays showing her lungs collapsed and her little chest full of infectious gunk is still something that I can clearly visualise, and probably always will.

But, as with everything else, she has pulled through.

Every step of the way she has proved again and again that she is stronger than they realise. Every time I fight for her to be given a chance, she proves to the doctors that she is capable of miracles. She has smiled through immeasurable pain, and tolerated indignities that no little baby should ever have to endure. She has been suctioned and sutured and swabbed… poked and prodded and pricked… and generally just tormented to tears on a daily basis.

But today… today she has proved yet again just how truly amazing she really is.

This afternoon she suffered through the indignity of a sponge bath on her bed, when all she really wanted was a shower. I dressed her in her little jammies, when all she really wanted was to stay nuddie. I rubbed moisturiser into her arms and legs and gave her a bit of a massage, which, come to think of it, she really didn’t complain about much at all… then, after all of that, I leaned in and smothered her with kisses…

And that’s when it happened…

I heard it…

The sweetest sound ever to be heard by anyone anywhere…

Despite all her pain and suffering…

In the face of so much adversity and against all the odds…

My precious little girl laughed, for the very first time.

Anger Abound...

2009-07-10T21:15:00.000+10:00

Nicola has spent the largest part of her life as an inpatient at the hospital. It has been something that my family has struggled with from the onset.

We moved to Brisbane while I was pregnant with the intention of my husband going back to his former employer, which was a good, family friendly work place... a must given that we were about to have our third child in under as many years.

He lost his job in February this year after having too much time off work to care for our older children while I've been in the hospital with Nicola's repeated admissions...

But trying to make the medical staff understand the impact that this has on our lives has been nigh on impossible, to the point that we've just given up and put all our energy into the fight for her health care, a battle that was constantly being waged anyway.

After we were given her diagnosis, at our first paediatric consultation several weeks later, we had an extended meeting with the new paediatric consultant, as our original consultant was on maternity leave.

This was shortly after I wrote an extremely lengthy email to several high up persons to express my concern and unhappiness at the quality of the care she has received.

When we started this consultation, my husband and I sat down and took our time to explain our concerns... how we felt that our last paediatrician didn't listen to us and that our concerns were never considered, and that Nicola's care had been so far substandard that we didn't consider it to rate on the scale at all... and also the fact that they had REALLY dropped the ball with her diagnosis... that we were so angry and hurt by the way we had been informed of her condition and the fact that we were left on our own with no information, no support and nothing...

Of course, then and there, she said all the right things and made all the right gestures and promises...

Two weeks later she refused to sign the paperwork for us to travel. She told us that the risk of 'contracting seasonal respiratory viruses' was too high so she would not sign our medical clearance.

We dealt with that, we sorted that out... then today we've got a copy of Nicola's medical file to take to the conference with us.

Right in the front is a letter that this 'woman' has written and cc'd to every other department involved in Nicola's care as well as the local GP that *I* see and in it, amongst other anger intensifying comments, she states that we are 'hostile' and that our anger at the botched care our daughter has received is simply a 'severe grief reaction misdirected at medical and nursing staff'.

How the hell can she say that our anger over their screw up's is misdirected grief?

We've been angry since before the diagnosis, this is just the first time we've actually been able to get someone to listen to our concerns!

Gah!

I've sent an email tonight to the director of the hospital asking to have a new paediatric consultant assigned to Nicola's care. I need a doctor that I can trust dealing with my daughter, not a self righteous megalomaniac with a holier than thou superiority complex!

But still... soooooo angry I could cry!

For Better Or Worse...

2009-07-05T21:13:00.000+10:00

I received an email recently that quite upset me... it was talking about Costello Syndrome, and what it means to the particular person who wrote the email, who is a mother of a grown Costello person. Her feelings, when reflecting on the question "How does it affect my life" was quite simply that 'it doesn't'.

I read it, and my first response was to feel like I am some how inferior or something because to me it does affect me, it affects my whole family to an unimaginable degree.

To be honest, when we were first given Nicola’s diagnosis, if someone had told me that Costello Syndrome had no impact on day to day life, or that it meant nothing, I probably would have slapped them.

When the diagnosis was given to me, even though I learned the news in a truly horrible way that I honestly hope no one else in the world ever has to deal with, I truly felt like my world had ended. In those first moments, and in the days and even weeks that followed, I felt like something phenomenal had been taken away from me… and I had to grieve for what I had lost before I could realise what I had gained.

I still haven’t embraced her diagnosis, but I have started to accept it… and that in and of it self is the first step in moving forward.

Even though I have started to accept her diagnosis, to be told that it has no impact on day to day life is not something that I wanted to hear then, and it’s not something I like to hear now… because to us, it DOES impact on day to day life.

It impacts on our lives every time I have to feed her via the stupid tube because she can’t feed from a bottle, let alone breastfeed.

It impacts on our lives every time she gets upset and her cardiac conditions cause cyanotic episodes.

It impacts on our lives every time we have to go through yet another appointment or yet another review.

It impacts on our lives every time we have to leave the house… a quick trip to the store is a thing of the past.

It impacts on our lives when I’m waking up to her up to a dozen times a night, (last night was 11) because she has pain from some mysterious source that I can’t comprehend.

It impacted our lives again last week when her routine abdominal scan revealed a ‘mass’ behind her bladder and now we’ve been told to wait a month before we know if maybe this could be a tumour or not because this condition leaves her predisposed to all kinds of nasties.

It impacts on my life every time I see my nephew who is only a couple of months older than Nicola, or any other child her age… and he’s walking and running and talking and interacting with the world… and my daughter can barely hold her head up.

Perhaps the difference is the fact that my child is still just a baby and we are still trapped in the worst of this condition… perhaps the difference is the fact that I am still new to this world, I’m not yet a battle weary veteran… or perhaps the difference is just in my own mind…

So, I guess, after several days of thinking, contemplating and reflecting, this is my long winded way of saying that I disagree.

I have a daughter named Nicola who has Costello Syndrome… and whether I like it or not, it has changed our lives, for better or for worse.

Confronting The Truth

2009-06-25T21:27:00.000+10:00

T’Was a Tuesday When The World Ended…

Have you ever experienced that one moment where the whole world just stops? If you have, you know what I’m talking about… the moment where everything in the background kind of blurs away. You feel like your heart has stopped beating, but you know it is because it’s beating so loudly it’s drowning out the rest of the noise in the vicinity. You can feel sweat pricking on your body, but your insides have just turned cold. You have no strength, no will, no desire, no ability to focus, think or comprehend more than just one or two words…

For me, those words were ‘Costello Syndrome’.

This is the name of the great big evil horrible thing that is affecting me beautiful precious baby girl.

It still seems so hard to comprehend. I fell like I’m in an emotional train wreck.

Really, how does a person come to terms with the fact that their child, their precious, sweet, innocent baby, has this horrible syndrome, that is not only life threatening, it is also incredibly rare, so no one really knows anything about it!

When you have a child, your heart gets filled with all these hopes and dreams… you hope that your child grows up and does well in life… that they get a good education and a good job and meet a good person and have a good relationship and God willing, they start the cycle again so they get blessed with their own precious children, and they get to experience all the joy that they have brought to your life.

With those few little worlds, it felt like all my dreams for Nicola had been snatched away. Instead of dreaming that my child grows up to have a happy and prosperous life, I found myself dreaming that she will just grow up… that she will be one of the lucky ones who doesn’t have to deal with the neuroblastoma or rhabdomyosarcoma or any of the other cancers that plague these poor children in childhood and adolescence, that she won’t live a life of pain and suffering, that she won’t suffer in some horrible way.

All of a sudden, I’m playing a new and different game… the problem is, no one has told me the rules.

Most days I truly feel like Alice after she went through the looking glass. I look back on the life that I used to have, and I can’t help but think about how much easier that life was… how much less stressful…

But then I look at Nicola, and she gives me that beautiful little smile of hers… and I know in my heart that I wouldn’t change anything. She is here, she is ours and we will do everything that is humanly possible and then some to give her the best possible life we can… the life that she deserves to be living!

After all, the rules don’t matter. Rules are made to be broken.

___________________________

That was the (slightly modified) entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.

My wounds were raw… something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.

I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.

I can’t recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong…

Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?

Did I not take the prenatal vitamins early enough? Did I miss something else?

What did I do that could do this to my precious child?

I still lapse into those thoughts from time to time… I find myself wondering…

But oddly enough, now, only 6 weeks later, I can’t imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don’t mean just the medical skills.

Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.

Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible… and she has taught me how to fight, not just for her, but for everyone else that is just like her… and already we have achieved miraculous things that we never thought would be possible.

Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings… a story that reduced me to tears and kept me there for the rest of the day.

It was with that story that I realised that the confrontation for this condition hasn’t ended.

There are so many beginnings and so many endings… there are so many chapters in this story…

Some days I dare not turn the page for fear of what the new chapter may bring.

The reason I’m sharing all of this now is because today has been one of ‘those’ days…

One of those days where everything is just all too hard. I don’t want to deal with the truth, I don’t want to deal with the doctors, I don’t want to deal with the medical stuff… I just want one moment of normalcy in my life…

Tonight when I was doing Nicola’s speech therapy and giving her a bottle I discovered that she has cut her first tooth.

And that was it…

In the midst of all of the frustration and the confrontation…

As if she knew that tonight I needed it the most… my beautiful little girl had given me the one moment of normalcy I wanted.

Now, my wounds are still raw… I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)…

My heart will still break when she cries in pain… and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes…

I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better… I will still fight for her, and for every other person out there like her…

But now I can look forward to being surprised by silly little normal things as well.

Looking Forward, Looking Back.

2009-06-25T19:12:00.000+10:00

Looking back on the entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.

My wounds were raw... something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.

I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.

I can't recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong...

Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?

Did I not take the prenatal vitamins early enough? Did I miss something else?

What did I do that could do this to my precious child?

I still lapse into those thoughts from time to time... I find myself wondering...

But oddly enough, now, only 6 weeks later, I can't imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don't mean just the medical skills.

Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.

Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible... and she has taught me how to fight, not just for her, but for everyone else that is just like her... and already we have achieved miraculous things that we never thought would be possible.

Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings... a story that reduced me to tears and kept me there for the rest of the day.

It was with that story that I realised that the confrontation for this condition hasn't ended.

There are so many beginnings and so many endings... there are so many chapters in this story...

Some days I dare not turn the page for fear of what the new chapter may bring.

The reason I'm sharing all of this now is because today has been one of 'those' days...

One of those days where everything is just all too hard. I don't want to deal with the truth, I don't want to deal with the doctors, I don't want to deal with the medical stuff... I just want one moment of normalcy in my life...

Tonight when I was doing Nicola's speech therapy and giving her a bottle I discovered that she has cut her first tooth.

And that was it...

In the midst of all of the frustration and the confrontation...

As if she knew that tonight I needed it the most... my beautiful little girl had given me the one moment of normalcy I wanted.

Now, my wounds are still raw... I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)...

My heart will still break when she cries in pain... and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes...

I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better... I will still fight for her, and for every other person out there like her...

But now I can look forward to being surprised by silly little normal things as well.

And So... It Begins...

2009-05-18T18:11:00.000+10:00

It has been 4 weeks since the hospital received Nicola's test results. In that time, they haven't bothered to contact us at all, not even to give us the diagnosis.

So how did we find out about this horrible monster invading our precious little one's life?

Nicola was admitted to a different hospital for a scheduled heart procedure. She needed a cardiac catheter and a balloon catheter for her pulmonary stenosis. It was a bit of a hair raising procedure, but when we were sitting in the critical care unit, hours after she had come out of the operating theater, a doctor I had met for all of 5 minutes handed me a piece of paper and told me that my daughter had Costello Syndrome.

That was when he walked away and left me.

It seems that HE had access to the information that I had specifically requested to only be available to my husband and I until we had had some time to work through it emotionally.

I can't even begin to express on how many different levels this toys with my emotions.

I feel hurt that my daughters privacy was violated in this way, especially after we made specific requests as to how the results were to be handled.

I feel frustration that to all outward appearances, the medical staff we have been dealing with for the past 8 months are no more inclined to help now than they have been for the past 8 months...

And I feel anger.

I am angry that we got this diagnosis.

I am angry that they didn't tell me.

I am angry at the way they told me.

I am angry that they have made no effort at all as to her medical care.

In late March they told us that they would schedule Nicola in for a PEG within 4 weeks. We still haven't been given a date.

Two weeks ago I was told that Nicola would be scheduled for a gastro review within two weeks. I rang them today to chase it up again. Apparently it was forgotten.

Our pediatrician advised the staff at the Mater last week that they would schedule an appointment for us for this week.

We have heard nothing.

It seems as though the only way that we get any assistance from them at all is from me fighting and yelling and shouting and threatening and making a scene.

Don't get me wrong, I will continue to do so as long as it is necessary... but I just wish that she could get the proper medical care that she needs, without me having to fight so damn hard for it.

Unfortunately, there is no other hospital around better suited to our needs.

It makes me so sad, it really does.

Nicola is only 8 months old, she is a precious little baby... she shouldn't be going through all of this.

We made the decision today that we want to go to the Costello Conference in San Francisco in July. We think it's something important for us to do. Given that we are the ones that have to fight for Nicola's care, we need to know what to fight for, and that is going to be the best way to find out.

Hopefully this will be the start to making a HUGE difference in her little life!

T'was a Tuesday When The World Ended

2009-05-15T21:10:00.000+10:00

Have you ever experienced that one moment where the whole world just stops? If you have, you know what I'm talking about... the moment where everything in the background kind of blurs away. You feel like your heart has stopped beating, but you know it is because it's beating so loudly it's drowning out the rest of the noise in the vicinity. You can feel sweat pricking on your body, but your insides have just turned cold. You have no strength, no will, no desire, no ability to focus, think or comprehend more than just one or two words...

For me, those words were 'Costello Syndrome'.

This is the name of the great big evil horrible thing that is affecting me beautiful precious baby girl.

It still seems so hard to comprehend. I fell like I'm in an emotional train wreck.

Really, how does a person come to terms with the fact that their child, their precious, sweet, innocent baby, has this horrible syndrome, that is not only life threatening, it is also incredibly rare, so no one really knows anything about it!

When you have a child, your heart gets filled with all these hopes and dreams... you hope that your child grows up and does well in life... that they get a good education and a good job and meet a good person and have a good relationship and God willing, they start the cycle again so they get blessed with their own precious children, and they get to experience all the joy that they have brought to your life.

With those few little worlds, it felt like all my dreams for Nicola had been snatched away. Instead of dreaming that my child grows up to have a happy and prosperous life, I found myself dreaming that she will just grow up... that she will be one of the lucky ones who doesn't have to deal with the neuroblastoma or rhabdomyosarcoma or any of the other cancers that plague these poor children in childhood and adolescence.

All of a sudden, I'm playing a new and different game... the problem is, no one has told me the rules.

Our world is filled with medications and specialists and trips to the hospital... something as simple as running to the shop for a loaf of bread has become a mission that must be planned so precisely so as to ensure minimum imact on her life that it's generally easier to just not bother and give the other girls crackers instead!

'Normal' families have a linen closet that is filled with linen! Ours is packed with entereal feeding pump bags, syringes, tapes, papers, specialist prescription formula, and all manner of medical supplies.

Recently my parents were visting with us for Mother's Day, and my Mum was the lucky one who got to do the CECU (Clinical Equipmenent & Consumables Unit) and Pharmacy run with me to get Nicola's monthly supplies and she was absolutely astounded at how much stuff I take home every month... and even then, I generally end up ordering more from a third party supplier because we generally don't end up with enough to get us through.

Most days I truly feel like Alice after she went through the looking glass. I look back on the life that I used to have, and I can't help but think about how much easier that life was... how much less stressful...

But then I look at Nicola, and she gives me that beautiful little smile of hers... and I know in my heart that I wouldn't change anything. She is here, she is ours and we will do everything that is humanly possible and then some to give her the best possible life we can... the life that she deserves to be living!

After all, the rules don't matter. Rules are made to be broken.