Merry Christmas

The show must go on...

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

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

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

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

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

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

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

My daughter has cancer.

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

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

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

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

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

But we had a good day.

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

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

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

And now it is over.

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

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

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

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

Santa Clause Blues

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.

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

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

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??

:D

(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!

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...

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...

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...

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. :(

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

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!

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.

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

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

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!

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.

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...

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.

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.

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...

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!

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!

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.

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...

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...

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

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??