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.