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??