When You Wish Upon A Wiggle

To fully understand the gravity of this situation, let me give you a little bit of a background story. Nicola isn't just a fan of The Wiggles, she is utterly fanatical. She has likely passed fanatical and is setting herself well and truly into the territory of psychopathical.

For months my husband and I spent hours and hours trying to teach her to sign "Mum" and "Dad" and she just refused, yet it took her all of about 30 seconds to learn how to sign "Wiggles" which was the first ever sign she used to communicate with us.

It was with the help of The Wiggles that we had a major breakthrough in her therapy. When her therapists weren't convinced she was able to show cognitive recognition of movements and remembering them in order, we played the song Rock A Bye Your Bear and she proved them wrong.

The Wiggles have seen her through her darkest of days and through her happiest of moments. The Wiggles have kept her company as she has wiled away many many hours waiting for doctors and surgeries, kept her company through recovery, occupied her on millions of miles of air travel... The Wiggles have been almost as constant in her life as I have.

When The Wiggles performed in Townsville last year, there was a small selection of children with additional needs that were chosen to attend a special VIP meet and greet, and Nicola was amongst them. It was something that we were so excited about for her, but then two weeks before the scheduled date, Nicola had her fated ultrasound that discovered her primary tumor. Within 48 hours we were on a plane to Brisbane, and she missed out.

We then planned to take her to the Brisbane concert, but we were sent back to Townsville a matter of days before the concert happened, so she missed out all around.

Which is why, when she was diagnosed with cancer, and we made the decision to engage Make A Wish, we could think of nothing better for her wish than for her to meet the people who have brought so much joy to her life.

It took us a while to get the courage to actually proceeed with it. We always knew that she would be eligible for Make A Wish, but there is a vast difference between being eligible because of genetic lottery and being given a diagnosis of Stage 4 cancer.

Sadly for Nicola, by the time we actually had the courage to proceed with the paperwork, we were told that Make A Wish had closed their books because they had too many outstanding wishes and not enough funds to fill them. No new wishes were being accepted.

Nicola was going to miss out again.

We made the decision to put her Wiggles Wish on hold for a while and to focus on the radiation, meanwhile a wonderful group of my friends were working on devising all kinds of schemes to make Nicola's Wiggles Wish come true.

It was after we brought the big girls down that it all started to happen. Childhood Cancer Support were wonderful enough to give us a family pass to Seaworld to make Jessica's and Isabella's wish come true. They wanted to see Spongebob and Dora at Seaworld.

It was as we were driving down we saw the big sign on the side of the highway stating proudly that The Wiggles were performing at Dreamworld on the 10th of March.

I went to Childhood Cancer Support to ask them if they could possibly help us get her into Dreamworld. If we couldn't meet The Wiggles, at least she could see them sing!

It was a week later that Michael came home and told me that entry into Dreamworld had been organised...

But wait... there was more!!!

Not only would we get to see The Wiggles sing, we would get to meet them. Face to Face. They would occupy the same immediate space as Nicola, at the same time as Nicola...

Her Wiggles Wish was going to come true!

That was a week ago... and after a week of nightmares, ups and downs, fears and concerns and all kinds of moments and emotions... today was the day.

And it was a day that surpassed our wildest expectations.

At 8.30am this morning the crowd of toddler toting parents was already a hundred deep, even though the park wasn't even open. Dreamworld themselves had said that they expected thousands of people through the park.

As prearranged, we ducked off to White Water World where The Wiggles were hiding to escape the crowds. Someone from Dreamworld came out to meet us and took us through where The Wiggles were waiting.

At first Nicola was a little overwhelmed, she wasn't sure what to do or where to look first, but then when Jeff fell asleep and they had to wake him up, she started shouting "Jeff" and her morning began.



First of all they sang her all time favourite song, Rock A Bye Your Bear with her, which she just loved. She sang a long and danced in her chair and did all the actions.





Then they sang Twinkle Twinkle Little Star, and sat down with her and talked to her and held her hand and generally just made her the star, and then it was time for us to go.





Dreamworld had set aside reserved seats for us in the very front of the stage so that we could watch the show and when The Wiggles came out, they all waved to Nicola and started out by singing Rock A Bye Your bear again with her.



She absolutely loved the entire show, she danced and clapped and sang and had so much fun...





Then for their last song, they performed Twinkle Twinkle Little Star again, and in front of the huge crowd they talked briefly about how they had met an amazingly special little girl before the show, and how this song was dedicated to Nicola... and her whole face just lit up.



And then the show ended. Each one of them, including Captain Feathersword who we hadn't previously met, came down and once again blew her kisses and held her hand and wished her love and luck.

She was so exhausted that my beautiful little girl who never sleeps anywhere except in her bed with her blanket and her Ellie started to fall asleep in her wheelchair when we took them all on the boat ride.



As we were heading toward the exit her sisters wanted to go on the Dorothy Tea Cups, and she was adamant that she wanted to join them... and to start with she had a ball!



But it didn't take long for it all to become too much.



So we called it quits and came home. One of the amazing things that came out of it was that Dreamworld actually gave us all 21 day super park passes, so for the next 3 weeks we can take the girls all to Dreamworld and White Water World as often as we want, and of course, the two big girls have already made plans to take full advantage of it!

And so now, here I am. All the children are in bed asleep, which has left me free to write this post and reflect on the day, which has been nothing short of utterly astounding. From the moment we first arrived everyone went out of their way to make us feel important and to make it special, and clearly Nicola especially had an amazing time...

Yet for me, the whole day was tinged with an edge of sadness because of all the emotional baggage associated with such a huge experience, or why it happened, but today hasn't been about me. My tears are my own, and they are not for her to see tonight. Today has been about a special little girl who is incredible and brave and so very very very strong... and about her Wiggles Wish.

Tonight, my beautiful precious little girl is dreaming Wiggly Dreams.

Time Warp

There is something about watching your child suffer... the experience is indescribable. To know that your sweet, innocent baby is being forced to endure so much and you are powerless to help her in any way...

I guess this week has been a week of reflection for me. The changes in Nicola since her diagnosis have been creeping up on us slowly, and we have been so immersed in her little world that we haven't seen the changes until we were slapped in the face with a great big 'once upon a time' moment.

A few days ago I was looking for something on my computer, and I found this:



Nicola on her 3rd birthday in September 2011. She looked so bright and healthy and happy and her cheeks were so chubby.

Then everything changed. I can't describe how it changed, because words just won't do justice to her journey... the only way I can really do this is to show you the last 4 months of her life.



This was the first sign we had that there was something wrong. Her poor little tummy got so bloated and nothing we did seemed to help. She was in so much pain, she just couldn't seem to be comfortable no matter what we did. It came up in the space of about a week. Then a week later we had our answer. They found the tumor.

They admitted her into hospital straight away and started giving her chemotherapy and they had her in IV fluids which left her fluid overloaded. She gained 3kg in less than a week. This is a child who's starting weight was barely 10kg, she gained one third of her body weight.



But then we got a brief stint at home and she seemed to really pick up... she was bright and happy, with the help of some incredibly strong drugs we got back the baby that had been missing since before this whole journey started.



And then radiation started.

The decline in her health since the radiation started has been unbelievable. She looks so emaciated and so drawn... but she hasn't actually lost any weight at all. I don't know how to describe it... but they say a picture is worth a thousand words, right??



And then, finally, today it really struck me.

In the past week we have seen a massive increase in her pain levels again, to the point that yesterday we needed to engage the pain team again who increased her pain medications. She is now on a total of 72mg of assorted opioids a day just to help her get through each day. She is on 3 different types of anti nausea medication, anit histamines to stop the side effects of the opioids, antibiotics to prevent pneumonia caused by chemotherapy, anti anxiety drugs to help relax her enough to cope with every day, and a whole host of other assorted drugs to help with various things.



Yet, just to look at her, seeing the way she looks now, hurts my heart in a way that I never imagined was possible.



I guess until I went through my computer I never really realised how sick my baby really is. Every day we just get up and deal with what needs to be dealt with . We manage her pain as best we can, we manage her nausea as best we can, we manage her feeds as best we can and we try to keep her as comfortable and as happy as possible...

Yet now, I look at her, and I can't help but wonder where my beautiful little happy girl is, and if I will ever see her again. Her beautiful little curls are gone, her smile is gone, her chubby cheeks are gone... and I don't know what to do to bring them back again.

:'(

The Stars of the Show.

So, after a comment on my last blog entry it occurred to me that I talk a lot about my family, yet I've never actually 'introduced' my family. So tonight, I am going to take some time to do that.

Meet Jessica.



Jessica is my oldest daughter. She is five years old, turning 6. She loves Barbies, My Little Ponies and her cat Emmaline. She loves dancing and learns Ballet, Jazz and Highland. She has just started in Grade One and she loves school, loves to learn and loves her friends. She is beautiful and smart and incredibly wonderful and she makes me so very very proud that she is my little girl.

Now I would like you to meet Isabella.



Isabella is 4 and has just started in Kindy. She loves Barbie and Dora, Tinkerbell and her puppy Silvermist. She loves dancing and learns Ballet and Jazz and she will be starting Gymnastics as soon as life settles down a little. She is bright and funny and smart and oh so very very cheeky! She lives life a mile a minute and never slows down and when Isabella is around there is never a silent moment, but she is one of those rare beautiful little souls who just has a natural ability to make everyone around her feel happy and loved.

This is Alyssa - aka - "Squeaky"



Alyssa just turned one at the end of January. She is crazy about Dora and loves food, and idolizes her big sisters. She is a little trouble maker with a cheeky smile who can crawl faster than Daddy can walk. She is warm and snugly and gives the most wonderful cuddles and big wet baby kisses.



From not long after Alyssa was born, Nicola has made it very clear that Alyssa is HER 'bubba'. Now, a year later, Nicola has developed her own hand sign that is just especially for her Bubba Squeaky.

Of course, everyone knows the Star of this show. Princess Nicola.



3 years, 5 months and 6 days old, and as cheeky as any little monkey. She is psychopathically attached to The Wiggles, loves her sisters, chocolate custard and hates green vegetables. She is smart and warm and has her own incredibly gorgeous personality and a very infectious smile that she loves to share.



Together they are my beautiful girls. They are my heart and soul and the center of my universe. They are what keeps me going through every day. Every single day they make me incredibly proud that they are mine. <3

50400 minutes...

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

5 weeks...

35 days...

840 hours...

50400 minutes...

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

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

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

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

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

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

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

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

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

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

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

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

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

Sleep Finished.

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

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

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

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

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

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

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

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

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

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

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

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

"Yes, sleep is finished."

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

Her logic was really very simple to understand.

Sleep is finished, now it is time for food.

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

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

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

After that, her signs were abundantly clear.

'More Dadda'

'More Sisters'

'More Squeaky'

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

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

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

Caffeine is my friend!!!

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

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

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

Just Wait and See.

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

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

That was when things started to go bad...

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

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

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

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

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

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

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

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

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

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

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

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

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

"Just wait and see"

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

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

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

Unanswered Prayers

14 weeks ago tonight I sat here and wrote with tears in my eyes as I shared with the world that there was no doubt, my beautiful precious girl had cancer, an announcement that started the roller coaster ride that has become our life.

Since then we have endured one agonizing week of waiting, twelve weeks of intensive chemotherapy and another week of agonizing waiting...

We have hoped hundreds of hopes, prayed thousands of prayers and cried millions of tears...

We have thrown our lives around, watched our other children buffeted by the after shock tsunami's of Nicola's earthquake, and tried to hold on as our feet have been swept out from under us...

All the time we have held fast to the desperate hope that today would bring positive change... today would make it all ok. Today would give us the hope that we needed to keep going through this journey.

To be honest, we've psyched ourselves up a lot. We've watched the way Nicola has handled everything, her superstar performances, the amazement in her doctors every time her bloods came back, her beautiful smile that has managed to shine through almost every single day, and we've assumed that her first restaging was going to bring reassuring wonderful news of an amazing improvement in her cancer.

Well, today has come... and it did not bring us reassurance, it did not bring us comfort, and it did not bring us hope.

The positive is that the cancer has not visibly progressed.

The negative is that there has not been the amazing improvement we had hoped for... in fact, there has been very limited improvement.

The tumor has had limited shrinkage.

The cancer is still prolific through her abdominal region.

The metastasis is still severely impacting on her lungs.

12 weeks of intense chemotherapy and there has been limited change.

To say I am gutted is an understatement.

I feel shocked, I don't want to believe it, I don't want to think it's possible, but I know it is.

So what comes next?

Surgery is absolutely and completely not an option.

Monday we turn our lives inside out and upside down so Nicola and I can fly to Brisbane for her to start 6 weeks of intensive radiation therapy. We have to cross her fingers that her little airways can cope with the stress and pressure of the repeated anesthetics and pray that in 12 weeks we find something to give us a little hope.

I know I should be hopeful, I know I should just believe that everything will be ok and that she will come through this, and God knows, if the power of prayer has anything to do with it she will soldier through without a backward glance...

But I find it hard to cling to something I can't see. I don't like groping blindly in the dark hoping and praying that sooner or later my fingers will just happen to grab hold of a life preserver...

I can see little glimmers, but I'm still desperately waiting for the beacon of hope that is supposed to come.

Who knows, maybe in 12 weeks we will find something... but tonight, the world is just a very cruel, dark and miserable place.