Saturday, March 10, 2012

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.

Thursday, March 1, 2012

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.