Thursday, October 21, 2010


21st October 2010

This is a special Blog entry today, it is another twist in my journey which has turned my life upside down and has made me more disconsolate than even my diagnosis with a brain tumour.  Late yesterday afternoon we received the deplorable telephone call from Sydney.  They wanted me to organise to get there as quickly as possible because they had reviewed information about my seizures with other medical professionals, along with my weaker pulse and blood results, they are deeply concerned that what we have thought to be seizures may be mini strokes.  They are admitting me to hospital for tests with a Paediatric Cardiologist, you see there is a five per cent chance after having my high doses of radiotherapy and chemotherapy that there can be heart damage and the possibility of stroke.  Mum questioned some things and they told her that they felt they wanted to see me sooner rather than later and if anything happened overnight she was to take me to hospital immediately.  Well nothing did happen, except for my usual pain and joints stiffening so this call has left us all really puzzled.

Even though I face pain each and every day and I am debilitated when I do have the seizures which is what I will still call them unless diagnosed otherwise, I actually am feeling well considering all I have had to endure and will always retain a positive outlook, so you can see why this telephone call really hit me like a ten tonne brick.  I have so many wonderful events and experiences coming up at school and home, I don't want to miss out on any of them especially the fun run and my Raising  Awareness presentation, I would be absolutely devastated to miss them and there is no way that I intend to miss them.

Today I went to school, it was to help me to forget about the telephone call and it did because I was so occupied doing Australian Studies in which we were given an assessment task about the Australian Flag, it is an assessment where you have to put much thought and creativity into it.  After Australian Studies it was double Maths and we were working on a Rich Task where you choose the work you are going to do and gain stars for completing it.  I did a Glossary of Terms for Angles and earnt two stars and then did two worksheets they were both worth two stars each also.  We have to have achieved a certain number of stars by a given date.  Even though my mind was in a total whirl today, I am slowly starting to really comprehend angles, practise certainly does pay off. 

When we came home at Recess, Mum had to organise our airline flights for tomorrow, as well as reorganising and cancelling numerous appointments that we had.  Once at home Mum and I both sat down and cried together, Mum takes such good care of me and thinks it is so unfair that I have to face so many hurdles.  I just want to have a life, I am trying to move on and make the most of each and every day but this is like Mount Everest appearing in my path and I don't know how I am going to climb it.

In the afternoon we had running training, it was a lovely Spring day with just a gentle soothing breeze in the air, so Mum and I went for a walk around the oval in my wheelchair, the fresh air really clears your head, if I can't go over this mountain then I will go around it before attempting to climb it.  We saw a family of rabbits nibbling the lovely, thick green grass, normally as you approach them they hop away nervously but today one rabbit just sat there nibbling, we were so close before it hopped off into the safety of its burrow. 

I will keep you all updated on my progress in Sydney but now I have to go and pack my suitcase ready for our departure tomorrow morning.

'Sometimes we let fear stand between us and our rainbow but if we have courage, our hopes and dreams will lead us to our pot of gold in life'


Dorothy said...

Hello Dainere ... I have been following your blog for a long time now - actually since the article about you in the Chronicle. I really admire your courage and determination and want you to know that my very best wishes are with you and your family. I will be thinking of you.

Anonymous said...

Dear Dainere
We too were shocked to hear the news this morning about why the doctors want you back in Sydney. You have been progressing so well lately and we are sure you will once again show your inner strength and be able to climb over Everest.

Know that we love you and will be thinking of you and wish you more rainbows than you ever dreamt of.

All our love
Nan and Pop xxxx oooo

Anonymous said...

My little girls and I wish u well in Sydney. I have everything crossed for u that it all goes well and also that u getsome answers - our thoughts are with u and ur Mum - take care xoxo

Anonymous said...

Dear Dainere,

What a brave, courageous girl you are!

Thinking of you and sending much love and prayers as you go to Sydney.


Anonymous said...

Hi Dainere,

As a regular follower of your blog I feel I am right beside you in your journey. After reading this post I feel such a mixture of emotions as I feel like I know you. I continue to be amazed by how courageous you are, and I am sending all my positive thoughts and well-wishes to you for your time in Sydney.

Keep that rainbow in your sights Dainere.

All the best,

Sarah xxx

Luke Arms said...

Hi Dainere,

I'm so sorry to hear that yet another hurdle has come your way, and that you need to be away from home again. :(

It must be so hard to find courage and resolve with all of this happening! Know that we're praying for good news and a speedy return to Canberra. Also know that your endurance and smile continues to inspire everyone around you. :)

Much love,

Luke (& Michelle & Joey)

Ali Davies said...

Dear Dainere
Gutted to hear your news.

You mention this latest obstacle feels like Mount Everest being put on your path. But always remember that the way people get to the top of Mount Everest is to take one step at a time. Then they rest. Then they take a few more steps.

I think looking at just the first baby steps can sometimes help with dealing with great big obstacles.

Reminds me of one of my 6 year old son's favourite jokes - "how do you eat an elephant?" Answer - "one bite at a time"

Please know that I am thinking about you and sending huge amounts of good wishes and support as you tackle your Mount Everest.

Keep on keeping on Dainere.

You are a star.

Ali x

ruddygood said...

Hi Dainere,

I work with Cate on Project 18, have been quietly reading along and cheering your progress and spirit for a while now.

I thought this was a good time to pop up and say Hi, and let you know that I'm sending my love and very best wishes along with you as you and your Mum hop on the plane tomorrow.

I know how frustrating it is, when you just want everything to be normal and to be able to get on with your life and school and activities and appointments, without rushing around to doctors' appointments and so on. My little boy was born without a lower left leg and foot, which mostly presents absolutely no challenge to him, as he can hop like no-one's business, and usually has a fine prosthestic leg.

This year, though, his first at school, he's had to deal with surgery for the first time, which meant he started in a wheelchair and then crutches. After we thought he'd healed and was back on a new leg, he developed eczema in his leg, and had to go back to crutches for much of this year.

It's been really frustrating for him, as he just wants to get out and run around with everyone else, and I know he struggles with feeling left out. I hope you two can meet some time; he's bright, so I think a dose of your mature and perceptive wisdom would do him the power of good.

Take care, hon. We're all thinking of you.

Tracy x

Anonymous said...

Hi Dainere, I have just come in from work , oh what a shock, it is so very hard for you , I can only say , take one step at a time , get to sydney , and lets just see what they say , I know how it feels having been down a road so similar. just keep an open mind , YOU WILL overcome this , you have so many people behind the scenes praying and wishing this would go away . I can rememnber saying why me , Dainere outside my neurosurgeons rooms and crying lots , when he told me "its now on the brain stem stuart "". So hang in Dear Dainere ,

Believe me you will climb mount everest , but it has been a shock for you , you give lots of kisses to your dear mum and dad and siblings, . we all love you very much . God Bless . lots love stuart and meryl xx