Saturday, May 25, 2013


18th to 24th May 2013

Liquid water droplets of fog suspended in the air, translucent frost crystals scattering light in many directions and arctic southerly winds have invaded Canberra this week. 

I am thankful for the heat of my electric blanket , scrumptious mugs of hot milo and Mum's hugs to comfort me during this dreadful weather.

This week I have mostly slept, I have not been able to attend school for normal lessons at all.  I have done a little work from home though when I can manage to keep my weary eyes open. 

On Tuesday however I was determined to go for a special presentation that had been planned from last Term.  Jarrett, Nalani and I were doing a special presentation to Senior School on Brain Cancer.  We began with an introduction and then showed an excellent movie that Jarrett had made as part of a Biology assignment on paediatric cancer and also investigated my cancer as part of it.  We then showed a power point containing facts about Brain Cancer, we even had music to accompany it to make it more effective. 

Nalani read some passages from my first book, followed by some information about my treatment and side effects.  We then spoke about the Fundraising that I am so passionate about and this lead to Jarrett then speaking about his City2Surf Run to raise awareness and funds for The Sydney Children's Hospital Foundation Brain Tumour Research Fund. 

Nalani reminded people that it is through raising awareness and funds that other cancers like Leukemia no longer have the high fatality rates they used to.  She emphasised that if more awareness and funds are raised about Brain Tumours then perhaps the same results could be achieved. 

I know that a cure will not be found in my lifetime, but I hoped that through the presentation that people would go out in the community and continue to raise awareness and funds so that one day my greatest wish of a cure being found will happen.

Speaking of fundraising, Jarrett has now managed to raise over $5000, this is just so incredibly splendiferous and through people's amazing generosity which is humbling to both Jarrett and I that research can be done. 

Here again is Jarrett's City2Surf Everyday Hero Fundraising link so that you can continue to pass it on to as many people out in the community as you can.
I know that he also has a Blog on his fundraising page which he updates.

I now have two nurses that are coming to visit me, Leah and Karyn and a new doctor Dr Anne, they are taking extra special care of me and helping me to feel more comfortable. 

At physiotherapy this week the extraordinary Kaitlyn worked on my neck which was just so sore and stiff.  Then I had a wonderfully warm heat pack on it which felt marvellous.  Heat seems to be so soothing for my pain, the person who invented heat packs and hot water bottles is a genius!

I also had an appointment with my Paediatrician, he is also pretty amazing and takes good care of me.  He asked me lots of questions and examined me.  He found that my swallowing problems are also been caused by a palsy of my palate, this is all part of my tumours pressing on my spinal cord, just like my balance, stiff neck and shaking problems. 

In footy tipping Nana is still ahead, I think she may just win this time.  I was so very excited to hear that the Tigers have finally won a game, it was very close and they beat Nana's Team, The Cowboys. 

I want to thank everyone for their lovely comments and stories on my Blog.  I think that the story that Carol wrote about the rainbow ribbon was just so inspiring and beautiful. 

This week I had Mum help type this with me, she is so much quicker, she is a touch typist. I may have to get her to do most of the typing for me in the future also.  I supervised that she was typing what I wanted to say. 


Anonymous said...

Hello lovely Dainere,

Even in a week of needing much sleep, you have managed to spread the word about the need for more research into brain tumours - the work of a true champion!!

Stay warm and snug beautiful girl,

Lots of love and big, warm hugs,

Anna xoxoxoxox

Anonymous said...

Dear Dear Beuatiful Dainere, Anna , has spoken very True words , you certainly are a ""true Campion ""

Yes Im sure Charlie Teo would be extra proud of the work you and Jarrett and Nalani have done in spreading the word about about this terrible problem we have with brain tumours You are all so right , that funding for cancer lioke Breast and Luekemia and lung cancer years ago has reduced the number of ths by huge precentages

Your choice of words in the first paragraph is just so beautiful one can almost see the effects of those words .

Your body is telling yo to rest and that is the best thing , and you are doing that .

Oh we are so glad that have been able to go to school and give your presentation .

Jarrett , im sure will have some more donors coming in after your presentation .

We are going in to the city to see the Festial of light show again Dainere this year so i wuill send you some pictures of the beautiful colours , .
ANd as you know we are off to London on WEdnesday , so i will try and keep up to date with your blog from the UK ,

sending you lots of kisses and hugs and love always .

stuart and meryl

Anonymous said...

Hi Dainere, I was following your blogs as I travelled and as always you are a constant inspiration to me.

I am now home and also trying to keep warm, I know your family and friends keep you warm with all the love that comes your way.

Your passion about fund raising is such a big achievement and others will continue to help you. Jarrett is doing so well and it will grow as the event gets closer no doubt.

Your presentation at school sounds wonderful with a lot of work going into it but so worth the effort.

Lots of love and thoughts to you and family.


Anonymous said...

Dear Dainere,

What a wonderful opening to this week's post.

Great work from you, Nalani and Jarrett with the presentation.

Good on Benji! Could this be the resurgence of the Tigers?

Yes, Carol's words about the rainbow ribbon were beautiful. It was through Carol that I heard about you.

Sending rainbows and love.

Michael and Clare

Anonymous said...

Dear Dainere,

Whilst I have been a silent supporter of you and your blog all these years, I feel I should let you know that I look forward to your weekly blog and every time I see a rainbow I think of you. Your story has touched many people and you are truly achieving your dreams of increasing awareness and much needed fund raising. Your family is also amazing and it is beautiful to see so much love and support. With that said I'll head over to Jarrett's C2S hero page and chip in.

Best wishes

Greg Jericho said...

Lovely post Dainere. Such beautiful words to describe these cold Canberra days.

Great to see that Jarrett now has raised over $5,300. What a brilliant effort.

Anonymous said...

Dear Dainere
We agree, what a beautiful opening paragraph.

Even though the Tigers were playing against my team, Pop thought I must have thought my team had won, because I was so excited about the win. However, this time I was really excited for the Tigers win because I knew it would make you so happy. They can only go ahead now.

Wow! we are amazed at the amount Jarrett has raised already. What a great effort. Plenty more time for it to grow too.

Looking forward to seeing you down there real soon. Will have to bring plenty of winter woolies it sounds like.

Keep resting and warm Sweetie.

All our love
Nan and Pop xxxx oooo

Anonymous said...

Dear Dainere,

What a beautifully descriptive opening paragraph. As I read it I could see and feel those droplets and crystals.

When living in Canberra, forty years ago,I can remember being so excited waking one morning to snow. Another morning I had put some washing out, bent to get another article, stood up and whack!, my head hit a frozen singlet!!

Nalani, Jarrett and you planned a very interesting presentation. I'm sure there will be a response to that for Jarrett's fundraising, which is increasing almost daily.

We have had heavy rain over the last couple of days, but today has been warm enough to go for a very pleasant walk by the water.

Thank goodness for Leah, Karyn, Dr Anne, Kaitlyn and your family. They are all helping you such a lot.

I think I mentioned that I don't follow the football, but when I heard that the Tigers had won I was excited for you.

By the sound of it, you will have your Nan and Pop visiting soon. You will all be so pleased to see them.

Tell your Mum she is a very good typist. Touch typing is a real skill and asset.

Continue to rest this week. Snuggle up and keep really warm.

Much love,

Elizabeth xoxo

Anonymous said...

Hi Dainere
I am so proud that Jarrett has raised the money for brain tumour research. This is truly wonderful news.

I am glad that your Mum could type for you, she is the Personal Assistant to you, the Managing Director!

The Tigers won and I didn't pick them. Actually I have only picked 1 this round, I've dropped from 2nd position to 5th - how dreadful. But, there is still a lot of footy to play so fingers crossed.

Glad you are keeping warm. Hot Milo and heat packs will do the trick always. I picture Tinkerbelle curled up nearby too so I bet she is enjoying your company.

Double rainbow at my place last week. I got my son to take a picture with my phone but we were driving to school so it was to blurry to send to you. Main thing is that we all thought of you.

Went to the City to see the lights on the Opera House and Art Gallery. It was very crowded on Sat night but spectacular to watch. Many tourists, photographers and families about enjoying the sights. We thoroughly enjoyed it.

Take Care, Love to your family, thinking & praying warm thoughts always, Love Fran XXOO

Gail said...

Dearest Sweet Pea

Another beautiful blog entry for us all to enjoy. I was at a staff meeting this afternoon and SO many Senior School staff told me how absolutely awesome your presentation was.

Congrats to you, Nalani and Jarrett for continuing to spread the word about the importance of finding a cure for brain tumours.I am sure you will see an increased interest in your fundraising as Jarrett prepares for his big run.

Stay warm, love and hugs to you

Gail xx00xx

Anonymous said...

I am sharing Jarrett's City2Surf on Facebook and asking my friends for a donation (even if just a few dollars, it all makes a difference) It is amazing that he has raised so much already. Awesome work, both of you.

Stay nice and rugged up, Hot Milo and cups of tea (with lots of sugar) I got a nice Purple fluffy dressing gown. It is so soft and so warm! Maybe you should get one too! You defiantly need one during the Canberra winter!

Take care x x x x x x

Anonymous said...

Dear Dainere,

Some time last year Claire had a book voucher to spend. Of all the books in the bookshop, she picked yours. 'You have to go through a storm to get to a rainbow' proved such a good read! We could hardly put it down. And it was only while reading it, that we realised who you were and that we were in fact seeing you at summer meets and high noons! Since then we have been enjoying your weekly blogs. Your writing is truly amazing! Despite all the hurdles, each post contains new energy – a poem, an insightful thought, or a spot-on observation; very much looking past the dark clouds to the rainbow beyond. We hope to read many more posts and just wanted to let you know what an inspiration you are! Admiring a rainbow, when we see one in the sky, is a whole different experience now.

Stay warm and snug on this first winter weekend!

Best wishes.
Claire and Kirsten