Tuesday, July 6, 2010


5th and 6th July 2010

From glorious sunshine to inclement, wet weather, how easily weather can change from one extreme to the other. It was virtually snowing today as once again Canberra experienced an arctic blast.

I started my day yesterday with my upper body exercises which I found were a little difficult, I think the cold weather made my muscles slower to respond. I tried to also ride the exercise bike but once again my knee just kept sticking and I could not make those pedals rotate.

Mum, Jarrett and I went grocery shopping, at least it was warmer this week than last week in the shop, they must have had their heating working this time. I bought ingredients to make some cupcakes because we were having Ally and her Mum Di over the next day and I wanted to make her something special. I decided on strawberry cupcakes with little butterfly decorations on top of the strawberry flavoured icing. In the afternoon I cooked them and I was really proud of how they turned out. We played Upwords twice and had a game of Buzz Pop Quiz on the Playstation and I actually won.

I found out that Borders in the Canberra Centre have sold out of all my books, so now the only way to get them is from Tass at IGA Deakin, from me or online. Kevin the Manager at Borders was really excited that all ninety books they had sold out in less than a month. With those ninety books sold they will send a cheque that I can then send to the Sydney Children's Hospital Foundation Brain Tumour Fund, I do hope that what I am doing is really going to make a difference, when I am in pain I don't want anyone else to have to suffer like I am.

My pain continues to cause me so many problems, it makes me feel fatigued, ill and weak, I continue to take pain killers, use heat and massage but it only eases for such a short period of time and the time frame is becoming shorter and shorter that I have any relief. I tried to stand a few times today but each time I fell, one time I slipped from Mum's grasp a little and I felt like my ankle twisted.

I watched MasterChef and was blown away by the challenge they faced, it was interesting that Peter was eliminated when Marion's effort on her purple macaroons was inedible. I am not sure sometimes how decisions are made and I think Marion is extremely lucky.

At 1.30am I heard the rain and wind outside the bedroom window and called out to Mum in pain, unable to straighten my right leg and I had dreadful pain in my foot. I had a lump on the side of my foot when I was in Year 4, they called it a Blastoma, it was painful then and I was unable to walk properly on that foot, I had to use corn pads, heat and wear soft shoes and it disappeared. This time it is more painful, it is swollen on the side and under my foot and even to touch it sends shooting pains up into my ankle. I might have to go to the doctors, for him to have a look at it if it does not settle down in the next couple of days.

Today was an exciting day even though it was so wintry and bleak because Ally and Di were coming over, I have been emailing Ally now for quite a while and we have spoken on the telephone but it was terrific to think I was actually going to meet this wonderful person who has become a special friend to me. When they arrived they were both so friendly and it was like we had known each other for ages. We chatted, played Upwords, did a puzzle game that Ally brought with her, made card houses, Ally taught me some card tricks and we had my cupcakes. Ally and Di gave me a very special cook book, it is one that was done to help raise funds for boys who have XXYY Syndrome, it has the most delicious recipes in it. Di brought over their extraordinary vacuum cleaner called 'Rusty' it is a iRobot vacuum and it was so cool, it vacuums the house by itself by hovering around and it even takes itself back to a home base to recharge itself. Meeting Ally and Di was marvellous, we will be keeping in touch and hopefully able to get together again, I think I have said before that I have met some of the most incredible people through my journey and that is such a gift.

Having visitors is terrific but I often find myself extremely tired afterwards and today was no exception, I had a rest on the lounge chair after they left then watched some Sabrina the Teenage Witch Episodes on DVD while the rain began to fall more steadily outside.

Nalani has to go to the Sport Physician tomorrow morning, hopefully they can help sort out her knee so that she is able to do all her sport again, she said she knows how I feel now, not being able to do the activities that you really enjoy.

Today was Bill's funeral and I was hoping that the sun would shine but as the rain drops fell it reminded me of the tears that many would cry for him today. Perhaps after the rain though a rainbow will shine for him to celebrate the wonderful person he was.

'Friendship is a living thing that lasts forever when it is nourished with kindness, empathy and understanding'


Anonymous said...

Dear Dainere
Firstly, Bill's funeral was today and it was predicted that rain would fall up here, but at the time of his funeral the sun was shining brightly. Perhaps all of the prayers that you have encouraged brought about the sunshine for today.

Do we have some news for you. Tonight, Chifley was outside eating his tea, when all of a sudden he started barking angrier than we have ever heard a dog bark. Pop checked to see what he was barking at and there lying just off the tiles of the pergola was a snake one of the python family, but nevertheless very dangerous to a pet.

We quickly got Chifley indoors and called the wildlife rescue volunteers who came quickly and took it away. I took a picture of it when the man caught it so I will email it to you to see.

Sounds like you had a lovely time with your new friend. That was so nice of them to come and visit. I think Mum needs one of those vacuums.

Anyway, do hope your pain eases, and that your foot gets better real soon.

Lots of love
Nan and Pop xxxxxxxx

nausikat_101 said...

Hi Dainere,
I have just finished reading your wonderful book. Prior to this I had not heard about your story/journey, and just happened upon your book in angus and robertson here in Adelaide. I think you are an amazing young woman, who is helping others so much in writing this blog and book. Your courage is so inspiring. Also your family, in particular your mum I am absolutely in awe of. I am a mother myself, I have a 10 year old son, and I think she has been so brave through this whole journey.
Keep smiling, look forward to reading about your continuing journey.

rhiannenlouise@yahoo.com.au said...

Dear Dainere,

You are the most amazing beautiful princess! I went to get your book at Boarders but they had sold out. When I read your blog and saw that IGA still had some and I couldn't believe my luck because I work at the school around the corner!!

Imagine how surprised I was to see that you had autographed the book I purchased! Thank you so much!!!

I have a joint condition so I know how it feels to be in pain and not be able to do anything about it - although I imagine yours is so much worse! I hope your team of specialists can find away to make you more comfortable soon!

Thank you so much for sharing your story and congratulations on all the money you are raising!

Rhiannen xx

Susan @ Reading Upside Down said...

Hi Dainere,

I found my way here via Carol's blog post about meeting you at happychild.com.au.

I love the name of your book. I'm going to try to find a copy locally so that I can read it and write about it at the website I write for. I am humbled that you are so brave and compassionate that you are reaching out to encourage others in such a positive, tangible way.

I hope that the pain in your foot has eased since you wrote this post and that you are able to rest more easily. Your visit with your friend sounded fun. Spending time with friends and building friendships is such as wonderful thing.

Thank you for sharing. I'll be calling in often to read your inspiring words.


Anonymous said...

Wow Dainere you are so amazing. I also found my way here via Carol's blog post about you. I think you are inspiring and incredibly gifted. Your writing is beautiful. I said on Carol's blog that it is so wonderful that you are able to leave pieces of your heart all over the world so everyone can read about you and know who you are. You are a special girl and I hope your pain isn't so bad today. Thank you for sharing your story with everyone. People like you make the world a better place. xxx

Linda said...

Hi Dainere,

You have another new fan here via Carol's blog post. Your writing is a pleasure to read, although there's nothing pleasurable about you being in pain.

I love that you have channelled your experience into something that will help others. It's just wonderful. I will be ordering your book.


kim at allconsuming said...

Hi Daniere, I'm here via Carol's awesome article on you and your book. Way to go!
As a die-hard baker I'm so pleased to hear you're cooking up a storm! Now I'm craving strawberry cupcakes.
I've got four boys and my eldest has just had some pretty major surgery on both his feet. We've spent two weeks at Sydney Children's in the last month or so and I think what you're doing is fantastic.
We're really sorry to read about the pain you're having to endure, I hope your medical team can do something to help ease it.
As I say on my blog, onward!
(PS - I swear a bit on my blog so if you read it can you tell your mum and dad I'm sorry for my potty mouth?)

Julie Carpenter said...

Hi Dainere, I have just finished reading your book. I must admit I hadn't heard about you or your journey. My husband and I were shopping at Borders and we saw it at the front counter. The sale assistant recommended that we read it. Since then I haven't been able to put your book down. I have been truly blown away by your amazing courage and determination. You have continually amazed me with your outlook on life. I have found your positivity to be contagious!! It was so beautiful to read about your lovely bond with your family. It sounds like they are amazing people. You are an amazing young lady and I look forward to reading more about you. Take care and keep smiling gorgeous girl.

Ali Davies said...

Hi Dainere,
This is my first visit to your blog. One of my twitter contacts (Yvette Vignando) mentioned it so thought I would pop over and say "hi". I only started blogging myself back in January so still learning so your writing has really inspired me. Your writing is beautiful.
Isn't it lovely how technology can connect people all over the world to help and support each other.
I live in Ireland, although I am from the UK orginally. Moved here 4yrs ago to live. Am sending you lots of good wishes from Ireland to you and your family.

Anonymous said...


It is so wonderful that your book continues to touch so many people.

I complain about doing exercise even though I have no physical problems, yet you manage to exercise even with your continued pain, thankyou for reminding me to keep striving.

I hope you continue to enjoy school holidays - one more week to go! and hope you find some relief from that pain.

Take Care

xxxx Monica

Anonymous said...

Dainere - Awesome news about your book selling out at Borders Canberra! That is such a prodigious achievement.

I am sorry that the pain is so pervasive at the moment. I think of you as being as tough if not tougher than a tour de france cyclist and as you know one cyclist in particular knows the very tough and hard battles of cancer. You are a survivor and inspiration, just like Lance. I know it probably doesn't feel like it right now.

Your cupcakes sound great.

I saw the post by your Nan and Pop - oh a snake... glad Chiefly was ok... once my older brother had collected a snake from the side of the road and brought it home and asked me to mind it. It was still in the bag on the verandah. The snake, a carpet python, found its way out of the bag and came straight for me, I bravely let it pass ( whilst first getting out of its way). I was about 9 I think. It took me a long time to gather the courage to even go near the same stairs the snake went down. Hilarious, the snake was probably long gone, but my trepidation remained. I think I will have to go pat a python in a controlled environment. Glad your Nan and Pop were braver than me.

Take care.


mollymalone said...

Hiya Dainere, it's another freezing Canberra day and I'm thinking of you. Yesterday was beautiful but it looks like we're in for some cloudy days over the next week. I agree it makes such a difference when the sun is shining. It makes you feel so much more cheerful and the bones ache a little less. Canberra has a beautiful light when the sun is shining.
I came to your blog via Carol Duncan's tweet on Twitter - which I re-tweeted - although I also saw your story on Stateline. It's horrible that you are experiencing so much pain, but completely amazing that you are able to still be positive. I know how depressing and debilitating pain can be at night when it prevents you from sleeping, although I'm sure yours is worse than anything I experienced since at least mine responded to painkillers.
Like everyone else who has commented here, I find you so inspiring. I know there must be times when it all feels too much but you keep bouncing back. You are just too wonderful for words, Dainere. Molly

LisaNReynolds said...

Hi Dainere,

I too came to your blog via Carol Duncan, who just loves you to bits. I'm so glad she has shared you with us!

I also wanted to share a story with you.

Yesterday when I was reading Carol's blog about you, it was pouring with rain and the sky was a deep, angry grey. When I had finished, the clouds were clearing, and the most beautiful, perfect rainbow appeared.

I'm not kidding.

I think your strength and inspiration has the power to make even the sky happier :)

I look forward to more blog posts from you, and am super excited to read your book.

So lovely to meet you,


Coralie said...

Hi Dainere, I joined up yesterday to read your blog because I saw a cover story about you in the Canberra Weekly. I know about your book even though I haven't read it yet. The title "You have to go through a storm to get to a rainbow" has been very inspirational for me and although I am a lot older than you are I sometimes feel like a chicken but I took courage from your book and your situation and thought to myself well if she can I can too. And you know...there was a storm....and the rainbow did come out. Thanks