Thursday, June 10, 2010


10th June 2010

On a sunny, crystal clear Sydney morning we went to the beach for Jarrett to run, whilst Jarrett was running Mum and I went for a walk, then sat with the sun shining on us and taking in the breathtaking views across the deep blue ocean. It would be so fantastic if every single day I could have the warm and glorious feeling I had at that moment.

Today was a day I had been looking forward to because I was having lunch with the Focus Creative team and the terrific Tess. Tess pick us up from the motel and chauffeured us to their office in Paddington, there are so many historic buildings in the area which I found was quaint. Gavin came and swept me off my feet to carry me up the stairs to their office, I was introduced to Carlos who runs the business, he has also been involved in my book, he is a really wonderful person. I then met the lovely Tanya, I was excited to see the familiar smiling faces of Paul and Ben and I really loved seeing where these amazing people do their work.

They decided to take us to an elegant, upmarket Pub in Paddington for lunch, unfortunately Paul was unable to join us because he had to go back to work. The food was fresh and delicious even though I only had chips, we laughed, we talked and had a splendiferous time. On the way back to their office we called into a unique cafe for coffee and hot chocolate, it was here that Ben took a piece of basil out of his shoe which he had put in a lunch time, and he ate it! It was part of a bet with Tanya, he won ten dollars for it. I don't think anyone else should attempt this! Then when he had his coffee he was trying to drink it without the pattern in the froth getting wrecked, he did a magnificent job doing this. It was almost three o'clock when I sadly had to say farewell to them all, I had a marvellous time with them. Tess dropped us back at the motel and I gave her a huge goodbye hug.

Gavin lent us his collection of the Simpsons DVDs to keep me laughing and told me not to return them until I have watched them all. I know that every time I watch one of them I will think of how Gavin always makes me happy.

As we had not received my results from my lumbar puncture, MRI and blood test we had to call the hospital to get them, then had to wait for them to get back to us. My MRI preliminary result shows that the remaining tumour has enlarged but remains stable, there is no recurrence in the cerebellum but there are two new enhancements in the area. My spine enhancement has remained stable from last time and the lumbar puncture indicates no cancer cells but the enhancement is most likely seeding which has to be closely monitored as it is the beginning of cancer cells. Not all my blood results are back and we will be contacted by the Endocrine doctor for in depth details on these either tomorrow or early next week. They are highly concerned over my weight and if it decreases too drastically or I become ill I will need to see a doctor immediately. One of the side effects from having the radiotherapy and the chemotherapy at such high doses is a high risk of secondary cancer so more examinations may be required prior to my return to Sydney in September.

My hope was that my news in Sydney would be good news and I guess in the back of my mind I would love to hear that all the tumour was gone but considering the severity of my tumour I guess I should appreciate that I am still here to be able to inspire others and keep raising that awareness and funds.

Bill, who I told you about in my last Blog was released from hospital and is now home with his family, they meet with specialists next week, so extra prayers would be greatly appreciated. I have always said there is always someone worse off than you and even though I am disappointed with my results and new diagnosis, I feel like I am the luckiest girl alive compared to him.

The WS FM interview with Amanda and Jonesy went to air but they decided that it would make more impact by them telling the story, so the part that I recorded was not in it, but they used what I said themselves to help promote my book. I hope that this will be sucessful and that having celebrities of their status talking about my book will encourage everyone in Sydney to buy my book. I am a little disappointed that this is what they decided but it is not about me being on the media it is about raising the highest possible awareness and funds to save other children's lives and to continue to inspire and touch as many people's lives as I possibly can in the time that God gives me.

I still remain in pain especially in my knee, I am fortunate the weather here has now been kind to us but I worry about the freezing cold weather back home and the effect it will continue to have on my pain and my ability to cope with it, it is not always easy to have this constant pain but I try to put it in the back of my mind and focus on as many positive thoughts as I can, however the pain is always there.

Thank you again to everyone who has been sharing their positive and encouraging thoughts with me, you have truly helped me each and every day on this journey.


Anonymous said...

Dear Dainere,
What a wonderful day you had. You know, if it was in our power, we would make sure that you spent every day looking out over the ocean because it made you feel so good.

The people, Tess, Gavin, Paul, Ben, Carlos and Tanya are so special and caring to do all that they have to make you so happy.

Aunty Marie and all the family asked us to say thank you so much for mentioning Bill in your blog and are so grateful that you have asked so many people to pray for Bill. They think you are so beautiful to do such a caring thing when you have so many problems in your own life to deal with and said they are all praying for you too.

Yes! your results where not exactly all we hoped for either, but on the positive side you are still being considered as stable and that is good. We will all just have to pray a lot harder so next time your results improve.

Maybe, all the family or at least some of the family could come up to us in Sunny Qld during the winter for a break. That would be more kind to your aching body.

We will have to talk about this possibility when we are in Canberra next week.

We are so looking forward to seeing you all.
Hope tomorrow is a good day and you have a safe trip home.

Lots of love
Nan and Pop xxxx oooo xxxx oooo

Anonymous said...

Hi Dainere,
Having positive thoughts helps you get through each day even when you are not feeling 100%.
Tinkerbelle has been very friendly the last few days as she always comes up to me for a cuddle. I think she really misses you.
I hope your pain gives you less trouble tomorrow.
Miss you,
Talk to you soon
<3 Nalani

Unknown said...

You are truely inspirational!!!! Finished your book which I bought from a&r in Melbourne. I had never heard of you and your amazing story before walking into that bookshop. That day changed my way of thinking forever. When my 3 girls are old enough, I will encourage them to read your book and know just how lucky they are. You and your mum are very special people. I look forward to reading your blog every night. Thankyou dainere take care xoxoxo Kerryn xoxoxo

Anonymous said...

Even though the news you recieved was not what you really wanted to hear, don't let it get down! You are the strongest person that I know and I am so inspired by your courage, determination and your spirit to keep fighting. This is another bump in the road, and, like the other bumps and hurdles you have had on your journey, I know you will get over it with a big smile!
Don't ever forget how much Andrew and I love you. We think about you all the time and say a prayer for you before we go to bed.
Hope to see you when you get back to Canberra.
Take care,
Love you heaps
Lysette % Andrew XoX

Dianne said...

Dear Dainere,

What a fun time you had with your friends today, positive and cheerful, great memories to keep with you.

We all wish we could take away your pain, you are strong in your mind and heart so keep smiling. I had a friend with MS who amazed me constantly with the ways she would compensate and adjust her ways of getting things done, as each phase of her disease took hold.

I picked up the Canberra Weekly today, a wonderful picture of you on the cover and a lovely story to follow. Good job!

Take care and enjoy the rest of your time in Sydney. It is very cold here today.

Lv Dianne xxxx

Anonymous said...

Dear Dainere

I saw an article in the Canberra Weekly yesterday about you and your amazing journey, I had your book within 20 minutes and have been sneaking a read at my desk any chance I get! :-) Your story is one of so many emotions it is hard to believe you are so young with so much wisdom.
I am the mum of a beautiful 18mth old girl, to think of how proud I feel as my little one does something new I can only begin to imagine how your parents must feel about the amazing gift in you they have been given.
Your journey if far from a blessing but I can asure you, I have been blessed to read just the small snippet I have gotten trhough and have been touched deeply by your insight into this demon you have been challenging.
I can only hope one day my little girl is as beautiful as you are.

Wishing you much strength in the furture and a sincere THANKYOU for reminding me to be thankful every day of my life. I will be sure to give my babe an extra long hug before I put her to bed tonight.

Love Karen Casey, Harrison ACT.

Anonymous said...

Dear Dainere,

I read the article about you in Canberra Weekly which brought back our own memories of our daughter's brain tumor and treatment at Sydney Childrens. Our daughter was diagnosed when she was 11 years old and has been in remission since 2004, almost six years. When we were in SCH I used to wonder whether there are any kids who make it to see the 'rainbows' and I can now tell you that there are many who make it so just hang in there and you will have so much more to write in years to come. It is good that you are spending your time writing and blogging - just let your body take care of the tumor and don't try to fight your disease. Fighting drains energy which your body so badly needs to heal itself, so you are doing the right thing by concentrating on your writing skills. Even after our daughter's tumor was totally gone we still had to ride the emotional roller coaster in years to follow - so just take one day at a time and I am sure you will get to the end of the tunnel.

Best of luck and keep blogging - your story will inspire so many people around the world.

From a dad of a girl who had a brain tumor.

Anonymous said...

Dear Dainere,
What a great day you sound as though you had. We have been working away here in class getting our expositions written and now they are all done. Everyone has done a great job to get them finished.

It was sad to hear that your news was not what you wished but we know that your smile will stay in place.

It was not too cold here in Canberra today as long as you stayed indoors until 10 and went back in at about 2. The sun was shining and there was no wind. It was actually nice to be on playground duty at recess.

I have managed to find where the heater for our classroom is. It is in a different place to the other classrooms so we have been pretty cold so far but now with the inslab heating it is nice and warm.

We are looking forward to when you return.

It seems that everytime I go to read what you have been doing more people are hearing about your book and sending fabulous messages to you. You really deserve them you are such an inspiration.

Well, I will go now and wait to see you. Next week?

God Bless and say hello to your mum

Mrs Chatty

Anonymous said...

Dear Dainere
I feel like I know you... I have been reading your book. Paul has become a friend of mine and he told me all about the book project - before it went to print and then afterwards. You are an amazing writer - I have written a book but it is nowhere near as good as yours. And your family - they are just so inspiring - your mum and your dad are now heros of mine, and your sister and brother and nan and pop... you are so lucky to be surrounded by so much love in your life. I have a little baby boy and I would be so proud if he can achieve half in his life as what you have already achieved - and of course you still have a whole life ahead of you. I really hope that I will get to meet you one day soon, I might have to ask Paul to organise a book signing!
I can read the smile in your blogs - keep them coming, I love reading them!
Lots of love and hugs and prayers,

Anonymous said...

Hi Dainere,
I have nearly finished reading your book and I love the quotes you have used in it. I have put them up around the house :)
You are so resilient!
From Charli <3
p.s I go to your school :):):):):)