Thursday, May 6, 2010


5th and 6th May 2010

On a day that felt like the middle of winter instead of Autumn with icy winds and almost snow like clouds Mum and I bravely headed off to school for my third day in a row at school in a week, normally I go every second day but this week was different and I am afraid that it has really made me extraordinarily fatigued. On this day though it was my favourite lesson and that was art electives, but before art we had an SRC meeting to put ideas forward for our SRC to take to the Principal and selected teachers. There were some interesting ideas of more sport, discos, uniform and then I was asked if I would like to add anything so I said that I think there needs to be a ramp up to the oval as the only access is via stairs, going up the steep side of the oval which is rather dangerous or going around the really long way which is also very bumpy but my idea was not only for me I was thinking of a girl who is on crutches in a lower grade and also if anyone is actually injured on the oval the difficulties in getting off also. The two SRC representatives thought this was a really terrific suggestion and it will be taken to their next meeting. Then it was time for art, we have a new teacher and she seems really nice, we are now in the portable building which is the temporary art room at present it was quite cold in there and echoed just like the science lab but I was not going to let that bother me. We worked on doing printing, we first had to look at our fingerprints which are unique to every person and then we had to draw on foam a pattern similar to a fingerprint. Once that was finished we used ink to do a print on paper. I used pink ink of course because that is my favourite colour and I was delighted with how mine turned out. The teacher said we are going to make a wall of 'most wanted' using our prints, it will certainly brighten up the walls of the building.

Whilst I was in art I had terrible pain in my spine and knee but even though I felt like crying with it I ignored it the best I could. I so don't want my pain and limitations to stop me from doing the things I love the most. But on the way home, I cried as the cold air hit my already sore body. A couple of hot water bottles, some pain killers and a warm cup of tea eased it a little so that it was more bearable.

I came home and had a sleep, as I said I feel so exhausted this week it is almost like how I felt going through chemotherapy and was so energy depleted. After my sleep I signed some more of my books ready for the assembly on Tuesday at school and answered some emails that people had sent. In the evening Tass came over, he has been an amazing seller of my books, he has sold 70 already and he came to collect another box. He deserves a gold medal for his effort!

With a drooping, flickering right eye and increasing pain I went to bed in the hope of sleeping and finding some comfort. I slept for a while but woke with my bones aching again, slept for a little and then woke again and then the alarm went off.

Today I did not go to school I rested instead. I had a lovely visit though from Tracey Hawkins a fellow author (how marvellous does that sound), we spoke about my launch, books in general, what she is up to now, family and many other things. I gave her a special signed copy of my book and we are going to catch up again when we move house. She also gave me a pen with the words Special Friend on it and on the box were the words 'When friends meet, hearts warm' how true is that? I am going to send some of my poetry to Tracey for her to read, she can also give me some tips on whether it is good or not.

Then in the afternoon after I had had a sleep again we talked to Carol from ABC Newcastle she is one of the people who worked so enthusiastically and with a heart of gold on my book. It was just awesome to actually talk to her and I felt like I was talking to an old friend. She is so tender hearted and I really liked her. The story will be on ABC Radio Newcastle tomorrow.

We had to go to running training for Nalani and Jarrett and by the afternoon the weather had turned so arctic again and I was unable to go for my walk around the oval in my wheelchair, I wish wheelchairs could have those heated seats like some cars do, that would make a huge difference in places like Canberra.
I have put a picture that the wonderful Tess took at Angus and Robertson bookshop in Sydney, can you see my book on the shelf with all those other famous authors? How marvellous is this and now that it is in shops my story will be able to reach more people and hopefully inspire them and of course I know I always mention this but raise awareness and funds for the Sydney Children's Hospital Brain Tumour Fund.
Tomorrow is Starlight Day and they help seriously ill children by granting extremely special wishes just like mine and my wish is also helping many others and that is the best wish in the whole wide world. I hope that they are able to raise the funds they are hoping for just like I am raising funds for a cause I feel so passionate about.

Tomorrow is Dad's birthday, but we gave him his presents tonight and he loved the picture frame that I did for him, he is going to take it to work so that I can look over him every day whilst he is working. He got quite a few clothes which he needed, a men's nivea shaving set and an Iron Maiden CD, he likes them. I don't though.

'Love is understanding through difficult times, being able to laugh to keep from crying and always being there for each other'.


Nalani said...

Hi Dainere,

I think you are amazing how you always think of others. A ramp is a really good idea if someone injures themselves on the oval. From experience it is very difficult, so a ramp would be beneficial to many people at school.

Keep up the great work.

Lots of love
x x x

Anonymous said...

Dear Dainere
Your book has now reached one store that we know of in Queensland, the Angus and Robertson bookshop at Northlakes.

We hope they end up displaying them up here too for a Mothers Day present as it is such a special and inspiring book.

No more news from us as we spoke to you today but we did forget to wish you luck on Friday in the Cross Country. We know you will be so determined that you will cross that finish line walking.

All our love
Nan and Pop xxx ooo

Anonymous said...

Dear Dainere,

Hi, it's me, Aimee and I am having a great time at Radford. We just had cross country and I came 43rd - shame, shame, shame.

Anyway just yesterday, I bought a copy of your book and I have finished reading it. I think it's very interesting and very good. I have learnt a lot about chemotherapy, according to your book and you are the most bravest and strongest person I have ever met!

Burgmann Anglican School is such a good school and will be the best I have ever been in. The people there are very supportive and I hope none of them are giving you a hard time. If they do, they better watch out!!!

Thanks so much, Dainere, I have learnt a lot from you!!

Love Aimee xxx