Friday, April 2, 2010


31st March to 2nd April 2010

Today was the day that I was being interviewed by Channel 9 television but before that exciting event I had my physiotherapy appointment with Rhiannon. At physiotherapy Rhiannon loosened my muscles again, I mentioned to her that my ankle had also been painful and she thought it is probably because I am walking a little more because I have my brace, it is not long distances but all the muscles and tendons are getting used to doing what they should so they will get a little painful at times. I gave her my goals which she thought were terrific, I thought long and hard about those goals because I really wanted them to be ones that were important to me and also ones that were achievable. The goals that I thought of were: to be able to step up and down one step, to be able to walk up and down a slope, to be able to turn around more smoothly not going off balance, to be able to go on the exercise bike for 15 minutes without getting sore and tired, to be able to walk the last 100 metres of the School Cross Country competition in May (I may have to lower the metres), to be able to run again, to be able to walk without being fatigued, to be able to do sport at school, to not have to use my wheelchair by the end of this year, to be able to use a treadmill to exercise, to build up all my muscles again and to be able to sit on the floor. For me learning to do all these things again is extremely difficult, in some ways I feel like a baby that is just learning for the first time with some of them. Rhiannon gave me a couple of new exercises they are wall squats and stepping on and off a telephone book. I am going to see her next week again and she is going to have a new program for me, this is exciting also it means I have made progress.

We received a telephone call today about my neuropsychological tests that I had in Sydney, unfortunately some of the results were not too good and this was very upsetting for me. I will let you know the full results once we have the printed report as it is much easier to explain and understand that way. They recommended a couple of things and that is that I use a computer as much as possible at school and that Mum continues to go to school with me to assist me in my day to day tasks, especially since I am unable to see Australian Hearing until early June and the hearing impairment is a huge issue.

The doorbell rang and the very beautiful Jayne Azzopardi was at the door with her camera man and sound man. The camera man Mark was wearing a West Tigers shirt, so I thought he must be pretty cool and he was. Jayne was so lovely and even though I felt very nervous she put me at ease. She asked me questions about my book and why I wrote it. I got to read part of my Blog, it was the one from 24th March, that was twelve months since my journey began. I felt a little emotional as I read it and I think Mum had tears in her eyes. I also got to show Mark my Tigers gear. Nalani and Jarrett were also part of the interview and I was so glad that they could talk too because even though I have the tumour they have had to live a pretty tough journey with us being away in Sydney and having to cope with school. It was still hard for me to believe that people wanted to hear my story but I am so glad that I am getting to tell it and hopefully more people will want to read my story and travel this journey with me. Jayne told us that the story would be on the National News on Thursday night, how incredible is that, my story on the National News. We spent an hour and half filming but like the McHappy Day commercial I was in it will only be a short story on the news. I am so grateful and appreciative of these people taking the time to tell my story to the Nation.

After the Channel Nine people left we then had a telephone call from The Canberra Times from Natasha who was also really lovely and seemed very interested in my story. Mum talked to her first and told her how I had been sick since May 2008 after Districts Cross Country when I got a chest infection but it was not until March 2009 that we knew why I kept getting sick. I then got to speak and I told her about my book and also about me getting to go to the football on Sunday and meet my favourite player Benji Marshall. She told us that a photographer would call us and come around and take some photographs to go with the story. We went to our friends house to exchange Easter eggs and that was lovely because they have supported us throughout this journey. They were telling us all about the Lady GaGa concert that they had been to and how it was not what they expected. We then came home and the photographer took photographs of me by myself and me with Mum. He said that the story would be in the paper the next day. I thought that was fantastic because it would also really promote my book which meant that I could inspire more people and then also so many more people may want to buy it and that would mean I can donate more money to the Brain Tumour Fund.

I also found out that two books have already been sold on my website, that is awesome and they have not even been printed yet. Those people will have their books sent to them on 22nd April which is the day after the book launch. My book launch will be a fabulous event and I have so many amazing, brilliant and caring people to thank for it all becoming a reality. I had to work on an invitation list for my book launch today and I hope that I am able to remember everyone who have really made a difference throughout my journey.

Now we are into another month, April Fools day, we played a trick on Nalani that a boy that is her friend called her and then Mum told Jarrett he had some hair sticking up at the back of his hair and he was all worried about it but we were only fooling him, we laughed, laughter is great medicine. Today I discovered that my story and picture were on the front page of The Canberra Times, I had thought I would be towards the back with a small picture and a small story. What a surprise this was for me. When I read the story I realised that it is quite amazing and I can make a world of difference in raising awareness of brain tumours by having my story told. The only thing was though, the dates were wrong in the story but the story itself was magnificent. Someone told me they could not even tell that my hair was a wig, it looked so natural. Underneath the beautiful, long wavy wig though my hair is growing a little but it still remains very patchy and I have some very shiny bald patches that I wish would sprout some hair but the doctors keep telling me that no hair is going to grow in these spots. On our calendar there is a quote that says 'in the dark of the cocoon the butterfly finds it wings. Even now, hope is fluttering softly in some quiet corner of your life. Not long from now it will open wide into sunlight...taking flight, touching the sky'. I really thought this was so beautiful and wanted to share it.

We had morning tea with Chris Kimball from Stateline he is going to do a story about me, I still can't believe it someone else who wants to tell my story. While he was here Mum and I told him about my journey, we shared some of the funny things that had happened as well as some of our lowest times. I am looking forward to doing the story with him next week he seems very nice and he is going to come to our house and to school.

To add to all the media attention we had a call from ABC radio and I got to go into the studio and do an interview with Louise. She was fun to do the interview with and also such a kind person. While we were doing the radio interview Stateline were also doing some filming, I am beginning to feel like a real celebrity. The interview was recorded and then after the five O'clock news it was on. I was very happy with the way it sounded and hoped that my message of inspiring other people and helping other children was spreading even further.

That night on television our family were on the National Nine News and the way that Jayne had edited it was marvellous, I even had a lump in my throat seeing myself and having my story on the television. Jayne called us afterwards very excited and hoped that we really loved the story which we told her we did and we thanked her for doing such a wonderful job. She said she thought the News Reader even had a lump in his throat after the story had aired. She also told us that there would be something on the Footy Show that night also because my favourite player Benji Marshall was on it. I stayed up a little later than I normally would to watch it but I was just too exhausted and tired from my huge day that I had to go to bed. Dad watched it though and said it came on at 11.20pm and he thought it was terrific. I am so excited now about Sunday when I actually get to meet Benji Marshall in person. He is an inspiring person also, he has come back from injury through being dedicated to his sport and he always sets a good example to other players, he is a very good role model in Rugby League as well as he is just cool.

I also went to running training and we were able to do two laps of the oval before we listened to the interview with Louise on Drive Time. The people at running training were all so very excited about my book and thought what I am doing is inspirational and wonderful. I think I am a humble person and I do not brag or show off and my goal is always to help others and I think that I am starting to achieve this through all this media attention. I now have a huge smile on my face and I feel so warm and fuzzy inside and even though I still have many hurdles to face I feel I can travel over them more easily because of these amazing events that have happened to me this week.

Today has been a peaceful family day. I worked on my Scientist project which has turned out so fantastic. Jarrett and I did an interview, this time I got to be the Interviewer and Jarrett was Howard Florey, he even dressed up, he is very good at acting, we videoed the interview and I can now hand in my project when I go back to school on Wednesday. Good Friday is a sad day and I thought about Jesus and how he gave his life to give others eternal life, he sacrificed so much and his journey was not an easy one. My life has not been easy over the last twelve months but I know that Jesus is travelling this journey with me all the way.

I will update you on Sunday after the football game, I hope the West Tigers win!!!!!!!!!!!


Anonymous said...

Dear Dainere
We have been so moved by your blog today. You had so much to tell. One minute we were laughing and the next we shed a few tears. We are so happy for you to be receiving so much publicity for your book. We know it is going to be a best seller. It is also really exciting that you are going to meet your favourite footy player. However, Pop still says, Go the Raiders !!!

We hope you have a wonderful time at the footy and that the best team on the day wins.

All our love
Nan and Pop xxx

Anonymous said...

Hi Dainere,
Kate and I got a suprise last night when we saw you on the news. It was a wonderful story. Like Nan and Pop we would like a signed copy of your book. Keep smiling and stay strong.
Love James and Kate

Anonymous said...

Dear Dainere
Loved your interview with Louise on 666 - very inspiring this was after reading your article in the paper. It was a pleasure to hear how busy you have been. We then were surprised to see you on the news that night too. Look forward to your book and enjoy your huge day at the game!
Happy Easter Dainere
Love Candace and family

Anonymous said...

Hi Dainere,

I love your blog. It has inspired me to keep on going when times get tough. I can't believe that you are already publishing a book! That is so amazing :)

DJB(an 11 year old who thinks you are amazing )
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Anonymous said...

sorry my little funny face didn't work out so well sometimes these computers can be a bit annoying. I'll try again

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