Friday, April 30, 2010

A VERY SPECIAL VISITOR


29th and 30th April 2010

For a change it was actually a beautiful Autumn morning on Thursday and for some reason when the weather is sunny and warm it makes you feel more bright and cheery. At school I had Australian Studies which I only attended one class of last Term, so it was all fairly new to me. We are learning about Governor Macquarie and I have an assessment piece to do with five questions about him. From what I learnt yesterday he seemed to believe that once a convict had served their sentence then they deserved to be treated fairly and respected however the free settlers did not like his attitude. The one thing I found difficult was the amount of writing in this class, you see I have difficulties with that and I also write much larger and slower than many people in my Grade, this is an effect from my tumour and the treatment. I should have taken my laptop with me, that would have made it easier, I will know for next time. After Australian Studies I then had double Mathematics, first of all we got together as a Grade and were told how the teachers expect us to set up our work in future. In my maths class we then did maths rotations, I got to do Battle Ships using a negative number ten by ten grid and then we rotated to do Mathletics. I now have another Bronze certificate, I only have one more to get and I will then have a silver one. I was so fatigued by the end of my day at recess that coming home in the wheelchair I dozed off.

We heard from the Head of Middle School and at assembly on May 11th I am going to present a speech about my book and book launch and then I am going to sell and sign books. The school supported us so much throughout last year with prayers, generosity and love and I am so grateful to them especially because the school community looked after Nalani and Jarrett when Mum and I were in Sydney. It was extremely difficult for them and they often felt really upset at school and found it difficult sometimes. I am hoping that many people in the Burgmann Community will purchase my book and read my journey because they were such an important part of it and by buying my book we are all working together to help research into Brain Tumours.

The Reverend who visits the Race Course also visited and he told me how in his sermon on the weekend he had spoken of me and how my attitude to life and my illness is inspirational, he said that some parishioners were crying at the end. He took a box of my books to sell as the people told him that they wanted to read my story. I feel so proud to think that I am inspiring people, I have said many times before I don't think I am special, I just want to help others in any way that I can.

The cold winds came up in the afternoon and my bones ached, I also had a headache that just throbbed in my temples so we were unable to do our training for Cross Country around the oval again. I am trying not to be disappointed about this but to be honest I am, next week I will try to be stronger.

I had some emails to reply to, started on some painting and made some delicious chocolate fudge brownies for our special visitor who was coming for morning tea on Friday. We also received a copy of The Canberra Chronicle and there was the most beautiful story about my book launch in it. I have been keeping all the articles and many other special items in a special treasure box so that I can look back on them when I am feeling ill or down and it will help my family remember me when I am not with them.

It was a damp, foggy Canberra morning but once the sun came streaming through the fog lifted to a glorious day. I was exceptionally excited because Mr Zed Seselja the Leader of the Opposition in Canberra and his Director of Electorate Affairs Tio Faulkner came to have morning tea with Mum and I. They were both so genuine and likable people and I felt very comfortable with them. We spoke about my book, the launch and I told them about my blister, my experiences in Sydney, Nalani and Jarrett, school, Tinkerbelle, relay for life and many other topics. I think they both really enjoyed my chocolate fudge brownies and Mr Seselja gave me a bunch of flowers they were gerbra's and he told me that they were his wife's favourite flowers. We took some photographs and I have put one on my Blog. He loved his signed copy of my book and I also gave him a special rainbow book mark that I had made. Having them visit made me feel very special and it was an honour to be able to talk to them.

After the visit I felt quite weary so after going and posting another package of my books I took it quietly by painting and then watching High School Musical 3. Tomorrow will be another special day because Gavin (one of the miracle men behind my book) and Gill his fiance are coming to visit us, as well as we have running training out at Stromlo and then are visiting my Uncle James and Aunty Kate.

I have been looking at my medical reports and handouts that I was given in hospital and I have found that the brain and spinal cord together form the central nervous system. Our central nervous system is the core of our existence as it controls our personality, thoughts, memory, speech, understanding and emotions, our vision, hearing, taste, smell, touch, our breathing, heart beat and blood pressure as well as how we function in our environment with our movement and balance. My tumour is a primary tumour which means it started in the brain, it is also the most malignant because it is a Grade IV tumour. It reproduces rapidly, has a bizarre appearance when it is viewed under the microscope and infiltrates widely. Medulloblastoma is always located originally in the cerebellum and it often spreads to other parts of the brain. Where mine was locatedwas close to one of the fluid cavities of the brain known as the fourth ventricle it extended into the cavity and blocked the cerebrospinal fluid circulation and also sent tumour cells to other areas of my brain and brain stem. Of all people living with brain tumours 23% are malignant like mine and only 1.7% of all brain tumours in everyone are Medulloblastoma however 15-20% of childhood brain tumours are Medulloblastoma but they occur more commonly in children under 8 and in a much higher percentage in boys. So I guess I am unique and I still strongly feel that I have been given this journey by God to go out and make a difference in other people's lives.

4 comments:

Carol Duncan said...

Hi Dainere,

I received your book today! Thank you! I love the bookmark, too. I will send you one that I have made ... and hopefully I will be able to call you for an interview next week. I meant to do it yesterday but I was at home with one of my sons who has a nasty cold.

Carol

xxx

Anonymous said...

Hi dainere

I think it's great that you still go to school.
Your friends must be really suppotive to go on this journy with you!!!!!
You are an amazing girl with a very warm and caring heart!!!
Every time I walk past you our look over at you, you are always smiling!!!! When I see your smile it makes my day!
My email is alicia_croxford@bigpond.com i would love to hear from you!!!
Keep on going I know that the rainbow your looking for is coming up and the storm is coming to an end!!!!
Take care dainere

lots of love Alicia

luke said...

So pleased to hear that better weather brought a better day, and it's great to hear about what you're doing at school and how you're facing the challenges each day brings :) Awesome that you got such special visitors too!

My copies of your book arrived earlier this week, and I've started reading ... love it! Of course it's a hard story to read, but your joy and strength shines even through the hardest parts ... so special. Thanks for writing it.

I look forward to hearing your interview with Carol next week ... I hope I don't miss it! Then again, I guess she'll post the audio online :)

Have a great weekend, Dainere.

dailygreenbar said...

Hi Dainere, I saw your book today at a local supermarket and have just finished reading it. Thank you for sharing and writing your story. I was diagnosed with a malignant temporal lobe brain tumour in 95 and it took me 10 years to fight it and all the effects of medication and radiotherapy. I also have hearing loss and neuro problems so at times it was like reading about myself. There was absolutely no information or books like yours available then apart from what the doctors and hospitals gave you so your book will definitely help other brain tumour patients feel less isolated.

The level of maturity and self awareness you share in your writing is amazing and it is exactly what other brain tumour patients/doctors and carers need to read. I love the storm/rainbow analogy-this is EXACTLY what cancer is about and how you are transformed by the journey and how you become a much more abled person despite any physical disability!-thank you again-Jane (dailygreenbar.blogspot.com)