Tuesday, May 4, 2010


3rd and 4th May 2010

I had to write this now before I am too exhausted to lift my little fingers across the keyboard. I have had a couple of huge days at school as well as an appointment with my paediatrician.

Monday I cheerfully went off to school clutching my laptop in my lap as we wheeled along the path. This was my first Monday at school for this Term and I was ready to work hard, our first subject was Integrated Studies and we are looking at debating. We looked at appropriate ways to present and contest points of view. The practise topic that we looked at was 'Homework is really important', I think that it is because it helps us to revise or finish work that we have done in class during our lesson time, it also helps you when you are in your later years of schooling and have to study for exams. I was able to use my laptop to type some points and it was so much easier than me trying to write it or Mum having to scribe it for me. I got a whole page typed but I did find my hands felt weak just like when I type my Blog.

I excitedly anticipated my next class which was PE, WOW! it would be the first time I had done it since March last year. We were doing Cross Country practise and that was one of my favourite sporting activities before my brain tumour took over my life. My friends Yana and Chloe helped Mum to push me around the course and they found that it is not easy to control a wheelchair, they seem to have a mind of their own, in fact I would say they are worse than shopping trolley's! The course was fairly bumpy and difficult but that is what Cross Country courses can be like and I love a challenge. I was so thrilled to be part of the PE class with our teacher Mr Prowse and my friends who by the way did an excellent job for their first attempt at pushing me over the course in my wheelchair. I can hardly wait now until next Friday 14th when it is Cross Country Day at school. Not only am I getting to participate and hope to walk at least ten metres, with assistance across that finish line, I will also get to see Nalani and Jarrett run in their races. I think Jarrett is hoping to break the school record again this year and I believe he can do it and Nalani is hoping for a top three placing so she can then go to districts again, even though she is coming back from that calf sprain I also believe in her.

We returned to class after PE to do some more work about debating, I was sitting and I suddenly felt really nauseous and had a throbbing headache that ripped through the right side of my head. Luckily it was time to leave to go home at recess and when we came home I took panadol and slept. The headache remained for the rest of the day but the intensity of it improved so when I went to bed it felt like it was in the distance.

I had an appointment with my paediatrician late that afternoon and he talked to me about my book and said that every family going through any cancer treatment should read it as a resource. He said that I am an extremely inspiring young lady and that what I was doing was wonderful because it was so selfless. He checked my height and weight and I have not gained nor lost weight but my height was a little shorter. I have had further deterioration of my right side, flickering of my eyes, he feels muscle damage from the Vincristine and Sydney told me that last time and said it would be permanent, he looked behind my eyes and could see a mass but it was not a large one like when I was first diagnosed. He said the MRI in June will tell us what is going on and if there are any new changes. I have to see him again on 12th July, he said everything is all slow progress when you have what I do and that I will have good and bad days. When we told him about my headaches he thought that it could be from concentration or tiredness, or tumour growth but once again reinforced that the MRI will reveal more.

I had a dreadful night sleep waking regularly with knee and ankle pain as well as bladder issues but this is something else I have become used to, waking every night. So I slept in for a bit this morning knowing that I did not have to go to school until after recess today. I would not normally go two days in a row but because there was a presentation to help us with our debate the teacher thought it was valuable for me to be there. My headache has gone today but my eyes feel really heavy and tired. I put together my Australian Studies assignment this morning and played Upwords and then we headed off to school. The presentation was interesting because we heard different points of view about 'Who Built our School' the team I am going to be on has to argue that the parents did, others have to say that the teachers and students did, another group say the Church did and the last group say that the Government money and builders did. Luckily Mum was there to take notes, she took three pages of notes for me so I will be able to use them to help me in my group.

Wonderful news - I received fifteen more boxes of my books today and then that is all. Many people have told me that it is now in bookstores and I am looking forward to going into one and actually seeing it, I think that will be a photograph moment. I hope all my books sell out, so please buy one and help the Brain Tumour Fund, many people together can make a difference.

I have had some touching and inspiring comments from strangers who have bought my book and I feel so honoured that they have read my book and it touched their hearts and lives. I also received a beautiful card from Anna and I wanted to share the verse with you. It has butterflies on it and it says 'Happiness is a butterfly which when pursued, is always just beyond your grasp, but if you sit down quietly, it will gently sit with you'.


Anonymous said...

Hi Dainere,

The post people did a great job of delivering your card - I only wrote and posted it last night! I'm glad that you liked it.

I am so sorry to hear about your bad headaches - that is very exhausting for you.

On the other hand, I am so pleased that you are enjoying being back at school and participating in PE and in debating. I think that you would be a very valuable debating team member because you are a deep thinker. As for the cross country, I feel certain that those last 10 metres will be the highlight of the day for many people - including all of us who are following your blog!

It is great to hear that so many people are buying your book and that it is now in the bookshops. Make sure you post that photo of you in the bookshop with your books - we'd all love to see that!

Love and hugs,

Anna xox

Tracey Hawkins said...

Hi Dainere,

I hope you had a better day today without any headaches or pains.

Looking forward to seeing you tomorrow.
Tracey H x

So Now What? said...

You are amazing. I adore that quote. Oh so true. Keep on keeping on you beautiful girl x

Anonymous said...

Hi Dainere,
I bought your book yesterday after reading your inspiring story in the papers on the weekend. My daughter has nicked it so Ill have to wait till she's finished to read it. She's told me she is going to take it to America with her to share with the kids when she goes to work at a Summer camp in 4 weeks time.
You should be very proud of yourself and what you have achieved with your writing. Thinking of you.

Dianne said...

Dear Dainere,

I got your letter on Thursday, it was a lovely surprise. The little butterfly bookmark is very pretty. We seem to share a love of butterflies, they are delicate creatures that symbolize how we flutter through life.

Lachie ran well on Friday in his school cross country and Nick Vecchi ran 3rd which was a great effort. They both played soccer today, in fact 6 of his soccer team ran in the same race, they were tired and sore after the game!!

Dr Rosier is a great doctor, he was Geoffrey's Dr for many years. I caught up with him at your book launch. He is very impressed with your determination and selflessness using your wish to help others.

Have a good week, stay warm and well for your cross country on Friday. Best wishes for Jarrett and Nalani for their races as well. We are 'all' looking forward to a trip to Brisbane for the National race.

Lv Dianne xxxxxx

Anonymous said...

Dear Dainere
I bought your book today and have got to page 135 and could not put it down. You write very well. It is very inspiring and I will take it to my next book club meeting and encourage everyone to buy a copy. We live in Canberra too - meanwhile I am sending a hug to you across the miles from Weston Creek!
Paula XO