Friday, April 2, 2010


28th March to 30th March 2010

This week has been so full of appointments and some magnificent developments with my book so I have decided to split it up a little so you can take it all in in smaller amounts. But before I start telling you about my week I would like to thank the many new people who have joined my Blog and who have written such encouraging and lovely comments. Some of you I know and others I don't but the fact that you are following my story warms my heart and makes me feel that I am not alone.

Sunday was like most other Sunday's starting with running training and going for a lovely walk in the Canberra bushland, we are so lucky to have so many open spaces that people can go walking. The rest of the day was quality time spent with my family shopping and playing board games then we went to Palm Sunday Mass. Easter is always a time for reflecting and thinking about our lives and having hope in our futures. Today I had throbbing along the gaps between my fingers which was so strange, maybe it is from all the typing I have been doing lately. My right knee had not been cooperating with me today either is was painful and swelled up like a hot air balloon even when wearing my brace, so I was unable to do my exercises or walk.

Monday was a wet and miserable day and I had my paediatrician appointment. We spent fifteen minutes driving up and down the Calvary Hospital car park trying to find a parking space but it was useless, people were mounting the gutter and parking where they shouldn't. Mum did not want to do the wrong thing so we kept looking and eventually we found a spot which was a long walk up the hill to my appointment. My appointment was interesting, I was weighed and have put on two hundred grams but the paediatrician was hoping it would be more because when he plotted it on the chart I am below the lowest line on the growth chart. My height has stayed the same as what it was when we were in Sydney at the beginning of March. He noticed that there is still fluid sitting around my knee and felt that it will all take time as I have been told by all the other doctors. When I have my next bloods done when I go back to Sydney in June he also wants them to check for celiac disease. He looked in my eyes and noticed they are still flickering and he felt there had been no improvement and then he looked in the back of my eyes, he could see no major mass but there is still some mass there which is the remaining tumour. He wants to see me again in six weeks to check on my weight, behind my eyes and the flickering. After finishing there we went to have my bone age xray done. It is such a simple xray what a pity MRI's can not be that simple, one picture taken of one of your hands. It is amazing to think that through this one picture they can then work out what your bone age is. The results would be ready to collect later in the week, hopefully they will be not too bad. I felt really tired today and found myself doze off when we came home, I woke with a fright after having that same nightmare again that I have had before.

Tuesday was Conference day at school and everyone was very excited about it. We were put into different colour groups and had to rotate around activities. My first rotation was about Mental Health we learnt about how important it is to talk to people if you are feeling down and different ways that you can deal with it. I came up with the suggestion of writing to express your feelings that is because this is what has helped me through the toughest journey of my life so far. We then moved on to a Hypothetical presentation about young people and decisions they made. It was really interesting because the police were there also telling us about the law and how it worked when young people make choices which are not always good. We learnt about music downloading, facebook, fake ID's, what Civic is like at night time, what happens if you tell a lie to your parents and then are late home or don't come home how long it takes to track your movements if you have told them you will be one place and then go somewhere else. It was then recess time and I spent a little bit of time with my friends which was nice, but I still feel so different to eveyone else and then it was time for the next session. I got to go to the Body Shop Workshop which was fantastic, we learnt about how to take care of our skin and we were able to try some moisturiser, I tried the mango one it was so smooth and it smelt delicious. My last session was relaxation, I could not do most of the activities as they involved standing up and doing actions but at the end there was a visual imagery one and I was able to do that and I almost fell asleep. Today I also handed in my Life Pathways and Social Futures project which my teacher thought was marvellous and she gave it to our Principal to look at. I hope that through my research and my own life experience being in a wheelchair and having a hearing impairment that I can help make our school more inclusive for children with disabilities.

Today I received the most precious gift from my teacher, she had a friend visit Mary McKillop's grave and she had a medallion of Mary MacKillop and she placed it on her grave. The reason this gift is so extraordinarily special is because Mary MacKillop is being made Australia's first Saint on 17th October this year by Pope Benedict XVI because she showed so much compassion and love to all people and miracles have occurred for people who pray to her. Imagine if through this precious gift a miracle occurred for me, I have put it on a chain and keep it close to me constantly.

Today was also the start of miraculous phone calls, people wanting to do interviews with me about my book, that is so amazing because I don't really think I am anyone who is extra special I am just telling my story and hoping to make a difference by inspiring, giving hope and telling the truth of what it is like to live with a Brain Tumour. When I made my wish the book was about me having it to treasure for the time I am here on the earth and for those I love to have it when I am gone. It was also about raising money for children like myself to help them and maybe one day find a cure. It is so exciting to think that so many people would like to know about my book and by having the interviews I can tell people about it, but it is tricky for me also because I am not too good at speaking, I know what I want to say but it does not always come out, that is why I love to write, my hands can do my talking.

In the afternoon I went to running training but it was raining, actually it was pouring the water was flowing like a river through the car park, I think that people who run in the run must be extremely dedicated. Jarrett and Nalani both ran, they were soaking wet at the end up they said it was great fun. I stayed dry and enjoyed a game of Upwords with Mum.

Life is like a garden where every small act of kindness and every thoughtful gesture is like a tiny seed and when these seeds are planted wonderful things can happen. The people who have shared kindness and shared their kind thoughts with me have brought a garden of happiness to me.


Anonymous said...

Hello Dainere
Great news about the book! I will ask anyone I know to buy one, the more we raise the better for anyone in the future going through what you are. I have been following your journey through the blog and think of you often. Our love and prayers are with you.
Auntie Gail and Uncle Kevin

Anonymous said...

Hi Dainere,
it's me, Aimee again. I hope you are having a great day today.
I still can't wait till your book comes out and I am still waiting.

Love, Aimee.