Tuesday, May 18, 2010


17th and 18th May 2010

On a day that the sun just could not push through the clouds I went to school and we had Chapel first off. As we sat quietly and focused Mr Thorpe talked to us and then showed us a video about a man who went walking into a forest on a glorious morning with his young son in a backpack. As they walked he felt so drawn by the astonishing beauty and calm of his surroundings, then it clouded over and drip, drip, drip came drops of rain and they became larger and then more intense. His young son on his back started to cry as it scared him but as a father he comforted him and told him that everything would be alright, that he would protect him and keep him safe and get him home. He went on to talk about how in life we often have storms cross our path but we should know that God is always there walking alongside of us through that storm. I looked over at Mum and I saw that she had tears running down her cheeks and then I saw my teacher from last year was the same. I felt a lump form in my throat and I thought about this story and about my storm and how Mum had been there telling me that she was there and she wanted to make everything right. I then had little, crystal tears drip down my lashes and onto my cheeks. The story really touched all three of us and we were all connected by my journey, it was one Chapel that I will never forget.

After Chapel it was time for PE and we are now doing touch football. I bet you are wondering how I could do that. Well as a drill we had to go around the oval and pass the ball between three people and I did it. I found that I don't have much strength and can not pass the ball a long distance but I did it and then I was also able to catch it. We then did an activity where we were on teams and I was on the blue team and we had to pass the ball and then try to tip people on the other team and then we swapped places. The ball was passed to me and you could only take one step, but I had to just move roughly one step in my wheelchair, I did not tip anyone but I really enjoyed it. When the other team had to tip us, Mum was a little too slow at maneuvering me and we were tipped. I really think where there is a will, there is a way and I have proven again that you don't just sit back and give up, you can do anything you put your mind to. I am still in pain from the Cross Country and doing the touch football stirred it up a little again but I am not going to sit back and feel sorry for myself.

Following my excitement at PE we then had Insight and we were reading over and marking other students expositions. I found that to have an excellent exposition you really need to use persuasive language or your exposition loses its impact.

I have a new chair at school it is like an office chair and it is a swivel one, it does not have wheels which thinking about it now, it would maybe be better with wheels so I can move on the carpet. It is so great though to have a chair that is mine, it makes me feel like I am part of the class.

My head became really painful in the afternoon it was all over the outside and inside of my head and which ever way I put my head it felt awkward. I am also finding that I am unable to wear my wigs because as my hair is growing with a wig on it makes it itch. I also have what is like eczema in one large spot on my head and it is awful. My hair is still only patchy though and I have three distinct bald, shiny patches but hope as my hair grows longer I will be able to comb it over these bald patches. I guess I am never going to have that beautiful thick, long curly hair that I had and people recognised me for.

We received a letter from my oncologist to go to the Australian Paralympic Committee for me to receive my classification as a disabled athlete. He said that my High Risk Metastatic Medulloblastoma and the treatment for it had caused severe and devastating effects to my balance, hearing and coordination and they were irreversible.

I snuggled into bed which now has an electric blanket on it and it warms my muscles and bones and provides some relief. I woke several times during the night though with pain in my scar on the top of my head and stiffness and pain in my right knee and ankle. Mum looked after me and helped me go back to sleep.

Today I did not go to school until after recess which was a good thing after my restless night and we watched a DVD about the building of the Great Pyramids, we had a sheet of questions to answer, I was so slow with writing so Mum took notes so that I could answer the questions later and then the teacher gave me the DVD to take home to watch to also help me. We are going to watch a You Tube video about Aliens built the pyramids. We will then be doing an exposition about who we think built them. To do this we start with a big question and then five little questions and this helps us put it all together.

My tongue felt so unusual and painful today and Mum discovered that I have ulcers that are the same as the ones that I developed during my chemotherapy treatment, we treated them and I hope they will heal as having them make it quite difficult to eat. When I had the ulcers during chemotherapy they took a while to disappear. They are often a sign of low immunity as well so perhaps I might be coming down with something, there are many people off sick at school at present with colds and stomache viruses.

Tonight Tass and Gloria came to get another box of books, Tass has now sold 130, he is a legend and my number one salesman. I am so lucky that they are helping me in my quest to sell my books, raise that awareness and those desperately needed funds. Gloria showed me a picture she had taken at Angus and Robertson in the City and my book was on the best sellers shelf and beside Julie's from MasterChef, that really lifted my spirits and made me so proud.

The eczema in my head has worsened and is really bothering me, luckily I don't have lots of hair so we can rub some cream on the affected area. How strange I seem to be getting some new irritations like my tongue and head, it is almost like I am being tested to see how much I can cope with.

I have written emails and letters over the past couple of days, played Upwords, drawn a picture and helped Mum with her packing.

Life is so unpredictable, there are storms, there is sunshine, there is sadness and joy, if we treat our life as a gift that each day we unwrap a new and wondrous layer of paper we will be in awe of the surprise within.


Anonymous said...

hi dainere i am so looking forward to seeing you in sydney. i am hosting an event this thursday night and we are selling your book for 20 bucks each. we plan to sell 100 books. i will let you know how it goes on friday.
all my love my sweet friend, paul g.

Anonymous said...

Hi Dainere
You are becoming quite a versatile sportswoman. Sounds like you had a great time playing touch footy.

We are so pleased you have your electric blanket to keep you warm at night. What does Tinkerbell think of it?

You musn't have very many more books left to sell. We hope you can get a reprint. Not too long now before you move into your new home. Bet you are counting down the days.

The video at chapel must have been very moving and we can just imagine how Mum, your teacher and you felt.

You must feel pretty special now that you have a brand new chair at school. That would be more comfortable than sitting in the wheelchair all the time.

You are right, life does have many ups and downs but somehow if we are strong we always seem to get through, especially when our family is there to support us.

Nan and Pop xxx ooo

Dianne said...

Dear Dainere,

Sometimes when Winter weather sets in and we sit inside heated houses our skin dries out and dermatitis, or worse eczema, become a real problem.

I hope the packing for your house move is going well, you may be finding the excitement a little stressful without realising it.

Rug up well for tomorrow at the Cross Country, hands, head and feet. I look forward to seeing you there. I better go to bed - falling asleep on the keyboard!

Lv Dianne xxxxx