Friday, July 9, 2010


7th, 8th and 9th July 2010

Before I write all my news I just wanted to thank the many people who are new to my Blog as well as those that have been following for ages who have written the most heart warming messages that give me a rainbow in my life when I read them.

I wish I could triumph over my tribulation with pain but another night I have suffered ending up in tears and seeking some relief. My right side has always been the most affected but now I am suffering with similar pain on my left side, to say it is frustrating is an understatement and my head is spinning from trying to work out what I can do other than try to remain positive to remedy it. However I should not complain for I know out there are people who obviously suffer far more than I do.

Wednesday morning was frosty and glacial however the sun began to shine brightly and the air warmed to a more bearable temperature. Whilst playing Upwords I had heat packs on just about every part of my body to try to warm my bones and muscles and ease my wretched pain. It does assist for a short period of time but the pain also returns and often it seems so much more intense. Today it was not me for a change who had a doctors appointment, it was Nalani, who had to see the Sports Physician following her knee injury from Zones Cross Country which has been slow to repair. The doctor was running forty minutes late which was not too bad considering some of the waits I have had in Sydney for my appointments. Following a thorough examination the doctor concluded that Nalani required an MRI which will hopefully assist in a diagnosis. I chuckled slightly, telling her that a knee MRI is a breeze, it only takes about twenty to thirty minutes no where near as long as my brain and spine ones that take anywhere between an hour and an hour and a half. What they are investigating is the possibility that she has something called Osteochondritis Dissecan which they call OCD for short, it is a knee disorder where fragments of bone break off from the knee joint surface, it affects the articular cartilage which is the smooth covering of the ends of the bones and subchondral bone and that is the bone underneath the cartilage. OCD can be caused by a trauma which would be her running injury and where it is injured has poor blood supply. This condition often happens in teenage years and can happen to around 17 girls in every 100,000. If the MRI shows this then the doctor can make a decision on what treatment to use to help restore her knee. This may not require surgery but would have to have intensive treatment for six to twelve weeks. The other possibility is Patellar Tendinopathy and this is when the tendon in the knee joint comes under a large amount of stress and has a miro-tear and collagen degeneration. Treatment for this is slow and may require many months of rehabilitation to help it disappear or sometimes surgery is required. These were the main two things the doctor suspected but said if it was a meniscus tear or anything else it would show in the MRI, Nalani goes for the MRI next Wednesday. I hope that her first MRI is not like mine, because with my first MRI they found I had my brain tumour.

It was a busy day Wednesday because then in the afternoon Nalani and Jarrett had hair appointments, once again I sat waiting while they had their hair cut wishing I too was having mine done. I do have hair, just hardly any, as well as areas that are totally bald which is also called alopecia. Mum said that perhaps next school holidays my hair will have grown long enough to have a little trim because it is growing uneven so it may need to be evened up and then it will grow beautifully.

The day was so tiring and when I am tired my pain seems to be all consuming, I had the most terrible headache on the right side of my head and I had to lie down because it even made me feel dreadfully dizzy and the only way to stop it was to lie down. After an hour and a half it settled, it was still there in the distance but a definite improvement so I helped mix potatoes for Tuna Casserole for dinner. While I was watching MasterChef we received a text message from Tess about giving approval for an article written by Carol from ABC to be placed on a new website for parents. The website is and the Blog Carol wrote can be found at What Carol has written is so touching, she has been instrumental in helping promote my book through her media contacts and she is a wonderful person with a beautiful heart. So many people who have read Carol's Blog have now commented on my Blog and we have received a new influx of orders for my book. So my wish to inspire and inform other people continues and this truly gives me hope for a better future for all the other children who may have to travel my journey.

Even though our evening had all this excitement, my pain was not reduced it kept Mum and I awake often throughout the night and into the small hours of the morning. My knee locked up and it took ages for Mum to be able to loosen it so I could move it freely again and my right foot ached and ached until I felt quite ill. Every morning though when I wake, I try to put the best smile I can on my face and I am determined to face the day in a positive way despite what my night has brought.

My morning on Thursday began with my upper body exercises, a feeble attempt to ride the exercise bike which I failed miserably on because my knee kept locking and my right foot was too painful to turn the pedals. I will be honest, I cried because I want to be able to try to live my life how I want to but these things stop me and the pain just takes away so much of my strength. You have to look ahead though and perhaps the next day I will have a small improvement. Mum told me that once for work she went to a course and they learnt about a thing called KAIZEN, it meant a little bit of improvement every day. I can't expect to move mountains in a day but just one little step would mean the world to me.

I played Upwords, Junior Buzz Monster Rumble and typed up the footy tips for this weeks round. The day flew by and then it was time to log onto the computer to watch a very special event, Gavin and Gill's Wedding. They went to Borneo to have their Wedding and were able to use a webcam so that all their friends back home could watch it. They were supposed to have the ceremony on the beach but unfortunately it began to rain so it had to be moved indoors. I was so thrilled when Gavin showed me that he had taken his rainbow book mark I made with him to have with him on his Wedding Day. Finally it was time for the bride, Gill to arrive and they played the song I'm Yours from packed to the rafters as she made her way towards Gavin. I think I have said before she looks like a princess, well tonight she looked like the most beautiful fairytale princess you could ever imagine, her dress was exquisite and she had a large yet delicate white flower in the side of her hair. The ceremony was so enchanting, they wrote their own vows and had two poems read as part of it. They were so happy, it is the most beautiful wedding I have ever seen. I know that they will live happily ever after just like in all my favourite fairy tale stories. I hope that once the rain stopped that a brilliant, breathtaking rainbow filled the sky for them.

The Wedding finished, it was at the end of Master Chef and I was surprised to see that the elimination was between Aaron and Marion, I think Marion has been a favourite from the beginning. They had both made sate but when I saw what they looked like Aaron's looked far more appealing than Marion's. Then the announcement was made as to who would leave and in what I would say is the shock of the series, Marion had to go. I think it has left the competition wide open now, so it will be extremely interesting from now on.

Since the story on Happy Child I have had four more orders for books, two orders for one book and two for two books, this is incredible, I hope they continue to come in, I feel now like I can continue to make a difference.

In a run of good news for a change, we have been contacted by Planet You who wish to do an interview with me. They produce a series of videos on issues that are important or of interest to young people. They have a website and it is I am going to be interviewed by one of the young journalists called Ash, I am so excited and honoured because they think that I am an inspiring person to other young people. I just see myself doing something to help other people because I don't want them to have to go through what I have to or if they do then they can have a better understanding of it. There is just nothing available for young people with Brain Tumours and if I can just help in this little way, well little things can lead to big things and through my fund raising maybe one day, everyone will be cured and the treatment will be so much less devastating. I think doctors want to be successful when treating diseases and that is great but sometimes they don't think about it as clearly as they should because what they think is success only gives the person they treat some extra time but with an extremely poor quality of life. I think that quality is far much more wonderful than quantity!

Today has been overcast, almost melancholy weather so we packed up and went for a drive to Brand Depot, it does not have many shops but it is much quieter than the major shopping centres and there are some interesting things to look at. I bought a High School Musical 3 book, Nalani got herself a skirt and top and Jarrett found a bargain he bought a Green Day and a My Chemical Romance Poster for only $2.50 each. We had fun being together, Mum, Nalani, Jarrett and I and just strolling around the shops can be fun in this weather. On the way home we called into Magnet Mart and got some potting mixture and pansies so I can make a start on my fairy garden. In the corner there were four pots of decreasing size, like a pot feature and I am going to plant the pansies in them, pansies are pretty because they come in a kaleidoscope of colours, almost like a rainbow.

My pain continues and I tried to walk a few times but have collapsed again, when I collapse I then experience more pain. I have a slight headache again and I feel like my scars are thumping and tearing apart but they are not, it is such an unusual feeling. Look at me complaining again, I just want this to all go away. The other day my ears both rang more than ever and then for about half and hour I just could not hear anything at all, it was terrifying and as suddenly as it happened, I could hear once more, well the same thing has happened again today but this time it was for about forty minutes. I don't know what is going on, this is something new and foreign to me. I have now found that since these two episodes the hearing in my right ear seems worse than it was before with everyone sounding like they are whispering to me when I listen with that ear and they also seem to sound like their speech is all broken up. I wish I had my hearing aid like I was supposed to, I can now hardly wait until 30th July when I have it fitted, I am scared that my hearing has become worse and that maybe I won't be able to hear at all in my right ear.

Three days was so much to write about, yesterday I just did not feel well enough to sit here and type, now today I have paid the price. My hand aches, my head is in a spin and my pain is overwhelming.

'On days that are grey if you search for the colours of the rainbow, one by one your sadness will disappear and the sun will come shinning through'


Dianne said...

Dear Dainere,

You've had such a difficult time with the cold weather these last few months, roll on a warm and sunny Spring.

I had a look at the Planet You website, it looks like a lot of fun and a great way to get information on issues out to young people in the community.

Good to hear Nalani will have an MRI, once the Dr gets a look inside her knee she can move forward to repair and recovery. Hope to see her up and running again soon.

Masterchef is getting more interesting by the day! What a shame about Marion's elimination, they are all as good as each so let's see who is still standing at the end!

Lachie and team finished top of their Kanga Cup pool but got eliminated in the semi final. It was a big week with cold 9.30am games and lots of bruises. It was a good tournament though, a great way to develop the Team.

Stay warm and I hope the Sun shines so you will be feeling less pained soon.

Lv Dianne xxxxx

Ali Davies said...

Hi Dainere
I loved the quote you finished this post with. It brought to mind this quote - "Keep your face to the sunshine and you cannot see the shadows" - Helen Keller.

Jodie at Mummy Mayhem said...

Hi Dainere

What an amazing writer you are, and an amazing girl.

I hope the weather is warming up for you. It's a little warmer here in Sydney today, so fingers crossed for you.

My family and I were in Canberra recently - I have 3 boys (8, 6 & 3) and they loved it so much, they want to go back again soon! The autumn leaves are so beautiful there.

Take care, and I hope you are feeling a little better now since you wrote this post.

Anonymous said...

Dear Dainere, I just heard about you while listening to ABC radio. I once had a beautiful little boy called Matthew who faced a similar journey as yourself, unfortunately he did not survive. Like you, he was very courageous and faced each day with a positive outlook. He inspired many people in his short lifetime, (6years), and I remember him always with such love and tenderness. I am crying now as I write this, even though it is more than 20 years ago. I wish you and your family the very best and hope you will win your battle. Bronwyn

despina said...

hi, I heard about you thru Planet You. Congratulations on your determination. I can only guess at your inner strength. I'll be following your blog from now on. Are you on Facebook?

Marianne said...

Hello, Dainere.... today i heard about you through a re-play of an interview with Carol Duncan on the ABC. You certainly are one amazing young lady!!

I watch for Canberra's weather each night as I have a son living there... so now I'll be hoping that the weather gets warmer and better for you, too!

I hope you have a good visit with your paediatrician tomorrow.

Keep up your blogging... it (and you) are inspirational!