Wednesday, June 30, 2010


29th and 30th June 2010

I was unable to turn myself over in bed and I had to call out to Mum several times to get her to help me, it was because my pain was so intense and my body was too weak to manage by myself. On waking in the morning I was not able to stand on either leg they both just could not take my weight and they crumpled miserably. I am so confused and frustrated, it is so difficult to have to deal with these issues, I am so limited, in constant pain and just can't be a normal twelve year old.

The weather was another polar day with below zero temperatures over night the mercury crept up so slowly during the day it reminded me of my progress. I played Upwords with Nalani and Jarrett whilst Mum got the housework done, remember she is a real clean freak, she vacuums and mops everyday! Judy, the physiotherapist from Sydney called to see how I was going and was disappointed to hear I was not doing too well. She said that I definitely need to see the orthopaedic specialist on my return to Sydney and is also talking about an appointment with a pain clinic when I am there. It seems that these side effects that I am experiencing are rare but do happen and it appears it is mainly in girls. Some people are unable to regain full movement again and only with medication two years after original diagnosis and there are some that it becomes worse in and that is her fear.

It was then time to go to physiotherapy, I had an appointment with Rhiannon at the same time that Jarrett had one with Andrew. I told Rhiannon how the whole of the right side of my body is in constant pain from my toes to my fingertips. I am so lucky to have Rhiannon because she began to loosen the muscles for me in my legs as it is important that I am able to stand if possible. It was quite painful but I muster courage when I need it because I know that it will all assist me. After my muscles were loosened I was able to stand and walk a little so that I could start on the new exercise program that Rhiannon had set me to help build my upper body strength. I have to do a theraband row where I sit and pull the band to my body with straight arms I hold it for two seconds, then I do a theraband punch I use one hand and straighten it, hold it for two seconds and then slowly return. I do ball passes with a partner who is five metres away, we roll the ball on the ground back and forth ten times. I can also do an upright row when I use the theraband, I stand on the band and pull it to waist height, I use chicken wings for this and then I slowly lower it, I have to do two lots of ten of these. These are all exercises to help me with my goal of being able to do the shotput, discus and javelin in the Athletics Carnival at School.

Jarrett received some positive news from his physiotherapy, his injury is healing nicely and he is able to go for a run at 50% pace tomorrow to see how he goes. He was so excited, he hates not being able to do his running, it is his goal to take his running to the next level on day.

After physiotherapy we went to visit Mum's friend Manda and her family. She is going to Spain with her son Niko because he was chosen for a Youth Soccer Team, Niko was in my class in Year 5 and he is a magnificent soccer player. I think that they are going to have so much fun, they said the weather is in the mid thirties, lucky them to have a break from this freezing cold weather.

When we came home I discovered that my right knee was terribly swollen and it kept collapsing under me when I tried to stand in it. My left one was much better which I was so grateful for, one leg is better than none. My hand became more painful later in the day and even to slightly bend my fingers sent intense pain from my fingertips up into my shoulder. I decided to watch The Aristocats DVD to take my mind off my troubles, I cuddled up under my blanket with Theodore and closed my eyes on and off throughout the movie.

You are not going to believe this, but our hot water system began playing up. We have all the luck, I still keep wondering if someone has broken a mirror and did not mention it! It has always being a little different to our old house but over the past few days you only had to put the hot water tap on for a shower and then it was only luke warm. Mum had to boil the kettle all the time to do the dishes. Yesterday the plumber came and he fixed it, something was wrong with a valve and the filter. We now have lovely hot water and you have to turn the cold tap on to have the shower!

I watched Master Chef last night and it was so interesting to see that Peter and Courtney were chosen as one of the three best efforts in the meal they had to cook in the challenge. They have come back strong and very determined.

I had the maximum dose of panadol I could for the day as well as using voltaren and heat. Lying in bed with the electric blanket on helps a little. I moaned in pain and just did not know how to lie without feeling pain, eventually I drifted off only to wake with pain and nightmares. I had that same nightmare that I was experiencing earlier and have not had for quite some time. It is the one where I am calling to Mum but she can not hear me and I am behind a door, but it is a clear door and she is sad and walking away, that dream really upsets me.

Today is the last day of June, the weather today was atrocious, icy winds, overcast and just plain miserable. We had bills to pay, as well as I was sending off another cheque to the Sydney Children's Hospital Foundation Brain Tumour Fund, I always feel so proud when I do this, I know that my little contributions hopefully will make that difference that I so very much desire. I don't want other children to have to suffer what I have had to face especially with the pain caused by the side effects of treatment. I am holding off on a reprint of my book just yet because I want to make sure that it would still sell and continue to raise funds and also it does not have the publicity Australia Wide that we were all hoping might eventuate. I will certainly however keep working on ways to continue to raise funds so that my dream of helping and inspiring others can keep happening.

My right side is still severely affected by pain and loss of movement and the cold makes it so much worse. You know though I keep smiling through it all, yes I do cry and at the moment rather often but I have to be strong, this is my journey and I can't give up. The light at the end of the tunnel and my rainbow seem so distant lately but if I can survive through this then hopefully they will push closer.

Jarrett went for his run, he had a few little twinges from his injury but he was so pleased to be running again. He will continue to work on his exercises and go for another run tomorrow to see how he goes. He races again on 24th July, so he has time to continue to recover without rushing it, it is also seven weeks until Nationals so hopefully he will be fitting fit and more determined to run the race of his life. Tonight we have a Cross Country meeting that will let us know all about the Nationals in Brisbane in August.

The sun has finally decided to show its face today and it does seem to brighten my heart, tomorrow we are into our second month of Winter and then we only have one more to go before Spring, Spring is about new life and colour so I am hoping that once a change of season comes, it will see my pain ease and I will feel vibrant and full of life, believe me, I am counting the days, hopefully they will come around quickly.

'May everyone find their rainbow and live their world of dreams'


Anonymous said...

Dear Dainere

I am so sorry to hear that you are still experiencing so much pain. Hopefully you will experience some relief very soon and the weather is kinder to you and warms up a bit. It has been terribly cold over the last few days.

I'm sure that you will do a wonderful job with your new painting project for Ronald MacDonald House and it is something special to look forward to.

It must have been frustrating not to have any hot water over the last few days, especially with this chilly weather.

Hoping that you have a more peaceful and restful night tonight.

Thinking of you and your family.

Lots of love
Stephanie and family xxx

Unknown said...

Hi Daniere!

I'm sorry to hear that you are still in pain. This weather is so cold and miserable at the moment, even my arthritis is playing up so i can only imagine how much pain you must be in! Just think, it's now past winter solstice so the days are getting longer which means more day light! Hopefully that means lots more sun!

I think it's fabulous you are trying to get your message out Australia wide and wish you all the best in that endeavor. I really enjoyed your book and was very happy to know that buying it meant that money was going towards such a great charity. I am trying to tell people at work about it and where to get it so that they can also support you.

Did you watch Masterchef tonight? It was so funny to watch everyone try to bake as well as the Country Women's Association. From the sounds of your blog, you could probably bake a lot better than they did!

Well keep smiling and sleep well tonight.


(p.s. I hope you don't mind me writing to you since you don't know me, but I am so proud of you as someone so young and so wise, and you are an inspiration so I will keep following your journey). :)

Anonymous said...

Hi Dainere,

Thanks again for continuing to share your journey with us, you continue to touch so many people with your strength. Like the other lady I dont know you personally however through your book and blog I feel as though I do know you a bit as well as your amazing family.

That dream you described is certainly horrible but I am sure you know that your mum is your angel who will always be there for you as will so many others who obviously love you so much.

I find your words about God also very inspirational as you have a strong faith to turn too when others may feel like turning away due to such hardship.

I wish you could share a bit of your pain with lots of people so that you have much less and so others could help you carry it.

Hope you enjoy the school holidays. I also am looking forward to Spring in Canberra, I always think of Floriade and all the beautiful flowers.

Take care,


Pandora said...

Dear Dainere (and Dainere's parents)

The National Library of Australia is interested in contacting the author of this blog with regard to its possible inclusion within PANDORA: Australia's Web Archive. We were unable to locate any contact details onsite and are requesting that if you are interested in your blog being archived that you contact us at: webarchive [at]
You can see more details on the Archive at the link below.