Wednesday, July 28, 2010


27th and 28th July 2010

Through the night I had to endure more pain and stiffness which engulfed my whole right side and made me weep. I wish my body was what it used to be, that of any twelve year old, one that could run, jump, dance and skip but because of my tumour I can't and now I am not sure that I ever will. I am trying to do as many normal activities as I can in a different way which is fantastic but some days I still long for what I had.

Tuesday I had school and even before starting I felt totally exhausted from lack of sleep and pain but with a smile on my face to try to hide what I was truly going through we headed off. My teacher was away and we had a relief teacher, firstly we had to copy notes for Science that our teacher had written. We were learning about another form of energy and that was electricity, once all the notes were taken we had to write at least a half page story on a day without electricity and this included batteries. I told Mum what I wanted to say and she scribed for me, I should have brought my computer, that would have been easier. Anyway, I ended up with two pages, I realised that we are so fortunate to have electricity in our lives and we should not take it for granted. It was then time for English and when the teacher walked in she announced that we were doing a spelling test. My stomach fell to my feet, I was not sure how I would cope, she told me I could spell the words to Mum and she could then write them for me. We started on Science words like environment, biodiversity, agriculturally, species, feral, deforestation and other quite difficult words. I found myself falling behind because by the time I spelt these long difficult words, the teacher had already said the next couple, Mum remembered most of them but we had to miss some out. After Science words we went onto English words and many of these were also long, difficult words. I felt so drained and a little dizzy following the test, I am quite reasonable at spelling but I needed to be given more time I think. My next subject to end the morning was Mathematics and we are learning algebra, which I love. We worked on some examples on the board first and then we were given a double sided worksheet to work on. I decided to try writing the answers which I could do as writing numbers is so much easier than words and not so tiring but by the last page of the second side of the sheet, my writing had become faint and wobbly. We had to finish any questions we did not complete for homework, I was fortunate enough to finish the whole sheet and hand it in before I left for the day. I found that I was having some difficulties seeing the board at school and I am now beginning to wonder if my eyesight has deteriorated like the rest of me, this is often a later side effect also.

I was given a beautiful card from the Teacher and Students of Year 10 Religious class at St Clares College, they have read my book and wanted to send me words of encouragement. I think this is showing me again, how many people's lives I am touching and inspiring by sharing my story. It has not been an easy story to tell but I think it is so important because how else are people going to know what it is like for a child to have a brain tumour.

After resting when I came home I played Upwords but part way through I started to feel nauseous, I had pains in my stomach and was ultra fatigued. It had been a strenuous morning and it had taken its toll on me.

We had to take Jarrett to running training in the afternoon and I spent the time doing a Sudoku puzzle until I found that my eyes became extensively heavy and I could not focus on what I was trying to do, so I just watched Jarrett and the other members of the squad doing their training.

With MasterChef finished there is absolutely nothing worthwhile watching on television at night, so I played my Tinkerbell game on my Nintendo DS. After a warm bedtime drink, I headed to bed and found that I was unable to stand on either leg, I crumpled and wobbled like a bowl of jelly, I had pain across my shoulders and into my back, I knew that I would yet again have a restless nights sleep.

I think I have a high level of perseverance because even though I am plagued with pain I still try to wake everyday and be positive. After all, every day is a new and precious day, it is important to take each day at a time and hope that it I can make it a wonderful day.

I did not have school today, thank goodness as two days in a row would destroy me. When I don't have school I am able to take my time in getting up and started. I played Upwords with Mum after she had done the house work then it was time to go to physiotherapy with Rhiannon. I think she is my favourite person at the moment because she can give me some relief and a little is better than none. Today she worked on my right knee, ankle and foot, then while she was working on my left side, Mum got to use the ultrasound machine on my right knee. My Mum is a lady with many talents now, she can give injections and do ultrasound! Rhiannon then worked on my right hand which often stops me from holding things as well as causing distressing pain. My right foot was taped for support and then Rhiannon showed me a way I can assist myself to turn over in bed. I tried some walking, I could not do it alone, I was so off balanced and I could not step properly, Rhiannon had to support me.

After coming home from Physiotherapy, I found that Asho from Planet You had sent some questions that he would like to ask me when he comes to interview me this weekend. They are terrific questions, he has obviously put a lot of thought into them. I have written some answers so that I feel more comfortable during the interview and say what comes from my heart. He said he is nervous about interviewing me, I think he will do a fantastic job, perhaps being interviewed by someone closer to my age will be easier for me also.

It is an overcast, miserable day here, it has looked like rain the entire day but not a drop has fallen from the heavy, grey clouds as yet. It is forecast to rain for the rest of the week and the temperatures are expected to drop to around an eleven degree maximum again. I fear this will not assist my muscle pains, so plenty of hot water packs will be the order of the day.

She did it again - Tinkerbelle decided she wanted to join me in my shower, what an amusing little cat she is, I have had to blow dry her again and she loves it, she holds onto my hand while I do it and purrs!

Tomorrow is Nalani's appointment with the specialist to find out what is going to happen with her knee. I hope that everything will be okay for her, I know how much she wants to run again.

'Try to keep a smile on your face and this will be the sunshine in your life that will make the shadows disappear'


Anonymous said...

Hello, Dainere..

What a busy couple of days you have had. I'm glad you didn't have two school days in a row. They certainly seem like full-on days there! You were very clever to get all your Maths done by the end of the lesson. Not a lot of people like algebra... so well done, Dainere!

I've always been impressed with the spelling in your book and "blogs" so I think you are a good speller, even if you didn't get the test finished. Must be all that practise with Upwords!

Yay for Mum! You are quite correct, she is a lady with many talents. Fancy adding physiotherapy to her skills! It is good you can get some relief with Rhiannon's help.

Not long til you get that lovely pink hearing aid. Hope all goes well with it and that it is very helpful for you.

You are also right about having a high level of perseverance... you are a wonderful example of positivity, endurance and courage. And you keep on smiling :-)

Hope the weather doesn't get too cold and miserable and that Nalani gets a positive report.

Thoughts and prayers,


Ali Davies said...


I am in awe of your courage, the honesty of your writing and your commitmnet to using your situation to help others. Please know that being who you are being, your mindset and determination is a real inspiration and a great role model for others.

I enjoy reading your blog immensely. Thank you for sharing your journey so openly so that others can benefit.

You are a star.


Anonymous said...

Just wish I could help more xxx Rhiannon

Anonymous said...

Hi Dainere,
You have been a very busy girl! I have seen some beautiful Fairy statues and next time I am there, I will pick one out for you and come visit you and drop it off! I would really love to see your Fairy Garden. Are you going to put fairy lights up? I bet it looks absolutely divine!
I am enrolling in CIT to become a Veterinary Nurse. I have to complete Certificate III in Companion Animal Services which will take me a year then onto Certificate IV in Vererinary Nursing, which will also take one year and then I will be a fully qualified Vet Nurse. I am really excited about it! Our poor Mojo has a sore tooth and he has to have X-Rays and is booked in for an operation next week. Here is a funny yours about Tinkerbelle...Mojo was put to sleep to get his X-Rays and when we got him home he was still very sleepy but he thought he was okay to get up and go for a hop...He jumped off my lap and fell straight onto his bottom...but he was determined so he kept going and ended up falling over 3 more times and then he flopped onto his belly and looked up at us as if to say 'okay I give up...Please pick me up!'. It was hillarious! Poor thing though!
We really miss you and would love to see you soon...even just for a coffee!
Any progress on your next book?
We love you so much and are so proud of how brave you are though you are in bad pain and don't always feel 100%...and you must be so tired all the time! It is so hard getting through the day and functioning properly if you don't get a good night sleep and especially if you have a few bad nights in a row it catches up to you!
Please give us a call if you ever want to chat...We will have to call you soon! I have been busy with work and running Mojo to different Vets!
Take care,
Lots of love, hugs and kisses,
L and Andrew XoX

Dianne said...

Dear Dainere,

How is your Fairy Garden going? I would love to see a picture of it when the pansies are smiling up at the Sun.

Did you get your hearing aid? Mum said it was being fitted today. That is exciting news, I hope it is working well for you. It will so great to hear everyone around you better.

Only 3 weeks to go to the Cross Country Nationals and you feel the Queensland Sun on your aching body, it will be a welcome change. I can't wait either.

Take care and stay warm,

Lv Dianne xxxxx