Saturday, May 29, 2010


27th to 29th May 2010

I was determined to go to school on Thursday even though I was still in distressing pain, I don't want to let it destroy my life so I fight through it even though it tires me dreadfully. When I arrived at school it was Australian Studies and we were learning about Yagan the famous aboriginal resistance fighter, the leader of the Noongar people, it was extremely interesting because in the end the white settlers ended up killing him and chopping off his head, it was smoked and pickled and sent to England, his skin was also taken off his back because this is where his Tribal tattoos were. His body was supposedly buried but has never been found. He was respected by both his own people and many Europeans for being so determined in the way he defended his people. Mum took notes for me because there was no way that I could keep up, I am too slow to do note taking during presentations. I received my assignment back that I did on Governor Phillip and I achieved an excelling and I was very excited about that and the comment that the teacher gave me was that I showed an excellent understanding and good personal reflections on the questions.

After Australian Studies I had mathematics and we had a maths test. I found it extremely difficult to concentrate and focus on it. I ended up with a headache that went thump, thump, thump in my temples and then all the work in front of me went all blurry and I could see two of everything which is called double vision. The maths test went for a double period and it seemed to go so slowly, I got two pages of it completed and felt more fatigued than I have doing any other activity. On the way home in my wheelchair I broke down and cried, it had all just been too much. This is one of those times when I truly wish I was the same person I used to be, the one who would have coped easily with a maths test and would have flown through it. My head was still throbbing and thumping almost like bomb that was going to go off any second. So I lay down after having a lovely, warm cup of tea and I feel fast asleep, I did not wake for another hour and when I did I felt a little better but the headache was still there in the distance.

In the afternoon even though I was still not feeling too well I was excited to have an interview with Natalie from Canberra Weekly. She was really terrific, she asked me numerous questions about my book, my book launch and my Brain Tumour. Her photographer then took some photographs of me holding my book like I was reading it, to make the light more effective he used a piece of aluminium foil inside the book and then it reflected the light onto my face and made it look fantastic, I thought that was very clever of him. The story will be in the Canberra Weekly the week of 7th June, so keep an eye out for it. I am finding that the more I talk about my book and my story it really makes me more determined to have my book reach as many people as possible so that more research can be done to help children with brain tumours because even if I can't be helped I would love to be known for helping others through my own battle.

That evening it was the Woden Harriers AGM and presentation night, when we arrived I found that I had dreadful pains in my chest and I became quite worried about them, they were like a stitch in between my ribs. Mum rubbed it and that eased the pain a little but it was still there bothering me throughout the meeting. My night was brightened though when Jarrett took out three awards: one for Cross Country U16Male Runner of the Year, one for Track Competitor Male U16 of the Year and the last one for the Most Promising Athlete of the Season. Then we were all surprised and excited when Nalani took out two awards: one for Cross Country Runner Female U18 and Track Competitor U18 Female. What a lovely achievement for her and it really boosted her especially with her injury at the moment. I know that she is going to come back better and stronger than before. The evening ended with smiles all around and I was so thrilled that Nalani and Jarrett had won special awards, my chest was still painful when I retired to my lovely, warm bed but was hoping it would ease because the next day we were moving house.

Friday arrived and I woke with only a little pain all down my right side but that was not going to ruin the day that we moved. The removalists arrived at 9am and started quickly and efficiently moving all our boxes and furniture into the removal van, I did hear a few huffs and puffs though as they carried some of the items down all those stairs. As our house became bare I thought about all the memories that I had from that home, especially the ones of being ill and one night sleeping in my bed and the next been flown to Sydney for emergency surgery. I hope in our new house we can have many happy memories that make us smile and strong in the future what ever it may bring whether it may be good or bad. By 11am all our furniture was packed and it was time to head to our new home. Our new home is not quite as roomy as our old one but it has a cosy feeling and of course there are no stairs. It was actually quite overwhelming finally being there and I felt very teary as we began the task of unpacking and setting up our new home. My bedroom is close to Mum and Dad's which is wonderful because I wake regularly during the night and Mum comes to look after me. The first thing I put up in my new bedroom was my Benji Marshall photograph frame that Mark the exceptional camera man made for me, the photograph is above my head, so I know that Benji is watching over me always, then my bears all had to find their special places in my room, my clothes went into my wardrobe and just fitted and I filled my shelves with all my significant treasures. We spent the rest of the day and into the evening setting up the rest of the house, Mum and Dad finished it all off by 11.30pm last night, we were officially completely moved in.

During the night I heard rain tumbling down outside the window and in morning it was still pouring down, there were huge puddles rippling as the wind blew across them and the sky was grey and dismal. With the rain, came the pain, my right side again caused me misery but again I will be courageous try to fight it. Today was the day of my in-store book signing at Borders in the Canberra Centre and I wanted to be able to meet people with a smile. Jarrett had a Junior Point Score Cross Country Race at Campbell Park so we drove there, dropped him off to warm up and went to Borders. The Manager Kevin was awesome, he explained what would be happening and said they were so excited to have me there. I was a little nervous but really enthusiastic about it all. I had developed another headache similar to the one that caused me grief at school on Thursday. It was in my right temple, it was thumping and making me feel ill and it made me have double vision again which is not what I needed when I had to sign books. You know me though, I am resilient and I won't let these inflictions stop me from what I want to do and feel I need to do. At 12.30pm I sat at the front of the store at a lovely round table covered with a white cloth with gold stars on it and behind me was a shelf with my picture from the Canberra Times on the day of my launch and then some words about my book and then all my books, that made me feel very special indeed. I had many people come and speak to me and have their books signed, some people already had my book and they just wanted to meet me, I felt so honoured that these people came to either buy my book or see me. I met Susan from Brain Tumour Alliance Australia and she is an extraordinary person, I think all people whose lives have been touched by a Brain Tumour are. She would like me to speak at one of their meetings and this is something that I would love to do because brain tumours are now the greatest cause of childhood cancer mortality in the age group 0 to 14 years. Causes of brain tumours are unknown and they can not be screened for or detected early. If I can raise awareness about childhood Brain Tumours then perhaps more can be done to combat them in the future and this means that lives could be saved, it is a monumental task but one little voice could be the start of greater attention to Brain Tumours. Anyway back to the in-store signing, it was another remarkable day in my journey and one that I will remember for meeting the people who are reading my book and how it is making a difference to their lives. Kevin told me that I was the number one selling author in the Store for the day, outselling authors like Jodi Picoult. What a huge achievement I am so overwhelmed yet proud that as a twelve year old, my story about my journey with a cancerous Brain Tumour is selling so well and touching a diversity of people. They kept the books that were left after the signing and feel that they will be sold out very quickly and have said they would love to have me in store again. I was given the most exquisite bunch of flowers as a thank you, which they did not need to do, it was them that I thank for letting me be there to promote my book and Brain Tumour awareness.

While I was signing books Jarrett had his race and because he has ACT Schools Cross Country on Monday, his Coach told him to run it easy, well easy for Jarrett was coming first! He said the course was sloppy and slippery, his clothes had mud splattered all over the back of them, poor Mum having to wash them. He is my hero because he runs so well and years ago he was told he would not be very good at sport because he has oral, verbal and motor dyspraxia, well he has proved them wrong.

I still had my headache into the late afternoon and tried to relieve it with panadol and by lying down but lying down made me dizzy and nauseous so I sat quietly and rested my eyes. By dinner time my headache had disappeared and I was so relieved because I could then eat a little dinner, we were going to have lasagna but we turned on the oven and it started to blow out lots of smoke, Dad says the fan has burnt out, that would probably only happen to us, we seem to have so many dreadful things happen but we just shrug our shoulders and move on, so we had spaghetti bolognaise instead. Tomorrow we have to do some final cleaning and gardening at our old house.

'The most valuable things in life are not measured by how much money we have or what we own but by friendships, trust, faith and love'


Anonymous said...

I wish I had been there to give you a huge hug when you broke down and cried! Darling, you are still the same person...That kind, loving, considerate girl with the glowing smile a mile wide! I know that the pain must really get you down...but always remember...YOU ARE A STRONG GIRL...I believe in you...! And always remember, it is alright to releases all the pain and frustration that has been bottled up...Stay strong...I am writing some Poetry and Quotes for you that I will send to you very soon...I would really love to have a coffee with you one day soon...If you would like that I will give Mum a call and sort something out! Take care my beautiful little sister...My Little Soldier! Lots of Love Lysette and Andrew XoX

laura may said...

You are definitely still the same person. As is says in the bible, the spirit is willing, but the flesh is weak. You have an extremely strong spirit and that's what people care about, admire & remember in a person. It's wonderful you got through it sweetheart, and a cup of tea is the perfect calmer. I look forward to reading more from you soon.

Lauramay. xx

Dianne said...

Dear Dainere,

What a lovely picture of you at Borders, you put on a brave face and put aside how you were feeling to help others! We can all take a lesson from you Dainere.

What a busy time you all have had, packing, moving and reorganizing your home. Jarrett and Nalani did well at their Club awards, good on them.

Lachie was allowed to play soccer today. It was raining for the whole match, so cold and miserable. They beat Radford 2-1. Nick Vecchi scored a goal which was exciting for the team. Lachie's heel pain has diminished with rest, so we hope he is back running well on Monday.

Stay warm and see you soon

Lv Dianne xxxx

Anonymous said...

Dear Dainere
We wish we could take that pain away for you. You have had such a busy week. Your headaches may be caused by the stress of your pain and trying to cope with school tests and so on.

Lysette is right, it doesn't matter if you cry sometimes. It can be quite a good release of all the tensions.

Your book signing went so well. You put a lot of people to shame with the bravery you show when faced with the challenge of doing things while in so much pain.

Sunday is a day of rest so they used to say, so take the opportunity of having a restful day after such a busy and sometimes exciting week.

Poor Mum, she must wonder sometimes why so many things go wrong. Fans in stoves never give any warning though, they just give up the ghost suddenly.

Your new home sounds lovely, with the pretty garden and although it is smaller, Mum says you are able to get yourself around pretty well now, so you must be feeling a lot more independent.

Jarrett and Nalani really scooped the pool with their running. Well done to both of them.

We are so looking forward to seeing you soon.

Lots of love
Nan and Pop xxx ooo

Anonymous said...

Dear Dainere,

It makes me so sad to know that you are suffering so much pain. I know that all of us, who are with you in spirit on this journey, wish that we could each take a piece of that pain so that you didn't have to carry it alone. We are all so in awe of you that you continue to achieve so much despite the pain - and always with that trademark smile!

I am so sorry that I was unable to make it to see you yesterday when you were signing your books. I did manage to drop by there later and saw the fabulous display at Borders - what an honour to be "front of shop"! I am sure that all those books will be sold in no time. I loved the little stickers that they put on the books that you had signed - I am sure that will encourage more people to buy!

How wonderful to hear that Nalani and Jarrett have received recognition for their running achievements. It was interesting to read that Jarrett has had to fight some battles of his own. It seems to me that members of your family have great tenacity to overcome life's problems. I am sure that you will all have the strength, wisdom and faith to face the hurdles that might lie ahead.

I hope that you are feeling well and truly "at home" now in your new house and that you are able to move around more freely. I hope, too, that Tinkerbelle and Theodore have settled in well and found some cosy "snoozing" spots!

I hope that your day is a good one tomorrow,

Lots of love and warm hugs,

Anna xoxox

Anonymous said...

Hi Dainere
Im sorry you are having such a hard time. I hope you get a bit more pain relief this week. May be you just need to rest more and take it easy. Its great you have now moved into your new home - I hope it will bring you lots of lovely memories like your old home. It sounds like you had an extremely busy day on Saturday. Well done! Keep smiling :)
luv Sandra

m_monicascott said...


It was an honour to meet you at your book signing, you looked so pretty and your smile was beautiful, I would never have known the pain you were feeling.

It must be awful to have to have tests at school with such a headache. I guess you are not the same girl in a lot of ways but I think you are the same in your heart but a lot more resilient and you have wisdom and strength way beyond other girls your age.

Getting an excelling is really great - well done. Your new house sounds great!

Your mum must be an amazing woman and very patient.

Hope you enjoy your week. Looking out the window today, at least we have a bit of sun to enjoy

Take care xxxxx Monica