PLANET YOU INTERVIEW

31st July and 1st August 2010

The wind whistling at our backs is what greeted us at running training early yesterday morning, the kangaroos with their joey's in their pouches grazed languidly on tufts of grass. While Jarrett and the squad did their 1km repetitions, Mum, Dad, Nalani and I went for a walk, well I got pushed in my wheelchair, around the 3km loop of the course. I was so grateful that I was rugged up in many layers to keep warm because the wind was hostile as it came howling from the mountains.

I practised my interview questions until Cate and Ash from Planet You came over to do the interview. From the moment they walked in the door I got the feeling that they were extraordinary and friendly people and that put my nerves at ease a little. They brought me an exquisite Teddy Bear, he is one that you put in the microwave and heat and he gives you warmth and comfort for ages, he also has a lavender scent that helps you relax. I love him so much and I decided to call him Ash to remind me of who he came from. After chatting for a while, Cate set up the camera and microphone to do the interview. Both Ash and I were pretty nervous but once the interview started it went amazingly well. Ash asked me questions like what my condition was, how long I had known about it, how my condition affected my daily life, if the public was aware of my condition, about my book and how it came about and why I wrote it and how other young people can help raise awareness. I thought that the questions were some of the best that I have been asked in all my interviews and talking to Ash was almost like talking to Jarrett because they are the same age. Planet You is about empowering young people to make a difference in the world, I will let you know when it is going to be on. Following the interview we chatted some more and found out about their own amazing journey of being homeless for a while because of the Global Financial Crisis, because of their experience they now raise awareness and funds for the homeless. I gave Ash a gift of a special pen to thank him for taking the time to interview me and share my story. As I waved goodbye to them I was so pleased to have met these two incredible people who say they are just ordinary people, doing extraordinary things. Planet You website is www.planetyou.org.au.

With my nerves all gone, I spent the rest of the day enjoying myself with my family playing up words, play station and watching television. The last thing I was doing was knitting when I experienced a stinging pain in my left pointer finger that brought my knitting to a halt. Later in bed the pain spread all the way up my entire arm.

We're into a brand new month today, the last month of Winter, we went to running training at the AIS planning to go for a walk but the wind was as cold as ice so our plans had to change, so we sat in the car instead, just as well because it started to lightly snow- brrrrrrrr!

I had a warming cup of tea when we came home, then went to Brand Depot to find photo frames, while we were there I found two perfect solar lights for my Fairy Garden, I could not put them in my garden yet because all afternoon it has been pouring rain, we have even had some hail.

My hearing aid is making a difference for me and I hardly notice that it is there, the real test will be tomorrow when I go to school. I have put one of the special stickers on the hearing aid it is delicate black butterflies, I can change the stickers whenever I wish because they are reusable ones, how clever is that?

NALANI HAS TO HAVE SURGERY AND MY HEARING AID AT LAST

29th and 30th July 2010

Today was a splendiferous day, one that I had been waiting for - the day I was fitted with my totally trendy, fashionable and fabulous hot pink hearing aid. I had pain and felt unwell but nothing was going to spoil such a auspicious occasion, the day that I could hear not one hundred percent better but my world became so much clearer with the help of this marvellous invention.

I will share more about it later but first I have to go back one day and tell you the events of Thursday. Although not a cold morning, it was miserably wet and inclement, however if you look on the positive side, rain helps our dams and gives our Earth life. I tried to also look on the positive side as I woke again in severe and constant pain, I can live with it even though it is so draining and debilitating because I am grateful that I am alive. After playing a game of Happily Ever After with Nalani, we had to take her to see the Sports Orthopaedic Surgeon, to hear what the outcome of all her recent tests were. The doctor was located in the same place that I go to see my Paediatrician, he was so friendly and after examining Nalani and looking at all her scans he told us that her left knee cap is sitting in a sub laxed position, there is only one option for her and that is surgery. She has to have an arthroscope and a knee stabilisation, the stabilisation will be done either through repair or she may have to have a reconstruction, the doctor will not know until he goes in for a look. She has to have surgery on 17th September, it is normally just day surgery but he has booked her in overnight in case of complications. After the surgery she will have to wear a brace for six weeks, in the first three weeks she can only bend her knee up to 45 degrees then in the next three weeks she can build up to 90 degrees. It will then be another two to three months and she will be able to fully participate in any sport she would like. He said there is only a five per cent chance of recurrence of the injury and she will feel like a new person. This means that she will be running again next year which she is so excited about, before her surgery she has to see Rhiannon to help her build up before surgery and then she will recover much more quickly from the surgery. When she has the surgery Mum and I will be there for her, it will be so strange to be by a bedside rather than the one lying in the bed in hospital.

When we came home I felt so exhausted, my pain had increased and I also felt nauseous again, even though I was supposed to go to school for the afternoon I was not able to, I just did not have the energy or feel well enough to go. It was running training in the afternoon and we had to take Jarrett, so I did some knitting in the car and rested my weary body. I played my Tinkerbell DS Game and practised answers for my interview with Asho on the weekend. The tape on my right foot became so itchy I could not bear to have it on any longer, so we had to remove it, the time before I had tolerated it longer and it did help but my skin had other ideas this time obviously. This makes it difficult as taping has given me relief, it is a vicious circle really. I did my exercises that Rhiannon had shown me at physiotherapy the other day, I am determined and today I pushed through the discomfort but think I over did it, I guess I have to learn how to judge when to stop. Rhiannon will be kept busy seeing both Nalani and I , she is a very special person in my life because she is doing everything she can to help me.

Today was a day of celebration because of my hearing aid and even though I had the worst possible nights sleep with pain, cracking and my knee getting stuck and not been able to bend it, I just shrugged my shoulders and concentrated on this wonderful positive that was going to happen. A game of Upwords, some knitting and a lovely visit from our friend Manda helped the day slip by ever so rapidly and the time came to drive to a new horizon in my life, my hearing aid fitting.

My marvellous, extraordinary and miraculous hearing aid is a hot pink Siemens Explorer hearing aid, it is state of the art and quite a fashion statement. It has a computer chip in it and it was all set up with a special program on the computer. It fits so beautifully, it is like it was meant to be there, it is light weight and very comfortable but best of all, I can hear more clearly, I did not realise how severe my hearing loss had been until I was able to hear so much more clearly with it turned on. I will never have one hundred per cent hearing in that ear but who cares, at least I can appreciate conversation and the magnificent sounds around me and hey if I ever feel a little cheeky I can always turn it off to block out people I don't particularly want to listen to! The sound I get in my hearing aid is not quite like normal speech, it is slightly tinny but the audiologist said as long as it did not sound like I had my head in a bucket then that was terrific. I learnt how to change batteries in it, they last for approximately two weeks and when they are running low you hear a tune in your hearing aid and this tells you that the battery is running low, it will last for another half and hour before running out totally. I also learnt how to care for my hearing aid, by putting it in a special container with a drying capsule that helps take out moisture because that can damage the hearing aid, the capsule is put into the drying tub and then you place the hearing aid in there overnight. I was shown how to clean wax out of the ear piece with a specially designed tool, because wax can block the hearing aid and stop it from working properly, so it is extremely important to clean it regularly. I got a special little pack and it included stickers that I can actually put on the outside of the hearing aid, that is the part that sits snugly behind my ear, there are butterflies, fairies, love hearts, sea creatures and a special little creature called a hearing aid worm. I have to go for a follow up appointment on 2nd September to see how it is working, their main concern is that I still may have difficulty hearing in a noisy classroom situation and that an FM transmitter may have to used as well as my hearing aid so that I can hear. The volume is automatically adjusted so I don't have to do anything with that, what an amazing device it is though and one that I truly appreciate having and hope that it will help make my everyday life just that little bit easier. I again think that until you have gone through difficult journey's you really don't appreciate what life has to offer you in the way of miracles. Today getting my hearing aid has been a momentous event and as we left Australian Hearing I had a smile that stretched from ear to ear and sparkled like a gigantic diamond.

I am still smiling as I enjoy the new found wonder of clearer sound and not even the most terrible pain that is coming from my knee is going to put a cloud in what inside my heart has been a day of sunshine.

'When you listen to the sounds around you, enjoy and appreciate them for the gift of hearing should never be taken for granted'

A BUSY DAY AT SCHOOL AND PHYSIOTHERAPY

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'

SUNNY DAYS

25th and 26th July 2010

Today the suns beams of glorious light are cradling me in their lavish warmth and easing my pain ever so slightly, as well as raising my spirits to new heights. My heart fills with joy when the sun smiles down upon our Earth and it seems to give me energy to try to defeat what ails me so dreadfully.

My pain is present throughout my day even when the sun is bright and cheering, I had thought that warmer weather would ease it, but it has not, what it does help is how I feel and I think that in turn helps me to try to overcome my debilitating pain.

Saturday night at the Bella Vista Restaurant with Tass, Gloria, Steffany, Carla and Rosie was fantastic, the food there is scrumptious, mind you I only had chips but everyone else's looked like it had been prepared in the MasterChef kitchen. I followed my main course with a soothing, melt in your mouth lemon sorbet which truly tantalised my taste buds and made my mouth feel so fresh and cool. It was a terrific night with loads of laughter and although I could not always hear I really enjoyed it, however I became quite tired so it was time to head home and try to sleep.

I went to sleep quite quickly but woke constantly throughout the night with pain and twice with that horrific nightmare that has haunted my nights before, where I am behind a door, calling Mum, she is on the other side, she looks so sad and she can not hear me, I hate this dream because it seems of real and I woke crying.

It was running training at the AIS, the night had been rather mild and there was no frost on the ground for a change. We were actually able to go for a pleasurable walk around the perimeter of the AIS whilst Jarrett went for his hour run with the squad. There were some wispy, white clouds floating across the brilliant blue sky but there was no wind and I think that is what made the morning so wonderful.

After running training we came home, Nalani and Jarrett had a hoard of homework so they worked on that, I decided to work on my French Worksheet that the class will be doing this week, as I don't attend school on Wednesday this week. After a short period of time, I was fatigued and my eyes were flickering at a hundred miles an hour, then I could feel a distant pain in my head, the beginning of a headache, so I decided to stop before it became worse. I rested, this gives me some more energy for what I want to do next. My right arm was still painful to move and seemed almost paralysed but Jarrett offered during a break from homework to throw the ball to me, keenly I did this however I was constantly dropping it from pain and just an inability to catch it, I kept persevering but it was no good, I had to give up, but I gave one hundred per cent in trying.

We went to Magnet Mart in the afternoon to buy some potting mix and some plants for my fairy garden because Dad had made a brick edged garden bed around the bottom of my pot feature, it is only small but dainty, just how fairies would love it to be. I chose pansies again, a mix of colours, there was a special on a punnet of ten so we got those. We came home and I attempted to plant them whilst sitting on a blanket near the garden, it was quite difficult and I was not able to do it, so I gave Mum instructions on where I wanted them. The ten plants fitted just nicely in my garden. Then Dad glued the tiny fairies I bought the other week onto each pot. I would like to put a solar garden light on either side at the bottom to light my garden up at night and I am still looking for a couple of larger fairy ornaments to sit in the garden bed. When it is completed I am going to take a photograph of it. Towards night time we had a light shower of rain, which was perfect for watering my new plants and now with the sunshine I am sure they are going to thrive and bloom beautifully, my hope is that they will look like a cascading rainbow of colour as they grow.

Before dinner we had a game of Upwords and then after dinner it was time to watch the MasterChef Grand Final. It was extremely exciting and after the first round I was pleased that Adam was in front, then in the second round when they had to cook with the same ingredient three different ways, I was really impressed with both Adam and Callum's dishes. The last round, when I found out it was a dessert I was sure that Callum would come from behind to win but Adam hung on and cooked magnificently and he became Australia's 2010 MasterChef. I thought it was so wonderful of George to then announce that he wanted Callum to work in his restaurants in Melbourne and they were also giving him $10,000 to help with his expenses. What an amazing opportunity for someone so young, he really deserved something.

I slept on and off again last night with pain in my right knee being the villain this time, with no school today though it meant that I could stay and rest in bed a little longer than if I had of had to rush to school. With my pain and other issues it would be so much easier to be able to work my day on my own timetable but that is not possible, unfortunately. I tried my upper body exercises this morning because I thought my should had improved a little but I was so wrong, once I began I had to stop as it clicked and the pain shot up my arm so quickly I actually got a fright. It has been painful for the rest of the day, it almost feels like it is sitting out of place, I can hardly wait until physiotherapy now on Wednesday maybe it just needs some manipulating.

Dad had the day off today because he had to work the Queanbeyan race meeting the other Sunday. We went grocery shopping, you see, Mum and I can't do it by ourselves with me in a wheelchair the only time we can is during school holidays when either Jarrett or Nalani comes with us, so normally Dad will do it at night. It was terrific to go again as then I could choose the type of food that I thought I would like to eat. After grocery shopping which incidentally made me extremely tired for some reason, Mum unpacked while I rested then we played Upwords.

I feel like I have a slight cold at the moment and that is making me feel rather nauseous with my nose draining back on some occasions. Demazin seems to give me some relief, I hope that it does not turn into something more nasty.

Tomorrow is school, I am hoping that the sun continues to shine and brighten every one's days. My life is not how I would like it to be, but how fortunate am I to have been given this journey to inspire, help and meet the most extraordinary people, what a gift that is for me.

SCHOOL AND JARRETT'S RACE

23rd and 24th July 2010

Before I start on the last two days there is a story I have to share with you that I forgot to write on my last entry on my Blog. It is one about Tinkerbelle, I was having my shower and Mum was washing my hair - well what little I have but I still love to have it washed, Mum opened the cupboard to get out my special Barbie Shampoo and Tinkerbelle decided to pop her head in for a look also then when Mum had my head all soaped up Tinkerbelle stepped into my shower and ventured all the way in sitting under the chair I sit on to have my shower. Mum tried to get her out but she did not want to, eventually a wet and soapy Tinkerbelle had had enough and came out. When I had finished being dried, I had to dry Tinkerbelle off. It made us laugh and Tinkerbelle seemed to really enjoy herself.

Cold, frosty nights that freeze over the bird bath and make the driveway slippery lead to glorious, sunny days and that is what Friday brought us. Unfortunately my night had again been a disturbed one, waking to go to school is so difficult but it is something that I have to do. With pain in my right knee, hip, ankle and foot I reluctantly got dressed for school. My right arm had continued to crack and clunk leaving me feeling as though it was totally out of place, I could not lift it or bend it without massive shots of excruciating pain shooting up my arm and into my neck, so it virtually hung there as if paralysed.

On the way to school I had tears in my eyes because I was in pain but I have to try to have some routine in my life. At school we had Integrated Studies first and we learnt about soil types and food webs. While I was listening to the lesson, Mum took all the notes from the last three lessons that I had not being there for so that I could revise them with her over the weekend and on the days I am not at school. Sitting in class I felt really vague, as if I was not there, I think it was from the pain or perhaps it is from the tiredness from my lack of sleep. Next we had Science and we are learning about the different types of Energy. Our teacher brought in some toys and we were able to play with them and write down what types of Energy we thought they had. Every toy had potential energy as well as chemical energy because chemical energy is what we provide to make the toy work. It became a little noisy in the classroom with all the excitement of the toys and this is when I find that I totally lose my hearing and everything is a dull roar in the distance, someone asked me a question and if Mum had not have gently touched me and told me I would not have known. Thank goodness it is only one week until I am fitted with my wonderful pink hearing aid. Although I have been told this won't give me 100% hearing but it will have to be an improvement on what I am experiencing at the moment.

It was then recess time and time for me to leave, I have to say that I was so relieved because it had been a challenge for me to be at school that day. I find the days when I don't go to school I am able to rest when I need to and when I feel up to it I can work at my own pace and achieve so much more. I gratefully had a warm cup of tea, by the way I love Lipton Tea it seems to settle my stomach some days, after my cup of tea I had a rest and then we played Upwords. My pain continued to bother me immensely and I felt so drained but when I lay down to try to have a sleep I became very dizzy, the room spun around and I felt like I was on a very fast carnival ride and I just wanted it to stop.

Jarrett had physiotherapy in the afternoon to make sure his muscles were all loosened for his race on Saturday. I have physiotherapy next Wednesday and I can hardly wait, I have had trouble doing my upper body exercises because of my shoulder pain and of course even though I have attempted to I have not been able to do much in the way of my leg exercises due to pain and weakness. At night I watched some television and went to bed to try to sleep, however it was the usual with pain, clicking and sticking so my sleep pattern is roughly an hours sleep, waking, an hours sleep and then waking, some nights are worse than that.

Today that thick, white, icy frost covered the ground once more as the temperatures slipped below zero, however the sun had awoken and its warm rays touched the earth slowly defrosting the ice covered ground and heating the arctic air. I had a little more movement in my right arm than yesterday which I was grateful for, but with one positive there seems to be a few negatives. namely my right foot, knee and ankle which throbbed more ferociously than ever. My knee was so swollen, as was my ankle and my foot was swollen and shiny.

We played some Upwords and got ready to head off to the Lake for Jarrett's Cross Country Race. At least the sun was shinning and the wind was only very mild so it was actually quite pleasant as long as you were wearing a jumper and a coat. The water looked so peaceful, it was almost crystal clear and had a mesmerising reflection on it. Two black swans gracefully floated along the surface, occasionally stopping to look around or eat an insect. I wished I could lift myself out of my wheelchair and run towards that water, I think that I would feel free, just like those two swans looked.

Jarrett was called to the starting line and I crossed my fingers that he would have a terrific race, it was his first race back after his quadriceps injury that he got at ACT Schools Cross Country. The gun went off and my ears rung for ages afterwards, Jarrett and Alex an older boy from his squad took off like bolts of lightning to lead the race into the first turn after that we could not see any of the race and had to anxiously wait until towards the end to spot them again. The distance was 5km and last year Jarrett ran the race in 16:32:00 which was a great time. Finally we spotted the front runners coming into sight, Jarrett was one of them, he came flying home to come third, however the other two runners were senior runners, so he actually was the first junior male across the line and in the magnificent time of 15:58:00, a huge personal best from last year. His Coach told him afterwards that he was the youngest member of his squad ever to break 16:00:00 in a 5km race and how proud he was of him. He did a warm down and then to help his muscles recover he and another boy in the squad Sam went into the Lake up to their knees for ten minutes, I don't think I could cope with that, I am sure the water was icy cold! There was a presentation and Jarrett won a gift voucher from the Runners Shop which was terrific.

Watching Jarrett run so wonderfully, really inspires me to be able to run again one day, I will never be as fast as he is but I will be as determined and courageous and hopefully I will be able to achieve many personal bests.

When we came home I felt quite exhausted, probably from all the excitement of the Race, so I sat on the lounge and watched a movie. We are going to dinner tonight with Tass and Gloria I am looking forward to it but hope that I am not too tired and sore.

It is now only six days until I am fitted with my hearing aid and I am hoping that it will make a huge difference for me and even help me not feel so exhausted at school because being tired is making it difficult for me to concentrate, straining to hear makes me tire out very easily.

'A special wish I wish for you is to look in the mirror and smile at what you see, that person smiling back at you is the most extraordinary person there is'

NALANI'S RESULTS

21st and 22nd July 2010

Whilst the sun is shinning it brightens my days even when I have suffered miserably with pain that just sweeps through my entire being. Wednesday the sun shone brilliantly and brightly in the crystal clear blue sky it really was as pretty as a picture. Even though I had regrettably experienced another dreadful night sleep and I felt as flat as a pancake I knew I had school again, I just had to pull myself together, hold my head high and march onwards. After having the roll marked it was time to head off to our first elective, which for me was French. A strange memory came back to me, that was that on the day I had gone to see my paediatrician way back on 24th March 2009, I had been in my French elective, little did I know that day that my life would be changed forever. In French we were told what we would be learning throughout the Semester. This Term we are focusing on words related to French Cuisine, because later in the Term as part of our assessment we are going to pretend that our classroom is a French Restaurant and each of us will take turns at being a customer, waiter or waitress and a Chef. We have to speak in French dialogue whilst we are pretending. It is very exciting but it is a little difficult for me to remember words, my short term memory has been affected by my tumour, so I have set a goal for myself and that is to practise some French Cuisine words everyday and hopefully that will help, I should be able to remember at least a couple that way. French is also a little difficult as you say things in a different way for different genders. After French, I had Textiles, once again we were told what we would be doing over the Semester, to start off the teacher had made up calico bags and we had to write our name and do a design on the front with special pencils called ink pencils. Mum helped me write my name in fancy writing and then I used a paint brush with water and put it on the tip of an ink pencil and then I could brush on my design. I did a pansy because that is the type of flowers I have put into my pot feature in my fairy garden. I used red and a blue and it looked real, I was so proud of it. I did not get to finish it because we had to leave to take Nalani to the Sport Physician to hear her results from her MRI.

Parking was a nightmare but finally Mum found a spot along the side of the road, we waited and waited the doctor was running half and hour late and then finally Nalani was called in. We saw on the computer screen images from her MRI and the doctor told Mum that the news was not good. Poor Mum and Nalani, they both looked so worried when she said that, unfortunately it was not a torn meniscus or patellar tendonopathy instead the MRI showed that she has a lateral patellar tilt with a full thickness fissuring of the articular cartilage with some subchondral oedema present. Basically what it means is that her knee cap is not sitting where it should and it has caused major unrepairable damage to the cartilage underneath the knee cap. Nalani was told that she had to have a CT Scan to see where the knee cap sits in different positions and also was referred to a surgeon who the Sport Physician is unsure whether he will be able to do anything to help her. Another effect of her diagnosis is that she is likely to suffer from severe arthritis as a very young age.

We have just had so many terrible things happen in our lives, I think that sometimes it is unfair and then I remember that there are people out there that are far worse off than we are and I should not be complaining. Call me superstitious but I am still of the belief that one of us did break a mirror and we are sure getting that seven years of bad luck.

When we came home from Nalani's appointment I felt absolutely drained, school, driving to Deakin and back as well as Nalani's results had made me fell so terribly ill, I was dry retching and felt so dizzy it frightened me. I rested with a bucket by my side and a bottle of water which I sipped on and eventually later in the afternoon I felt a little better.

I did my Mathletics homework and answered some emails and at night I watched MasterChef which is so close to the Grand Final. I am so glad that Adam is still in, I really think that he is a good example of someone who really wants to cook. I was so impressed when he was asked why he wanted to win and he said it was not for himself but for his family and the memories he has of his family when he cooks.

My hip, shoulder and knee were all clicking in bed at night and I had difficultly turning. Of course I had my pain that continues to rule my life at the present time and I feel so helpless because of it.

I did not have school today, so I was able to lie in bed a little longer, I was not sleeping but I could rest my weary, pain riddled body rather than rushing around and having to go out in the crisp, cold morning air.

Once I was up and about I worked on a title page for my French book and trimmed and cut some worksheets from yesterday, carefully sticking them in. We have a French Dictionary for Beginners at home and I decided to start on my goal and read through some of the words in it. I really love the dictionary because it has pictures in it as well as the English word alongside the French word. I think the visuals will assist me to remember the words more accurately and successfully.

Just doing this made me fatigued, but the sun was shinning through the family room door and it warmed my body and heart. How wonderful to be able to see the sunlight and be warmed by its gentle rays, to experience this, I feel so fortunate.

I played Upwords with Mum and then made some yo yo biscuits, I wanted to cheer Nalani up after her results yesterday. We had to take Nalani to her appointment to have her CT Scan, it is so funny in a way, she had never had many tests before and I have had so many, now in just a short amount of time she has had an MRI and CT Scan, now we have something in common to talk about! She will get the results from the CT Scan tomorrow and then next Thursday she has the appointment with the Surgeon, then we will know what can be done for her.

We rushed home from the CT Scan to pick Jarrett up to go to running training, again I began to feel ill, I think I just can't cope with racing around to so many places all in a row. Jarrett ran extremely well at training and is all ready for his 5km point score race on Saturday, the best news is that the weather is going to be absolutely perfect, sunny and fourteen degrees, that is so much better when you are a spectator.

Tass brought over the canvases for me to paint for the new Ronald McDonald House that is being built in Canberra. So this will keep me very busy over the next few months, I really want it to be extraordinarily special.

There is a fun run and walk 5km or 10km on 6th November it is called Train for the Brain and it has two primary goals; one is to raise awareness in the Community about brain tumours and the second is to raise funds for Cure for Life Foundation. There is a website that you can look at to find out more information and that is www.trainforthebrain.yolasite.com . I think I have mentioned this run before, when I went to the Brain Tumour Alliance Meeting I heard about it and Sarah, the inspirational lady I met said she would like to push me in it. I hope that many people will come on the day to support it. Although it is not the charity I am raising funds for, mine is the Sydney Children's Hospital Foundation Brain Tumour Fund, I support it fully as they are trying to raise awareness like I am.

'The most magical moments in our lives come from reaching out our hearts and hands to one another'

BACK TO SCHOOL

19th and 20th July 2010

Tears trickled like a stream during heavy rains on Sunday night as I suffered with tremendous pain, I rated it a nine out of ten, it was in my shoulders and travelled up into my neck and the back of my head. I would sleep for approximately half an hour after a massage and heat then wake again. I just wanted to sleep well ready for school on Monday and I was becoming more distressed and anxious each time I woke. The morning came and how I felt is really indescribable, perhaps I could say I felt like I had been on a gruelling adventure that left me battered from head to toe.

Life goes on though and I had to go to school, so I raised by weary body and with Mum's help I somehow was ready on time. The weather looked like how I felt, it was disastrous, so bleak, overcast and inclement. Many excited voices filled the classroom as the teacher marked the roll and we headed off to Chapel. Chapel is a time for reflection and I thought this would give me a chance to compose myself and try to overcome my intense pain and tiredness. We heard about the story of Noah's Ark and how he had faith and trust in what God asked him to do. Then we were told that we should be proud to have faith and to never feel ashamed or embarrassed to talk about our faith to others. I know that I have done this frequently in my Blog, like Noah I have been given a journey to fulfill, I don't know when I will fulfill it but God is there beside me all the way even though I do sometimes question where he is taking me.

After Chapel it was time for PE, although we were not starting athletics this week, I was still included in what the rest of the class was doing, they were finishing a unit on Volleyball and even though I could not play volleyball I had the opportunity to pass the ball to Ally in my class who is sporting an injury and is unable to participate also. Our arms became heavy and tired after we had thrown to each other for about fifteen minutes. I think that was my upper arm exercises for the day, I also found that my right hand had swollen and was rather painful but I had enjoyed the experience.

The last lesson for the morning was Insight and we worked on a code breaker using mobile phone numbers and letters. This was quite easy for me to do, as I had been able to do lots of puzzles when I was in hospital last year. I was glad when it was recess because I was still feeling completely exhausted and just wanted to go home for a warm drink and a rest.

As we walked home, it began to rain only adding to the misery of the day. Once home I was comforted with a lovely warm cup of tea, a hot water bottle and the security of being indoors. I wanted to play Upwords, then had a rest before it was time to return to school after lunch for Double English. This Term we are looking at Science Fiction and we had the choice of two books to read; The Giver or The Lake at the End of the World. I chose The Giver because we had found that at Salvation Army during the holidays and I thought it was easier to follow, as The Lake at the End of the World is written with two people's opinions in it and that could become very confusing for me to comprehend. After choosing our books we had to read for twenty minutes, after fifteen minutes I found my eyes felt heavy, began to flicker and the writing in front of me became a blur or words all running together and all I wanted to do was lay my head on the table and go to sleep. Doing the morning then the afternoon at school was such a challenge for me, when I came home I burst into tears, my whole body ached, I felt ill, my head was viciously thumping and I just wanted to curl up and go to sleep. I had a wonderful warm shower hoping it would pacify my woes but I just sat in there, I have a shower sitting on a shower chair as I am unable to stand and I continued to cry. When Mum got me out and dried me, I slumped on the bed, exhausted and I slept for half an hour. When I woke I was still drained and in pain but at least I was paralysed as I had felt earlier.

I set myself a goal at the beginning of the school year to be able to attend school full time by the end of the year, after yesterday I am doubting whether this is gong to be possible, but I know I have to continue to be determined.

A few hours sleep again last night, this time every time I moved my shoulders clicked and I was in pain, my knee became stuck and I had some breathing difficulties again. What is it like to sleep well? I wish there was some way that I could sleep a full night without waking, I think that would feel like heaven.

I stayed in bed this morning drifting in and out of sleep, as today was not a day that I go to school and thank goodness as it gives me a chance to recover ready for tomorrow when I do have school again. I think your body guides you as to what you can and can't do and yesterday mine was telling me I had done too much.

My morning was spent working on a title page for my Integrated Studies Scrap Book that we have this Term. The sun was shinning brilliantly, such a different day compared to yesterday and in the late morning Mum and I went for a walk, to enjoy the fresh air and sunshine and also to pay our rent, it was a short outing but I did enjoy the lovely Winter day that we were blessed to have today.

We played Upwords and then Mum read some of the book The Giver to me, it is so much easier for me to concentrate when she read to me rather than my flickering eyes trying to follow the words and comprehend what is happening in the story. I have decided to have a Mummy special and rest before we have to take Jarrett to running training this afternoon.

Tomorrow is a busy day, I have school until recess and have the opportunity to enjoy my new electives; Textiles and French and then we have to collect Nalani and take off to Deakin, she has been fortunate enough to get an appointment tomorrow at 11.30am with the Sports Physician, who will be able to inform her what is going on with her knee. She is so elated as now she does not have to wait until 10th August when her appointment originally was.

Thank you again to the many people who leave the most beautiful and encouraging comments, advice, their stories and quotes on my Blog, please know that I treasure each and every one.

'When I have my lowest lows, I know that your love will be there to keep me warm and remind me of the sunshine within'