Friday, July 30, 2010


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'

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'

Monday, July 26, 2010


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.

Saturday, July 24, 2010


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'

Thursday, July 22, 2010


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 . 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'

Tuesday, July 20, 2010


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'

Sunday, July 18, 2010


16th, 17th and 18th July 2010

They say that all good things come to an end, well that is the case today as it is the last day of the school holidays and then it is back to the routine of school and homework.

As the sun is disappearing for the day and some ominous clouds are starting to roll across the skies as rain is predicted for tomorrow, I have to admit I am feeling a little anxious about returning to school. I had being hoping to start a brand new term with my hearing aid but of course that was not to be, it is only twelve days until I do get that marvellous, lovely pink hearing aid unfortunately though I will have to become used to it at school rather than the original plan of using the holidays as a time to familiarise myself with it and have any adjustments made. Also often at school I just don't feel that I am coping and I feel so different to everyone else in the class who talk about sports and parties. I accept this journey I have been dealt but I do also regret it sometimes and long for my old life back. There I go again feeling sorry for myself, I hate being like that because I am not that person, I am a giving, unselfish and loving person who is determined to change the lives of other people for the better.

Friday for me was ordinary, I had yet again not slept well at all with pain but as I have said many times this is normal for me. I played Upwords in the morning, I guess by now you can see it is my favourite game then we had to go to our local shopping centre to pay some bills and buy some food. The weather was pleasant as the sun was shinning but the Winter winds here always have that arctic chill to them and that spoils the sunshine and blue skies. I rested in the afternoon as we were going to the Brain Tumour Alliance meeting that evening, which I was a little apprehensive about as well as being excited. I was so glad that we went though because I met some of the most inspiring people, they weren't children, they were adults but they had each travelled their journey's just as I have. Matt who is the Chair of Brain Tumour Alliance Australia is so passionate as a patient advocate, he has a wish list and that is that a cure for all brain tumours is found; that when people are diagnosed they receive a comprehensive information package with information on the type of tumour, cognitive and emotional changes to expect, treatment options and support information; his third wish is for a widespread understanding by the wider community of the disease and the difficulties faced by the patient and caregivers. I was totally in awe and inspired however by Sarah, she is a young Mum, she was diagnosed in 2007 with an incurable and aggressive brain tumour, she is a determined and courageous person and hearing her story about walking the Kokoda Trail in 2008 was incredible. She too, like me has a saying that keeps her going and it is, "You can weather the storm by dancing in the rain". There is going to be a fun run/walk on 6th November this year to raise funds for Brain Tumour Research and Sarah and I are going to be there together doing it, she even said that she would love to push me. Mum said that would be marvellous, two inspiring, determined people together raising awareness and funds. At the meeting they also spoke about my book, Mum told them about it and I then said a little also they think that my book is making a difference already and hope that as it reaches further it will continue to help people understand the journey of a paediatric brain tumour patient. I came home from the meeting feeling full of hope and felt like a light had been turned on from inside me.

My bright light from within started to fade though through the night when I was inflicted with not only pain all along my right side but into my should blades which clicked every time I moved and my chest was so tight I had trouble with my breathing. I was scared, I did not know what was happening, Mum however was there, she comforted me and gave me some Ventolin which eased the chest pains for a while until they returned and were eased again by the Ventolin. By morning I still had pain down my side and in my shoulder blades but my chest pain had diminished. It was an extremely cold night so Mum thinks that as I have suffered from Asthma in the cold weather before that is what my pains and breathing problems were because the Ventolin eased them. I remembered then that my chemotherapy treatment is known to cause a decrease in lung function and this could be another explanation.

I was so terribly tired on Saturday that I woke and then fell asleep again so Dad took Jarrett out to Stromlo for running training, also it was only one degree when they were there training so it is fortunate I did not go as it may have triggered my asthma again. When I woke again I felt uncomfortable, I can't explain why, I just did not feel well. I had some nausea and could not even stomach my usual cup of tea, however as the day progressed I felt a little better. Lack of sleep can make you feel unwell and this is probably the reason. The sun was shinning again and when you were inside the house, you would have thought it was almost Spring but if you ventured outside you were cruelly reminded it was still quite a while off. We went to Federation Square to meet Tass, my number one salesman and his lovely wife Gloria. I had a hot chocolate which actually went down really well and we chatted about our week. Tass always makes me laugh, he must be the most jovial person I have ever met. He has the canvases for me to do the painting to be auctioned next year. I am going to sit down and plan very carefully how I would like it to look, this is extremely important to me and I want it to look spectacular. As we chatted time slipped away and us and another table were the only remaining patrons and one of the staff members came over and told us they were closing, it was actually quite hilarious, I have never been somewhere and asked to leave as they were closing before! Our night was quieter we came home and watched Daddy Day Camp on television, it was a light comedy. I had a headache when I went to bed and found I could only lie on my left side as if I lay on my right side my headache throbbed more fiercely.

Some time in the night my headache disappeared but again my sleep was disrupted by my knee sticking and pain, I had to wake early as we had to take Jarrett to the AIS for running training as Dad had to work as Queanbeyan Race Course could not race on their track and they had transferred their meeting to Canberra. We had been going to have a special family day together for the last day of the holidays and perhaps go to the movies if I felt up to it but it was not meant to happen obviously. Anyway, we went to the AIS and again it was one degrees when we arrived. Jarrett's coach had told him that today he was doing a one hour run in preparation for Nationals in five weeks time. We sat in the car until it warmed up and then went for a short walk around the AIS perimeter. Nalani finds that the cold affects her knee also and as she can't run yet she likes to go for a walk when she can to try to help it. Even though her results are back with the Sports Physicians she will not be able to get them until 10th August unless an earlier appointment becomes available. She is so frustrated and a little worried as she has Human Movement and PE as subjects she is majoring in and wants her knee sorted out sooner rather than later as she excels in these subjects and does not want to have to receive status which would not be the sort of mark she is capable of. After Jarrett's run we came home and played Upwords, yes again. We had to get a couple of back to school items and when we were out I found four little fairy ornaments to sit on my pot feature, I am very excited about this, I think fairies spread happiness and magic and I am hoping that my fairy garden will be magical and bring me some good luck. My bag is all ready for school tomorrow, I have Chapel, PE and insight in the morning and then I will return after lunch for double English. I am hoping that tonight I will have a better night sleep as school takes so much out of me and if I am already exhausted I have trouble coping.

'I think that the greater the obstacle in our life is, we have more glory when we are able to overcome it'

Thursday, July 15, 2010


14th and 15th July 2010

Winter seems so unfriendly, glacial and desolate but after Winter we have the promise of Spring with blossoms and new beginnings. My heart feels heavy with the dullness of the weather and yesterday it was abhorrent with icy, gusty winds that chilled you to the core, rain and sleet falling from the grim, grey skies and angry clouds that were whisked rapidly across the sky.

I had been awake most of the night with pain and nightmares, I was so depleted of energy I could hardly raise my arms to do my upper body exercises, yet with determination I found an inner spirit to get on with my day. The taping had helped the pain in my right foot a little but the tape had begun to irritate my skin, I left it on for as long as I could endure it but reluctantly I had to remove it and was left with a lovely red, raised rash. I have been trying to walk a little each day it is so difficult, painful and I have been toppling over again but even though I have tears coming from my eyes, I am trying to soldier on.

Nalani had her MRI, she will not have any results for another two days, then hopefully it can all be sorted out for her and she will be able to move forward and ahead in her life.

We played Upwords and cooked some delicious Chocolate Chip Muffins, I must say though Jarrett needs to practise on his egg cracking technique! We then had a visit from Father Mark who said Mass, blessed me with healing oils and we had communion. He then had a cup of tea and a chat with us. He thinks that I must be a lucky charm for the Wests Tigers as they have played in some really close games lately and come out victorious. After he left I found I was feeling extremely tired so I rested, this seems to be a pattern, if we have visitors or do a large variety of things I become so tired and if I don't rest I begin to feel really ill.

In the afternoon I found my throat felt like I had swallowed razor blades, it was sore and then I got a headache that made my eyes water and my head feel like it was a balloon being filled with air and blown up. Mum gave me some medicine which relieved it for a while but I went to bed last night with stomach pains, a headache and my throat still very sore. I again woke several times, I could not turn myself, I had pain and again I had nightmares. I could hear the forceful winds and the rain pelting down outside and thought that today would be another abominable day.

However as the sun rose in the sky, a beautiful day was revealed although looks can be deceiving because although it looked marvellous, the air was harsh. Sun shinning though makes me shine from within and even though I am still unwell today and in more pain than yesterday I actually have a new area of pain and that is in between my shoulder blades and up into my neck, it is extremely uncomfortable, but the sun does make me feel so much more joyful.

We again played Upwords, then memory game, throwing a soft ball into different size containers, which I did with my left hand as my right hand is just not able to hold anything today and surprisingly I did really well, next was a game of black jack and then Disney Think Fast. If you fill a day with fun activities it takes your mind off all your troubles.

It is nearly the end of the school holidays, the time has gone so quickly, I am a little nervous about going back to school but probably lots of other people are too. Because it is a new Semester I will be doing French and Textiles for my electives I think they will both be challenging for me, but these will be just little bumps to get over.

Again I would like to thank all the people who have been leaving such extraordinary comments on my Blog, I truly appreciate them and thank you from my heart.

Tuesday, July 13, 2010


12th and 13th July 2010

As I sit to type this entry the rain is tumbling down out of the sombre grey skies, tears from the angels who look down upon us. It is such a contrast to the weather we experienced yesterday which although began with bleak, foggy skies, eventually cleared to a crystal blue, cheerful sunny sky.

My nights have remained constantly disturbed by this debilitating pain that I have been experiencing, I am so exhausted and it is taking its toll on me and Mum, she looks dreadful; dark circles under her eyes and just looking really tired also. However life goes on and like I always say I am lucky to wake each day and be able to face it the best way I can and that is usually with a smile on my face even though deep inside I do feel a little down.

I played Upwords with Nalani and Jarrett before we went grocery shopping, this week Nalani came while Jarrett went for a long run. I enjoy grocery shopping, it is like an adventure to me and I like to look for specials that Mum can buy as well as some new and interesting food we might like to try. The lady at the checkout was extremely friendly and was chatting to me, I felt really embarrassed though because I could not always hear what she had said, I hope she did not think I was rude as I tended to nod my head when I could not understand and I thought it was a bit annoying for her if I kept saying "pardon" all the time.

The rest of the day until the afternoon was spent answering some letters, emails and watching one of my Barbie DVD's. They always have a lovely moral to them and are light and easy to watch. They often teach you that it is important to always be yourself and follow your dreams, I really believe this is something every one can learn by. If we try to be like every one else then what a boring world we would live in and every one is an individual with a variety of extraordinary gifts and talents and it is important to use those to make the most of our lives and enhance the lives of the people around us.

It was then time for my appointment with my Paediatrician, I felt so fatigued and barely had the energy to sit. At the appointment we went over all that had occurred when I was in Sydney in June and what has been happening to me lately. Firstly, he felt that I have actually gone backwards and that is not my fault, it is due to all the side effects that are starting to take hold of my body. I could not stand very well and toppled, then he had to help me take any steps, I could not put any pressure on my right foot and I was so unsteady and in considerable pain as I attempted what he requested. I was measured and my height compared to the last time I saw him has decreased which is what happened in Sydney also, my weight has also dropped again, perhaps it is due to the pain that I am experiencing and it is draining me. He described what is happening to me as like my body going into hibernation, as even my pulse rate has slowed. He was writing my letter for my hearing aid, so that I will be able to have it fitted on 30th July, he thinks this is extremely important, especially with school going back next week, how am I supposed to sit in a classroom and learn when I can not hear at all, have trouble hearing correctly and have to concentrate so intensely that it tires me so quickly. He restated that my tumour has grown but is stable at this present stage however it could become aggressive next week, next month, three years or even five years down the track. There are two new areas of enhancement on the brain that are unexplained at this present time and the enhancement on my spine has remained stable. It is so difficult to try to live a normal life when you don't know what could happen. Yet I do see each and every day as precious and treasure every moment I have. He thinks that every child that has to go through a chronic illness should have to see a child psychologist so that they can discuss feelings. I always try to be positive, courageous and strong, he said that is great, but sometimes I am allowed to feel angry, negative and upset. He wanted Rhiannon to have a look at my foot when I saw her today to see if there was anything she could do to assist with it. We spent an hour with him and he will see me again on 22nd September but is always available to talk to in between appointments. He is a little disappointed about the lack of information that he is receiving from Sydney, I guess this is what happens when we don't have a paediatrics hospital here in Canberra, that is really sad, considering we are the Nations Capital.

I watched MasterChef on television and was surprised to see Jonathon go, he had avoided the bullet so many times but this time he just couldn't. When I went to bed I was still in pain but I snuggled into my warm bed seeking some comfort and sleep. However another sleepless night again has left me feeling rather like a zombie at the present time.

Today as I have said is a horrible day in Canberra and the sun has not even made the slightest appearance in our skies. My morning was spent playing Upwords and a card game called Happily Ever After. It was then time to go to my physiotherapy appointment, I always eagerly anticipate these as I find I do get some relief even though it is limited it does help for a few days. Rhiannon had a look at my right foot and agreed that the swelling and pain was caused by an injury, most likely when I was attempting to walk and collapsed. It seems the ligaments around the cuboid bone, now that bone comes off your metatarsal bones and it is the slightly lumpy, well it is actually a cube shape bone on the side of your foot, have pulled tight and have made the bone lift. She did some work on it and then taped it to take some of the load off it, hopefully it will provide some assistance for the next few days. She also worked on my knees and hamstrings, when these are released I find it helps me. Although my knee, hip and ankle are still extremely painful. She thinks a walking frame may provide some assistance to help me with my walking and is going to look into it for me. We do not have an occupational therapy contact here in Canberra anymore because our assigned person went on indefinite leave and no replacement has been found to take over her cases. I have to set myself little goals each day, when I have a bad day I can't be too disappointed and when I have a good day I need to make the most of it. I have another physiotherapy appointment in two weeks. I also have to continue working on my upper body exercises as well.

In the mail yesterday we received my next appointment letter for my MRI, that is on 7th September. So it looks like I will have all my appointments during the second week in September. I hope that this time the appointments are not made too close together as missing out on appointments is not only disappointing, it often means that I have to wait another three months to have some of my issues taken care of.

I also received a wonderful letter and that was from the paralympic committee and I have been given a provisional classification as a disabled athlete. I have a T/F 36 classification and it means when I compete at my school sports carnival it is in my own class, not against everyone else. This then means that I may be able to qualify to represent the school at a zone level also. This has given me encouragement to work devotedly on my upper body exercises so that I can prove that when you have a brain tumour you can do things that you used to be able to, just a little differently. Some people in Sydney have thought I should give up on my dream of doing athletics again but I did not want to, I feel I have already had to sacrifice so much since my diagnosis and this is one thing that is not going to be ruined by my tumour, surgery or treatment.

We are off to running training this afternoon for Jarrett who has fortunately made a full recovery after his injury. I am going to rug up and sit in the car to watch, there is no way I want to try to brave the miserable weather.

Tomorrow is Nalani's MRI, I really hope that it is nothing too serious and that she will be able to be back doing what she loves, I know how it feels to be deprived of those little activities in life that really do mean so much.

'There are times when life isn't all you want but if you have your wishes and dreams you can be driven forward over the biggest bumps and the deepest potholes'

Sunday, July 11, 2010


10th and 11th July

We are certainly in the middle of a miserable winter here in Canberra, we have only seen a hint of sunlight over the past forty eight hours, it has definitely been indoor weather.

Jarrett is fully recovered from his injury and yesterday morning we were off to the AIS for hill training. I had been hoping to go for a walk but it was just too freezing to even attempt to leave the car, even with all my winter woollies on.

The rest of our day was a quiet one spent at home playing Upwords, drawing pictures with Nalani and Jarrett, playing Buzz Pop Quiz which by the way I won - just and making some extraordinarily delicious pancakes with Mum and Nalani. Family days spent together are wonderful and when laughter fills the air it makes you realise how lucky we are to have each other. Because it was so cold outside, Dad planted my pansies in the pots for me and it looks like a cascading rainbow, I can now hardly wait for the rest of my garden to transpire.

I have not been without pain this weekend it has continued to rip through my body like a hurricane through a town. My whole right side feels so weakened by it and it is now starting to affect the lower half of my left hand side. I am still unable to stand without falling and attempting to walk has become virtually impossible. I think there is a saying that says you have to learn to stand on your own two feet before you can walk, well this applies to me at the present time. I have also had some more headaches which are causing dizziness and require me to lie down to experience some relief and again I have been unfortunate enough to experience the same total loss of hearing again which lasted for approximately twenty minutes this time.

Last night I slept and woke, slept and woke once again with pain and nausea. The strangest thing happened though and that was one of our cats, Cosima was up on my pillow and she was licking my head. She has done this before, it was for a period of time prior to being diagnosed with my tumour and she has not done it since however last night she was very persistent. I think perhaps she is concerned about me and this is her way of looking after me and trying to make it all better.

The wind was howling and whistling along the side of the house and I could hear rain hitting the window pane, it sounded extremely bitter however the outside temperature was actually quite mild. We had running training again today, this time a long run of fifty minutes along the trails around the AIS area. Even though the temperature was well above average the wind was too arctic to go for a walk and the rain had eased but changed into what appeared to be sleet falling softly from the grey morning sky. I started on a Sudoku puzzle but nodded off to sleep while we waited for Jarrett and the squad to return from their run. At least I was able to gain a half hour extra sleep, I think I am able to get about five hours sleep if I am lucky on any one night and that is on a good night, many other nights I am waking nearly every hour with pain, discomfort and feeling ill.

After running training we came home for a warm drink, they always seem to warm not only your stomach but leave you feeling comfortable and warm all over. We then played Upwords and decided to rug up and venture out to Belconnen to see if we could find any fairy ornaments for my Fairy Garden there, unfortunately we came home empty handed.

Cold, miserable days provide a great opportunity to watch a movie, so we decided to watch a comedy to make us all laugh and break the dismal mood the weather had caused. Billy Madison which is an Adam Sandler Movie is what we chose to watch and we all enjoyed a laugh.

Denis visited and brought boxes of athletic magazines and books for us all to look through, with wet weather predicted for next week I think we will be well occupied with these. It was such a generous thing for Denis to do.

My fingers are tingling as I am typing this so I think I should take a break. Tomorrow I have an appointment with my Paediatrician, he will be able to write the letter for me to get my hearing aid that my oncologist did not do. I will also be able to ask him a few questions about some of the effects I have been experiencing and hopefully he can shed some light on them.

'Sometimes we are dealt a difficult hand in life but no matter what happens we have to stand tall and move forward because life goes on'

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'

Tuesday, July 6, 2010


5th and 6th July 2010

From glorious sunshine to inclement, wet weather, how easily weather can change from one extreme to the other. It was virtually snowing today as once again Canberra experienced an arctic blast.

I started my day yesterday with my upper body exercises which I found were a little difficult, I think the cold weather made my muscles slower to respond. I tried to also ride the exercise bike but once again my knee just kept sticking and I could not make those pedals rotate.

Mum, Jarrett and I went grocery shopping, at least it was warmer this week than last week in the shop, they must have had their heating working this time. I bought ingredients to make some cupcakes because we were having Ally and her Mum Di over the next day and I wanted to make her something special. I decided on strawberry cupcakes with little butterfly decorations on top of the strawberry flavoured icing. In the afternoon I cooked them and I was really proud of how they turned out. We played Upwords twice and had a game of Buzz Pop Quiz on the Playstation and I actually won.

I found out that Borders in the Canberra Centre have sold out of all my books, so now the only way to get them is from Tass at IGA Deakin, from me or online. Kevin the Manager at Borders was really excited that all ninety books they had sold out in less than a month. With those ninety books sold they will send a cheque that I can then send to the Sydney Children's Hospital Foundation Brain Tumour Fund, I do hope that what I am doing is really going to make a difference, when I am in pain I don't want anyone else to have to suffer like I am.

My pain continues to cause me so many problems, it makes me feel fatigued, ill and weak, I continue to take pain killers, use heat and massage but it only eases for such a short period of time and the time frame is becoming shorter and shorter that I have any relief. I tried to stand a few times today but each time I fell, one time I slipped from Mum's grasp a little and I felt like my ankle twisted.

I watched MasterChef and was blown away by the challenge they faced, it was interesting that Peter was eliminated when Marion's effort on her purple macaroons was inedible. I am not sure sometimes how decisions are made and I think Marion is extremely lucky.

At 1.30am I heard the rain and wind outside the bedroom window and called out to Mum in pain, unable to straighten my right leg and I had dreadful pain in my foot. I had a lump on the side of my foot when I was in Year 4, they called it a Blastoma, it was painful then and I was unable to walk properly on that foot, I had to use corn pads, heat and wear soft shoes and it disappeared. This time it is more painful, it is swollen on the side and under my foot and even to touch it sends shooting pains up into my ankle. I might have to go to the doctors, for him to have a look at it if it does not settle down in the next couple of days.

Today was an exciting day even though it was so wintry and bleak because Ally and Di were coming over, I have been emailing Ally now for quite a while and we have spoken on the telephone but it was terrific to think I was actually going to meet this wonderful person who has become a special friend to me. When they arrived they were both so friendly and it was like we had known each other for ages. We chatted, played Upwords, did a puzzle game that Ally brought with her, made card houses, Ally taught me some card tricks and we had my cupcakes. Ally and Di gave me a very special cook book, it is one that was done to help raise funds for boys who have XXYY Syndrome, it has the most delicious recipes in it. Di brought over their extraordinary vacuum cleaner called 'Rusty' it is a iRobot vacuum and it was so cool, it vacuums the house by itself by hovering around and it even takes itself back to a home base to recharge itself. Meeting Ally and Di was marvellous, we will be keeping in touch and hopefully able to get together again, I think I have said before that I have met some of the most incredible people through my journey and that is such a gift.

Having visitors is terrific but I often find myself extremely tired afterwards and today was no exception, I had a rest on the lounge chair after they left then watched some Sabrina the Teenage Witch Episodes on DVD while the rain began to fall more steadily outside.

Nalani has to go to the Sport Physician tomorrow morning, hopefully they can help sort out her knee so that she is able to do all her sport again, she said she knows how I feel now, not being able to do the activities that you really enjoy.

Today was Bill's funeral and I was hoping that the sun would shine but as the rain drops fell it reminded me of the tears that many would cry for him today. Perhaps after the rain though a rainbow will shine for him to celebrate the wonderful person he was.

'Friendship is a living thing that lasts forever when it is nourished with kindness, empathy and understanding'

Sunday, July 4, 2010


3rd and 4th July 2010

My Wests Tigers proved that they have determination and courage on Friday night when they took on the Baby Broncos and in the dying minutes with a little Robie Farrah magic they came up victorious, winning 16-14, go the Tigers!

Even though the weather and my mood had been so miserable on Friday especially with hearing the dreadful news about Bill, my spirits were lifted by a surprise telephone call from Emily. I had kept in touch but had not heard from her and had trouble contacting her, she has been settling into her new school and home in Sydney. I have missed her terribly, she was my best friend last year and I had been so upset when I found out they were moving. We talked about so many different things and it was like we picked up right where we left off. Now that things have settled down for her, we are going to be able to keep in touch more.

Despite my wonderful telephone call and my team winning my night was disturbed with intense pain yet again. It is not just my right side now, my left ankle and foot are experiencing the same dreadful pain I have on my right, I can't understand what is happening and I am not sure my doctors do either.

How easily our dismal weather can change, the past two days have almost had a hint of Spring in them and the brilliant sunshine always puts a glowing smile on my face, I had thought that the warmer weather would help my bones but unfortunately this did not occur and I was still in as much pain as I suffer from in the colder weather.

I was sleep deprived as usual and had pain that truly consumed me but I was not going to let it distress me. I began my day by doing my upper body exercises there was one I just could not do due to pain, my leg ones are just not going very well at present and I could not even get on the exercise bike which I love because not only is my right knee sticking, so too is my left and they are both so painful.

With the warmer weather I was able to sit outside in my wheelchair and try to take in as much of that Vitamin D as I possibly could, hoping my bones would absorb it and give me some relief. I sketched with my left hand in a notebook a design for a fairy garden that I would love to make in the back corner of our garden where there is a pot plant feature with nothing in it or around it. My hand became extremely tired and sore so I had to stop, I watched Jarrett and Nalani shoot basketballs into the basketball hoop, I was unable to do it because I was too weak to reach the height, my upper body exercises might help me to be able to achieve this also.

Nalani could not run around though as her knee is not good, she had physiotherapy on Friday, she has to make an appointment to see a Sports Physician as it is not healing as it should, there is the possibility that she has a meniscus tear which may require further treatment and maybe minor surgery. They are hoping that she can get an appointment for next week so it can all be sorted out before she returns to school.

My head felt really bizarre on Saturday, it was painful and it had tingling also, it actually made me feel quite ill. Normally my scar where the fluid was drained prior to surgery gives me some grief but to have the other one give me trouble is most unusual. There is not much you can do either to assist with a problem like this one. Mum massaged it gently and it helped a little with the tingling but the pain remained.

Last night we watched Big Daddy on Television, it made me laugh, it is an Adam Sandler movie, he is in lots of comedies. I was hoping for an improved night sleep because the day had been so gorgeous weather wise but not all hopes are fulfilled. My knees were sticking in bed, I could not lie on my right side because of pain and both my feet just throbbed and tingled.

Another marvellous day, even though the thick, white, icy frost covered the ground the sun was up bright and early and it melted the frost quickly. Jarrett had gone for an early morning run around the Cross Country Course at school, he will be back to full training next week. I woke tired, feeling like I had only just gone to bed and exceedingly sore.

I played Upwords with Nalani, Jarrett and Dad while Mum was doing the house work and then we played Fairy Board Game which I have not played for quite a while because I had played it constantly last year. I was coming last, I just could not seem to roll the numbers I needed but amazingly in the end I rolled the right number to win the game.

When the weather is so terrific you need to make the most of it, so we went for a walk to the Town Centre, I really enjoyed being able to get out in the fresh air again. We just did some window shopping and then came back home. Even though I am in my wheelchair I become exhausted when I go out, I am not sure if it is from concentrating to listen to conversation or even the looking around the shops that does it.

I have felt a little useless today as my left knee has now started to give way from under me like my right one has done. I have had a few falls today with Mum holding me, once was when I wanted to go to the bathroom and I just could not stand at all. This worries me, I am trying to stand and walk but when your knees and ankles give way all the time and you fall no matter how determined or how much courage you have, you just can't do it.

Some wispy grey clouds are starting to appear in the blue sky, I wonder if tomorrow will bring another beautiful day. 'Every day is a new beginning, another chance to laugh, to love and to live your life to the fullest'.