Wednesday, September 29, 2010


27th to 29th September 2010

As Canberra has seen another dip in temperature I sit typing this entry trying to distract myself from my acute pain, I guess the change in weather has caused it, my right ankle, knee and hip and so tender and my knee and ankle are swelling as if they were a balloon been filled with a breath of air.

Monday in Canberra was a public holiday for Family and Community Day, families took the opportunity to spend time outdoors together in the splendid sunshine. Dad had to work unfortunately so we did not get to have the day as a family.

Nalani was extremely excited because she was going to Tuggeranong to the Sanity Store for a meet and greet with Short Stack, where she waited in a line for over an hour, finally getting to see Shaun, Bradie and Andy who are the members of Short Stack, she had their new Planets CD signed and had a photograph taken with them which is now her wallpaper on her computer screen.

While Nalani was on her marvellous adventure Jarrett and I played a game of chess which Jarrett won, then Mum, Jarrett and I went to the school oval and played a game of cricket, we all had turns at batting, bowling as well as fielding although fielding for me is quite difficult, you can't move a wheelchair around on the oval very well and certainly can't go for a diving catch, with a somersault at the end like Jarrett does. We had a terrific time, except a fierce wind came up and the ball was being blown around everywhere so we decided to call it quits.

We played Upwords when we came home, then went for a walk to the Gungahlin Town Centre for some milk, when we were coming back I had another seizure, we were all talking and then the next thing I knew Mum and Jarrett were lightly shaking me and asking me if I was okay, apparently my head had dropped when I was being pushed in the wheelchair, I felt really fatigued and had the pins and needles through my right hand and arm again, these lasted for a few hours afterwards.

In the evening as I was playing my Nintendo DS I developed the most dreadful stomach cramps which made me feel really ill, I went to bed with a heat pack on my stomach, as you can imagine I woke throughout the night with the pain, perhaps it was from something I ate, if I eat too much cheese or eggs I find that I suffer from these type of stomach cramps, we had had a delicious baked macaroni cheese for dinner, it had lots of cheese, cream and eggs in it so they must have been too much for my stomach. This is an issue that the doctors are still investigating and have no answers for me as yet, perhaps it is from the chemotherapy or another medical condition that has appeared.

We had a funniest home video moment although it wasn't really funny until afterwards at the time it was actually a little frighening especially for Mum. We have a sandstone coffee table with a thick rectangular piece of glass that sits on top held on with suction caps. Mum was bringing a kit kat chocolate to me and she misjudged where the edge of the table was, she banged her knee into it, fell, as she fell she knocked the glass with her arm and it flipped which was quite terrifying as it is so large and thick, the tissue box and coasters went flying and the glass landed on Mum's back. Mum was not injured, just a little bruise on her back and knee and a little embarrassed, which is a miracle really, it was just the most freakish incident. When we knew that Mum was actually fine we all burst out laughing even Mum, then Jarrett decided to do replays of the event and that made us laugh even more.

Tuesday I still had the pains in my stomach, panadeine and heat packs were not helping relieve it, I guess though having the stomach pain took my mind off my knee and ankle pain for a while which was still there but the stomach pain was much worse. As the morning progressed I think the medication kicked in and the pain dissipated slightly which was a relief as I had physiotherapy.

Rhiannon did some work on my ankle and knee then while I was holding onto both her hands I had to practise some walking, I had to walk around three cones, this is to try to help my balance. My ankle was extremely painful while I was doing it although I was not putting full weight on it as it still has not healed properly yet from my fall in Sydney at physiotherapy, because I want to progress I pushed through the pain, I think when you really want some improvement you find that inner strength. However when we got home I paid for it, my ankle had swelled and was throbbing with pain, I used ice to assist with the swelling but had to wait until it was time for my next pain medication.

In the afternoon it was Jarrett's appointment with the Speech Pathologist, it was an hour appointment, she said he does have vocal chord dysfunction which is the common American term for it but in Australia it is also known as Paradoxical Vocal Chord Movement (PVCM), this means that his vocal chord randomly closes instead of opens when he is breathing during his running. We were shown a model of a throat and vocal chord and she explained it all, it was really interesting. He then had to do some exercises which closed off his vocal chord and Mum and I got to do them too so he wouldn't feel awkward. Then we were given different exercises to help open them up again. It was incredible how it felt so different when they were opened up, I can now understand how frightening it must have been for Jarrett to have it happen. We were told that no one can actually die from having it happen but you can have a lack of oxygen because of it and pass out. He has some exercises to practise every single day and ones to practise when he is running, he has to find out which ones work best for him. Within a month he should have good control over the condition and hopefully will not have such a severe attack as he did at Nationals ever again but if he does he has techniques he can use to assist and it will not stop him from running which was the most important issue for him. By practising his exercises everyday it will most likely help him to be a better runner and could also reduce his reliance on his asthma medication. He has to report back to the speech pathologist in a month and then she will decide whether to review him then or wait a little longer. I wish that my pain, fatigue and seizures could be fixed as easily as what Jarrett's problem can be. He does have to be dedicated to doing the exercises every day though or it will take longer to fix, he will have to do these for the rest of his life.

Tass, my number one salesman came and visited last night, he brought a magazine called Country Style to give to me, a reviewer called Annabel had written a review on my book in it, she said that my book is written with clarity and precision and is candid and uninhibited and is a brilliant guide for patients and their families and friends and she hopes that it is chosen by High Schools as a study text. When we study text at school sometimes they are rather boring, I hope that if my book was a study text at school that the students reading it would find it inspiring and interesting.

A southerly change engulfed Canberra late yesterday and as a result my bones and joints suffered, my whole right side of my body ached and my left knee and hand were also painful. Then during the night my head throbbed where my two scars from surgery are, this has not occurred in a long time, even to lie on either of them was like placing my head on a pillow of nails. A lack of sleep made me feel nauseous this morning, even my cup of tea did not sit very well on my weakened stomach. I tried to do my physiotherapy exercises and ended up in tears because it absolutely hurt to do them, how frustrating, a change in weather caused this many difficulties.

Pain killers offer some relief but it is dreadful to have to live on them every single day, but then again compared to the toxic drugs I had to endure for my chemotherapy I guess they are nothing. I have spent today quietly at home trying to find ways to distract myself from my constant pain. It is Tinkerbelle's Birthday on 14th October, she will turn one and I decided to make her a rainbow pom pom to play with. We watched a comedy movie, a good laugh is always good medicine and relaxing can often assist pain, I even try imagery, where I try to visualise a beautiful place, a rainforest with trickling water, fresh, moist air and wildlife singing their sweet harmonies, but then the pain wins through and takes the vision away.

I have been asked by an extraordinary lady called Christine who is working on a project called Australian Inspiration to provide a couple of my quotes for a book that she is putting together as well as a register in the form of a website which is to be launched on Australia Day 2011, the register will celebrate the collective voice and spirit of Australia. I am so very excited at the prospect of assisting her in her project, she has already used the title of my book as one of her favourite quotes. She is funding this project as a gift to the Nation and I think that is a phenomenal thing to do.

'Pain may wish to destroy my spirit but I have a greater strength from within and that is courage and hope'

Sunday, September 26, 2010


25th and 26th September 2010

I think life is what the morning was like in Canberra, often filled with cloud but when the clouds that cover our skies finally clear then our day is filled with sunshine and hope. An overcast, indifferent morning greeted us at the AIS for running training and when the breeze came up also, it was actually very chilly. Jarrett and the squad were doing 400m repetitions, eight in all, two sets of three followed by a set of two and in between sets a 400m walk. We watched Jarrett, since his severe asthma attack at National Cross Country Mum has been observing him very closely, that is what Mum's do, they always worry about their children. There was nothing for her to be concerned about though because Jarrett ran extremely well, doing excellent repetition times. By the end of training the sun had finally decided to grace our skies, you could feel it becoming stronger by the minute.

We had to drop Nalani at the Mall after training because she was spending the day with her friend watching a movie called Charlie St Cloud, with Zac Effron in it and then they were looking at clothes and buying a Birthday present for a friend. We went to the Life Line Book Fair to look around, I found a book on gardening and a couple of novels to read. In the afternoon we had to pick Nalani up, she said the movie was fantastic although it was quite sad in parts, she said she would recommend it to anyone. I found that even though I had not done an excessive amount, it had tired me and when I become tired, my pain becomes worse and I often feel quite nauseous also, it is so hard to learn what my limitation is, as some days it is much less than others.

In the afternoon I actually had another seizure where I blanked out, my paediatrician said this is an absence seizure, my pupils dilate and I have to be shaken gently to bring me back. This time though my arm did not droop, but I did have really dreadful pins and needles for a couple of hours afterwards and felt so drained of energy.

I rested and then I played two games of Upwords, helped with dinner and then it was time to sit and watch the football. My Wests Tigers were playing the St George Dragons in the preliminary final to see which team would play the Roosters who had already qualified for the Grand Final the night before. My heart was beating so rapidly, I can only imagine what it would be like for the players, they must have been so nervous when you have played and trained which such commitment all year the ultimate goal is to make it to the Grand Final.

The Tigers showed such enthusiasm and courage despite a large penalty count against them, they deservedly scored the first try and Benji converted, it was 6-0. Unfortunately, due to some luck and poor refereeing the Dragons came back and scored their first try and converted to even the score at six all. Close to half time though through Tiger magic they scored under the posts and of course Benji easily converted, the score at half time was 12-6 in favour of my Tigers. I was feeling confident as the Dragons had looked rather flat and had been known to have trouble coming back from a deficit at half time throughout the season. I kept thinking that the Tigers would have to stay strong in defence in the second half or they could lose.

The second half was tightly contested, the Dragons scored another try which was converted early in the half, with the score at twelve all, my palms were sweating, my heart rate had increased and my stomach was churning with butterflies, each team made errors, made break throughs but nothing eventuated from them and then in the last minutes of the game the Dragons were down near their line and had positioned themselves for an attempt at field goal, the ball went up, I held my breath and willed the ball not to go over the posts but agonisingly it went over, the flags were raised, it was a field goal, the Dragons took the lead 13-12. There was still time and the Tigers with all their courage and determination were not out of the game, they had chances but they just did not seem to have luck or the referee on their side and right down to the final hooter they were still trying but it was not enough. The Dragons had won and will now play in the Grand Final next Sunday against the Roosters.

I felt so devastated, as I saw the looks on the players faces I cried. I think I would have rather seen them lost by a large score like the Titans the night before because losing by one point is shattering. After the shock and disappointment, I thought about my own journey and my favourite quote that has seen me through the worst times of my life, 'you have to go through a storm to get to a rainbow' - the Tigers have gone through the storm this year and I truly believe that 2011 will be the year of the Tigers!

I had an extremely unsettled night with pain in my right ankle and knee and I think watching such an emotional game of football before bed does not help either. This morning my ankle was swollen and stiff, I was tormented with pain when I bent it and it brought fresh tears to my eyes. Today was running training again at the AIS but it was Jarrett's long run session, today he did an hour run, again no problems with his asthma. We went for a walk in the sublime Spring sunshine that radiated so brilliantly from the crystal, clear blue sky. The warmth on my ankle eased my pain just a little. Seeing the vividly coloured birds flying fervently through the skies, the intense colours of the blossoming bush and the excited chatter of passersby made me appreciate being able to be part of such a dazzling day.

My disturbed night had left me feeling exhausted, even though I had thoroughly enjoyed and been delighted to be outside this morning I needed to come home for a rest. Resting revives me and I was able to write a Christmas list for my Nana and Pop, they say "no list, no present", I think they are only joking but I did mine just in case they aren't.

The next activity I was ready to pursue was my canvas painting, I began with my tree trunks and then mixing a delicate lilac and pink I used a sponge to create the effect of alluring blossom trees. I am delighted with how my painting is looking and hope to complete it during the coming week. Jarrett and I decided to play PlayStation, we played Rugby League, the first game we played was Tigers verse Dragons and we were able to get revenge for last nights game, we flogged the Dragons, which put a smile on my face. We were an unbeatable team and went on to defeat Manly, Roosters and Panthers.

I have overdone it again, painting and then PlayStation, my right hand is now swollen, painful and unable to grip anything. I just want to be able to do what any other young person can do in a day, I forget sometimes that from my high doses of toxic treatment , having the capacity to be like my peers is just not possible and it never will be.

Tomorrow is a public holiday in Canberra, it is called Family Day, however Dad has to work, they are doing building renovations at the Race Course, everyone else in his office has the day off except for him. Mum, Nalani, Jarrett and I are planning to go to the oval and play a game of cricket if the weather is as beautiful as today. Jarrett also has to do running training, on a Monday he goes for a thirty minute run. One of Nalani's friends is going to take her to Tuggeranong for a meet and greet at Sanity for Short Stack they have released a new song called Planets and will be selling and signing CD's, Nalani and Catrin are colossal fans!

'Our thoughts and actions from today can shape what our own and the people around us tomorrows are to be'

Friday, September 24, 2010


23rd and 24th September 2010

Another sleepless night due to the vicious circle of pain in my right knee and ankle, that is what I have to face though and as with every obstacle that I face in my daily life I try to find a positive side to it and bravely forge on with my life.

My morning started by doing some drawing, I decided to draw what I thought the Myer Christmas Bear would look like this year, I am a collector of the Myer Christmas Bears and Theodore is my favourite, he has been travelling my journey with me and I would be lost without him. Once I had finished my design Mum showed me what the Bear looked like, this year his name is Charlie, he is a cuddly brown bear, with a lime green top and a red and white candy stripe scarf.

I then sketched my design on my canvas and started to paint, the first thing I painted was the rainbow that is at the end of the path, as I painted it I contemplated how important a rainbow is to me. They are so vibrant, captivating and magical when I see a rainbow in the sky or in a picture it brings a feeling of happiness into my life, in my painting that is the feeling I am hoping to recreate for others.

After a rest because painting had made me quite fatigued, Mum and I then played Upwords twice, I feel that Upwords has helped me with my spelling and vocabulary, playing it is something that I think many children should do as not only do you learn you also have lots of fun.

The time had then arrived to go to my Australian Hearing appointment to collect my FM Transmitter, this amazing piece of technology like my hearing aid will make an enormous impact on my learning because I will be able to hear much more clearly and precisely what the teacher is saying. My hearing aid is beneficial by itself in a quieter environment however at school there are so many outside, background noises I was still having difficulties hearing what my teacher was saying. My FM Transmitter is a Oticon Amigo, it has a receiver and a transmitter. I have the receiver which is set to a channel that matches the transmitter, my receiver has headphones which I attach to it, I am able to change the volume on it so that it allows for louder and quieter teachers and a louder or quieter classroom environment. The teacher has the transmitter, they attach it to themselves and have a omni directional lapel microphone which they attach to their clothing and the talk normally, because I have the receiver I am able to hear the teacher clearly the whole time they are teaching instead of them dropping in and out. They have a mute button on the transmitter so if they need to talk to another student or teacher they can mute it so I don't hear unnecessary conversation. Both the transmitter and receiver are lightweight and have rechargeable batteries, this is going to make such a difference to my learning next Term, I can hardly wait to use it. I go back on the 8th of November for a review, I am hoping that I will be able to give them really positive feedback from using the FM transmitter.

In the afternoon we had running training, the weather was incredible, it was a spectacular Spring afternoon, as Jarrett did his training Mum, Nalani and I sat on a blanket in the sunshine. Nalani did mathematics homework and I did some knitting. The grass had been mowed and there was tiny pollen particles blowing through the air and settling on the car bonnet as a thin yellow film. Jarrett's hayfever flared up, his chest and throat became tight, he had to pull out of the last repetition so that his asthma would not cause dreadful problems again. Jarrett is now looking forward to his appointment with the Speech Pathologist next Tuesday so that his vocal cord dysfunction can begin to be treated and he can move forward with his running again.

Before bed after doing my physiotherapy exercises I used my Rollator, my right ankle still is unable to take too much weight, it stops me from progressing but I grit my teeth and bring forth that determination that has helped me throughout this difficult journey and I can achieve amazing feats. I was able to walk one full lap of the family room and kitchen without stopping for a rest, it was a little painful and towards the end my balance was rather wobbly but I did it. My ankle was rather painful as I went to bed but my achievement made it all worth while.

Today I woke early because Short Stack were performing on Sunrise and I really wanted to watch them, Nalani and her friend Catrin had seen them in concert earlier this year and got to meet them, I had been so fortunate to have Short Stack telephone me and speak to me on the night, not only are they talented musicians, they are really nice guys. Liam who is their touring member was at my book launch, he is the son of the truly extraordinary Paul who was the man behind my book without him, Tess, Gavin, Ben and many others my wish would have been put in the too hard pile and not have eventuated. Short Stack performed their brand new single Planets on the show, it was terrific to watch them and hear their song their music is so cool.

I went to school today, it was Mufti Day which is a non uniform day, if you wear non uniform you make a donation which in turn is given to a chosen charity. I decided to wear my jeans and my Tigers Jersey that Benji Marshall gave to me at the game I went to against Canberra back in April. School was fairly laid back today, I watched some presentations that the class did on Wetlands and then coloured in a geometrical picture which the teacher wants to hang in the class next Term. My right hand fatigued quickly so I used my left then it became fatigued so I had to have a break from colouring. I also put together my portfolio of work that I had done this Term. I was extremely proud of the assessment marks that I achieved on the work that I completed, one day I hope that I will be able to do the same amount of work as the rest of the class but at the moment it is just too much for me to cope with.

When I came home I had a warm cup of tea, had a rest and then painted a golden path on my canvas, the golden path leads to the rainbow and I think that my painting is looking really spectacular. I will be doing more painting during the School Holidays, when I paint, I paint with my heart and with lots of love.

Today I have had pain, I find that the warmer weather assists to some degree but it does not take it away as I had been hoping it would, I rely on pain killers which work better on some days, yet on others I find it more difficult to cope with the level of pain that I am experiencing.

We have had no news on when Nalani's surgery has been rescheduled to as yet, it will most likely be at the end of November now, she is disappointed as she really wanted it all to be over and done with and able to move ahead. She is unable to still participate in her sport but has found that going to the gym for PE and Human Movement is something she can do, so she is going to continue to do this to help with muscle tone and fitness until she does have the surgery.

'Having a family who love you and encourage you is more precious than the biggest and brightest diamond in the world'

Wednesday, September 22, 2010


21st and 22nd September 2010

We woke to a light fog that hung gracefully in the Canberra skies, almost like a Bride's veil, however as we drove towards the AIS it had lifted completly and revealed what can only be described as a glorious Spring day, the perfect day for running, apart from the fact that being Spring there were many pollens floating along through the air.

Jarrett had come home from school the day before with itchy eyes, sneezing and a runny nose, an antihistamine helped a little but he was not one hundred per cent, he seems to be having the run of bad luck at the present time. His first race was the 1500m, the paediatrician had told him to run it comfortably at around 80% of his usual pace and not to push himself too much. The gun went off and he lead the pack of fifteen year old boys and girls, another boy Riley was running virtually neck and neck or just behind Jarrett for most of the race and then in the last four hundred and fifty metres he took off, Jarrett could have easily taken off after him but he followed the paediatricians instructions and ran easily. He ran a time of 4:31:36 which was a good time and he came second, he was smiling when he finished and had no problems breathing at all, it had been a gentle run for him with no asthma difficulties, he was so relieved.

The sun was so wonderful, its warm rays assisted my bones, although I was still in pain it was not as severe as it is on colder days. I had a lady from Sydney who does the classifications for Athletes with a Disability come and talk to me. She said that she felt that I should be a lower classification than the provisional one that I have been given, she was going to contact someone to have them do a face to face assessment as soon as possible so I can compete in the Interclub Competition at the AIS which commences in October. She also coaches athletes with a disability and she said she was so impressed with my courage and determination to do my athletics and she said she was sure that I would be competing at the Paralympics! How exciting would that be, Jarrett has a goal to compete for Australia at the Commonwealth and Olympic games and I could be there too showing athletes with a disability that no matter what you go through in life you can continue to compete in the sport you love.

It was then time for Jarrett's next event which was the 800m, this distance is a little short for Jarrett, he is a much better longer distance runner, for him the 800m is a sprint. It was a curved line start which means that all competitors in the race start along the line, when the gun went off Jarrett found he was boxed in and had a dreadful start. Around the back straight he put down the accelerator and pulled ahead of the pack, however Lachie who is the best 800m runner in their age group was ahead and although Jarrett ran well, he had no chance of catching Lachie who has terrific speed. Jarrett came second again in a time of 2:11:64 which he was reasonably happy with, he had thought he had a personal best as he went across the line but this time was not quite. Once again he had followed the paediatricians instructions and only ran at 80% of his normal pace and although he was a little tight in his throat, he had not had an asthma attack. I was so excited for him, because he came second he has now qualified for both events in the ACT Championships which are on 4th November, by then his asthma and his vocal cord dysfunction should be well and truly sorted out and he will be able to run at 100%.

Although I had enjoyed watching Jarrett run and being in the splendiferous Spring weather, I was virtually falling asleep in my wheelchair, just cheering Jarrett on had exhausted me. Even though the sun had been on me for the day, my ankle had become extremely painful again. When we came home, I had a sleep but woke with a headache, it is probably from the sun. We had a quiet night, Mum, Nalani and Jarrett had to go to parent teacher interviews, so I spent half an hour with Dad playing Upwords. Then Mum and I worked on my French dialogue for the assessment, I wrote it on a palm card to practise it but was not able to do it off by heart.

I fell asleep quickly but woke intermittently throughout the entire night feeling uncomfortable with pain and stiffening joints. I was also extremely nervous about my French Assessment which was today. When I woke I found that I knew my dialogue off by heart and was amazed, I had left it on my bedside table overnight, maybe that had been the secret to why I was not able to do it last night but could do it perfectly this morning.

The weather today was not quite as glorious as yesterday but the sun was shinning and then hiding behind the clouds making it that little chilly at times. I had butterflies in my stomach and my hands were shaking as we headed to school. It was almost as bad as going through chemotherapy, I remember I was so nervous each time, even though I tried not to be. The teacher was playing French music for atmosphere in the classroom and he played the distinguished French Waiter Role. I began to feel as if I was going to vomit and was willing it to be my turn. Finally he came to our table and I ordered in French - I said "Bonjour, Je voudrais le chocolat chaud, j'adore le chocolat chaud", I was going to say more but because he had to get around the whole class I missed out on my ending part, however he came back to me at the end and asked what else I was going to say and I told him - "parce-que c'est delicieux! Merci!", he was really impressed and said I did a terrific job. What I had said in my dialogue was - "Hello, I would like a hot chocolate, I adore hot chocolate because it is delicious. Thank you". The hot chocolate was actually really very rich and I ended up giving half of it to Mum as it was just a little too strong for my stomach. So all my butterflies and nerves were really nothing to worry about, Mum told me she was so proud of how I had done.

I then had textiles and we made our own loom using wool, builders string line, a special loom card and a keyring. I actually discovered that a wheelchair is extremely useful for doing this type of activity, while other people had to have calico around their back and use their backs to provide tension, I used the arms of my wheelchair and while other students backs become tired and sore, I found it easy. The loom had holes and slits and some of the builders string line went in the holes the alternate pieces of line went through the slits, when it was moved up you weaved through the strings that were attached to the holes and when the loom was pulled down you weaved through the string that was through the slits. I thoroughly enjoyed my textiles lesson today and was so excited to hear that knitting is our first task next term.

Today I had my appointment with my paediatrician, he went over what we had discussed last appointment and then we talked about new issues like my seizures, which he is certain they are absence seizures, caused by the tumour and treatment. He thinks that the prolonged pain and loss of muscle after the seizure is a complication of the treatment. He weighed and measured me and told me I have grown a few centimetres and have put on 500g in weight which he said he is extremely pleased about I am now 147.5cm tall and weigh 28.8kg. He also said that I am not to put full weight on my ankle for a couple more weeks and once I can to take it steady. He was very excited about Rhiannon getting me a rollator and said it is a definite step forward. My right side is relatively weaker than my left again and he agreed with my radiotherapy doctor about the fatigue for some people it is almost like a chronic fatigue syndrome after treatment for cancer. My tumour has changed shape however it is hard to determine whether it has enlarged, future MRI's will determine that. He had not heard from my oncologist who had said he was going to contact him, so he said he was going to write to him and fill him in on his opinion. I have to go back to see him in three months unless I am having any new issues or my seizures become worse. My oncologist and the Team in Sydney want me to go back in October and stay for at least three weeks for more tests, however my paediatrician feels that some of the tests could be done here, as he thinks that being home around family and friends is the best form of treatment, he also said in a cancer journey everyone is different and it has not even been twelve months since my intense treatment finished and he thinks considering the extent of my tumour, surgery and treatment I am doing reasonably well.

When I came home, I entered some competitions on the Total Girl website, played Upwords, decorated the photo frame for Mum's Birthday and made her a card, before having a rest, today had been quite a full day and it had taken its toll on me. After doing the card and photo frame I also found that my right hand had weakened again, I think I over used it.

'Beginning today and lasting a lifetime, don't be afraid to feel like the stars are shinning brightly just for you'

Monday, September 20, 2010


19th and 20th September 2010

High cloud lifted briskly and the Spring sun shone down brilliantly when we were at the AIS for running training on Sunday. Jarrett was doing a shorter run this week as on Tuesday he has ASC (Associated Southern Colleges) Championships. It was the perfect morning for a walk around the perimeter of the AIS and as we walked several other people had ventured out also in the delightful weather. Along the walk we were surprised to see a family of wild rabbits out in the sunshine twitching their alert little ears and hopping around outside their burrows. There was a really tiny baby one huddled in close to what would have obviously being its mother. We were able to get quite close to them before they hurriedly scurried back into the safety of their burrows. The Kangaroos were also out sunning themselves on the grass, blossom trees of pastel pink and white were in full bloom and a kaleidoscope of colourful birds filled the air with their melodious songs.

After running training Mum, Dad and I went to Magnet Mart, Nalani and Jarrett had homework to finish so they stayed at home doing that. Magnet Mart was crowded with people buying gardening supplies and plants for their gardens. We bought some shrubs for the front gardens where the pine trees that had over hung the drive way once were. I helped choose them, we bought an Astarea Winter Pink which is covered with masses of deep pink tea tree flowers, Little Charmer which is an evergreen shrub with clusters of rich purple winged pea like flowers and Fairy Star which has a fine grass like foliage with shell pink star shaped flowers that provide a prolific display. We also got some pots of colour to go into a large pot that we have and we put that beside the front landing. I found two little fairies to sit on my wishing well and you can see them in my picture and on top of the well I put a pink and a blue butterfly. I am delighted with my fairy garden and hope that it will be magical and bring happiness to everyone who sees it. It is not large but it is not size that matters it is about what it means and for me it means hope and love.

After going to Magnet Mart we then played Upwords, I did some decoupage, a special photo frame that I am going to put a photograph of me in one side and Mum and I in the other and give it to her for her Birthday in October. I played playstation with Jarrett we played Crash Racing and then Tennis we laughed a lot and had a splendid time. At night I watched Junior Master Chef and continue to be blown away and amazed by the talent of these young Chefs. I love cooking and always feel really proud of what I achieve but there is no way that I could cook most of the dishes that they are producing and many of them are younger than me.

My right arm has improved, it is no longer drooping, it remains a little weakened but I am grateful to have it almost normal. My right hand though is still painful and I am having difficulties gripping things in my hand. My ankle is still giving me grief, although I am working tirelessly on my exercises that Rhiannon, when I try to put too much pressure on it it becomes weak, extremely painful and swells. After walking with my rollator on Sunday my right knee locked up, swelled and was throbbing with pain.

I had my usual restless night sleep with pain, a cough and running nose, Mum as usual was there to give me comfort and help. When I woke this morning I was so delighted to see the sun shinning once again. I did not have school today however we had to go as Mum had an appointment for a SCAN meeting for me, a SCAN is a Student Centred Appraisal of Needs, the Department of Education and Training representative meet with the Teacher, Parent and the Principals Delegate to discuss various areas of need for a student with a disability or who has had an illness. The appraisal determines educational needs for me and often additional resources are given to the school to assist me. While Mum was in the meeting I did some colouring in in the library. By the time Mum had finished in the meeting both my hands were so fatigued, so I was pleased to be returning home.

A person from Therapy ACT was supposed to come and visit us to look into Occupational Therapy needs that I may require to assist me at home and school, however we received a telephone call to say that she would not be coming today and our appointment was cancelled. So I did my Mathletics homework, played Upwords, had a rest and sorted through my Barbie Doll box.

Tomorrow because Jarrett is racing and we have to take him to the AIS I will not have school, however Wednesday is the French Assessment, I am not feeling confident about it, but I will do my best and hopefully that will be enough to pass. Luckily there are no snails on the menu because I would hate to order them by mistake!

'Turn your face to the sun and the shadows will fall behind you'

Saturday, September 18, 2010


17th and 18th September 2010

Friday was an enormous day for Nalani, it was the day that she would undergo surgery on her left knee, whether it was to be repaired or reconstructed we would not know until the surgeon went in with his arthroscope. Originally she was supposed to be at the hospital in the morning but it was changed to arrive at 12pm. So in the morning we played a game of Upwords to try to make the time go more rapidly.

I had not slept well during the night with that same aching pain in my ankle, knee and hip and a more severe pain that throbbed through my right hand and left me unable to hardly move my fingers. I was pleased that we did not have to be at the hospital at the crack of dawn but really felt for Nalani having to wait longer, it is much easier to get something over and done with quickly.

We drove to the hospital and Mum was relieved to find a parking space, hospital parking anywhere in Australia can be difficult. When we arrived we had to fill out some paper work and then we were told to head to the ward that Nalani would be staying on overnight after her surgery. We waited for them to process the paper work and we were then told to go to the waiting room and she would be called when it was time for her surgery as no beds were available at the time as they were waiting for patients to be discharged to go home. She did not have too long to wait until 1pm when her surgery was scheduled for, so we relaxed in the waiting room chatting and laughing about some of my funny hospital experiences.

We waited, 1pm came and went, 2pm came and went and still Nalani had not been called to surgery, so Mum went to inquire how long it would be and we were told it should not be too long they were just running a little behind. When 3pm came we were all feeling quite anxious not to mention Nalani feeling extremely hungry and thirsty, she had been starving since 7pm and had not had any fluids since 9pm. As the clock ticked loudly in the waiting room and Nalani's stomach groaned, we were wondering what was going on. Finally just before 5pm after Mum had again questioned them at the nurses station we were advised that there had been an emergency and a couple of cases that had complications, so Nalani's surgery had to be cancelled for the day as there was no more theatre time allocated. Nalani was upset, she had been starving for so long and had been anxious about it, and now her surgery was not going to take place. She actually felt extremely dizzy which they said would be from dehydration from fasting for so long and that her sugar levels were probably quite low, we were advised to go to the Cafeteria and have something to drink and eat. We will be contacted next week to reschedule the surgery for a later date, which is all rather disappointing for Nalani as now she will not be back at her sport as soon as she was hoping to be. It had been such a long day, I was feeling exhausted and also from being in the hospital air conditioning my cold had become worse and I had a dry, croup sounding cough.

These things occur but it seemed very unfair to happen to Nalani, especially when this is her first surgery, I think she is a little put off now and will have to prepare herself psychologically again. I guess I was also thinking that we seem to have all the unfortunate luck and have certainly had a run of it lately with my results not been the best, Jarrett's asthma, Nalani's injury and now a hold up on her surgery.

I was hoping that the Wests Tigers would have better luck than what we did, I was utterly exhausted but I wanted so desperately to watch my team play. In the first half I was over the moon with how they played and when they were leading I felt confident, the best news had been that Benji Marshall was playing and he played with so much courage and determination I was so proud of him. The second half was a different story to the first, the Raiders came charging back into the game, my stomach was filled with butterflies, it was almost like the game the week before against the Roosters. The Tigers were two in front with minutes to go when the Raiders were given a penalty within kicking distance to level the scores. The kick was taken and even though I was pleased the kicker missed, I felt so sorry for him, as he looked so devastated. I was on the edge of my seat until the final hooter sounded and my team, the Wests Tigers had won by just those two points 26-24. What a game, it had been a real cliff hanger, both teams had played their heart out but only one team can win. I thought it was really wonderful when Robbie Farrah went over to the Raiders kicker and consoled and encouraged him, that is terrific sportsmanship. Now my Tigers have to play the Dragons in the Grand Final Qualifier next weekend, I so hope that they will have the courage and determination to go on to the Grand Final.

I went to bed feeling so tired and was sure I would be able to sleep soundly for once, but that was a pipe dream, for I kept coughing throughout the night and I also had the excruciating pain in my right hand. I was so tired this morning as we readied ourselves to go to running training. At least the sun was shinning and the sky was a clear, crystal blue, at the AIS there was a slight breeze but the sun began to shine more brilliantly and it warmed my body and made me feel delighted to be outside.

Jarrett ran well today, he had no difficulties with his asthma which I think we all breathed a sigh of relief for. He is running in the ASC Competition on Tuesday, he will be doing the 1500m and the 800m. Hopefully the day will be as exquisite as what it was today. I will be there cheering him on loudly, to do well would really boost his confidence after having problems with his asthma, I think that if your confidence is boosted it lifts your spirits and your performance and that applies really to anything in life.

After running training we were expecting a very special visitor, Carol Duncan and her family were coming to see me. Carol has done so much to promote my book in the media, she is another one of those extraordinary people who I have been blessed to meet through my journey. I had spoken to her over the telephone and emailed her but never actually met her in person, so I was very excited and a little nervous. I was still feeling tired and not really well with my cold but her visit would brighten my day. When she arrived I received a wonderful, warm hug, I got to meet her husband and her two boys who absolutely adored Tinkerbelle, especially James who seemed thrilled to be able to give her a cuddle. Tinkerbelle decided to entertain them also by climbing into a paper bag that they had brought a gift for me in, she even decided to have a nap in it. We chatted for a while and then they were leaving to go and look at Floriade, they could not have picked a lovelier day for it. Floriade is a Spring attraction in Canberra at Commonwealth Park and it always draws many interstate tourists to look at the resplendent specially designed gardens that bloom so magnificently this time of the year. I was so jubilant that I finally got to meet Carol and her splendiferous family.

I rested in the afternoon as my cough had stirred up again as the weather cooled down, I did my physiotherapy exercises and even though my hand was still terribly painful, I decided to bite the bullet and have a go on my rollator. It was not easy with my ankle still pulsating with shooting pain when I tried to put weight on it and my hand throbbing as I held the handles but even with tears in my eyes I did it, I walked ever so slowly from the family room around the kitchen and back to the family room. I had to stop and sit down on my rollator as it has a little seat as the pain was too much to bear but I wanted to get back to my starting point and I did it and then I broke down and cried but I did it. Ice and panadol helped a little but that little walk had knocked me around. No matter how difficult a task may seem, it is always worth giving it a try, I think that there is no such word as "I can't" because if you just give it a go you will find you will be saying "I can".

Thursday, September 16, 2010


15th and 16th September 2010

During the night I had frightful pain in my right hand, it travelled up my arm in spasms and on waking in the morning it was tingling and had pins and needles. When I went to the bathroom I screamed out to Mum because one moment I was sitting there and the next thing I knew my right arm had dropped, it was heavy and the excruciating pain brought tears streaming from my eyes. Then I began to shiver a little, perhaps it was from the shock of it happening. Mum massaged it to see if that would help, but it didn't so once I was dressed we put it up in a sling so it would not just hang there, lifeless by my side. Having it elevated in the sling took some of the pressure off it but the pain was still throbbing from my finger tips up into my shoulder.

I had school and it was electives day and I did not want to miss them, especially textiles, so I took a deep breath despite my difficulties and we headed off. It was a cool day and the breeze was rather chilly but at least it was not raining, it had poured raining on Tuesday afternoon and become extremely cold. My class were finishing off some work from the day before and then it was time to go to electives. French was my first elective and we were practising our food likes and dislikes and giving a reason why. Then we had to look at a dialogue and answer some questions in English . Next week we are having our assessment and pretending we are in a French Cafe, we have to order some food and drink speaking only in French, the more complicated sentences that we can use the higher marks we will achieve. I am very nervous about doing this because learning French has been difficult for me to comprehend, I think that my sentences will be fairly basic, we are going to school especially for it next Wednesday. During French my arm pulsated with pain and I was almost going to ask Mum if we could just go home, but I did not want to miss textiles.

In Textiles we did some basic spinning by using a skewer with a paddle pop stick attached about two thirds of the way down the skewer with an elastic band to form a cross, then we had to tie a piece of wool to where the paddle pop stick was, we then did a special loop that made the wool sit along the skewer. We were then given some yarn, it was blue, one person spun the spindle we had made and the other held the yarn and gently pulled it as the wool that was along the skewer tightened and twisted it. It was amazing watching it spin and once it got going it spun very quickly into a piece of wool. I did some with Mum but then my left arm tired, so the teacher then finished it off with Mum. Next Term we are going to do knitting and crocheting, I am really excited about this because I already know how to knit and I am becoming rather quick at it, the only thing that stops me is when my arm drops.

Even though I had enjoyed Textiles, I was so pleased to be going home for the day, my pain had increased and I felt so exhausted, just like I had climbed Mount Everest. It was not only my arm and hand that I had pain, my ankle continued to be painful to bend, my knee was clicking and painful and my hip almost felt as though it was sitting out of place. A warm cup of tea, heat packs and panadol were the first things that I had when I got home and then I fell asleep, pain is demanding on my body and after my arm had dropped it had fatigued me. Mum thought about it and thinks that I may have had another seizure.

My nose was running when I awoke and the pain was still there but my arm did not feel quite as heavy so we took the sling off to see how it would go. Unfortunately without the support of the sling it became heavy and more painful so the sling went back on. I watched Tinkerbell and the Great Fairy Rescue DVD, it was a lovely movie about believing and friendship.

I had another sleep in the afternoon after my shower, when I woke up Mum told me that there was a surprise for me, my rollator had arrived, a day late but it had arrived! We adjusted it for my height and I had a little go of it but my ankle started to give way and had shooting pains when I attempted to put too much weight through it and with my arm out of action that made it difficult but I had a go, I think when my ankle recovers and my arm fixes itself that the rollator is going to help me to become more mobile. Rhiannon is so extraordinary for organising it, I don't know what I would do without her, she is the best physiotherapist in the world.

Jarrett had his paediatrician appointment in the late afternoon, he went for a run when he came home from school and then it was time to go, I could tell that he was a little nervous. He had to be weighed, measured, have his blood pressure and pulse done. He is not a huge boythat is because he does so much running, he only weighed 48.3kg, he is 162cm tall, his blood pressure is lower like mine, it was 90/68 and his pulse was fantastic, it was 64 the doctor was extremely impressed with that and it shows how fit Jarrett is. The results from his tests showed that he has a terrific lung capacity, that is because he does so much training, he definitely has asthma which is aggravated with exercise and the environment and the surprising result was that he also has something known as vocal cord dysfunction this is quite common in athletes who are also asthmatics, the doctor showed us figures from a conference he spoke at and five per cent of the American Olympic Team have it. Jarrett has to go to a speech pathologist to help him overcome this problem because when you have a vocal cord dysfunction your vocal cords tighten randomly, make it difficult to breathe, cause throat and chest pain so when he had his asthma attack at Nationals he also had the vocal cord tightening and this is what made it so severe and frightening. The doctor said that with the therapy and Jarrett's new asthma medication which is faster acting it will all be controlled quickly and he will hopefully have no further problems. He also said he will be watching for his name in future Commonwealth Games and Olympics, which you could see Jarrett was so relieved about, I think he was worried that this would stop him from running and his future dreams. He has to go back and see the paediatrician in January next year to make sure everything is improving.

After dinner I removed my sling again, this time with more pleasing results, my arm was not as heavy or as painful, however it was in my hand and it was almost like it was distorted. Throughout the night I woke with my hand feeling uncomfortable but found my arm was improving.

This morning my hand was still extremely painful and still a little distorted, it is still like that and I am unable to use it but I am grateful for the relief I now have in my arm, it now just feels a little weaker and I have some pain in my shoulder and neck from it. As Nalani is going into Hospital tomorrow, Mum wanted to do a bit of a Spring Clean today, I also decided to help, I got all my Christmas bears that sit in my bedroom and gave them a good vacuum with our special little hand held vacuum cleaner, it took me an hour and a half to thoroughly go over my eleven large Christmas bears. Of course I had to do it one handed so that made it a little tricky but I really enjoyed doing it because I could also rest at the same time.

We found out that Nalani is going to be kept in overnight at John James Hospital, her surgery is going to be done at 1pm tomorrow, we have to be at the hospital at 12pm which I must say is a bit of a relief for me as we originally we had to be there at 6.30am because they thought she would be scheduled for surgery first off the rank, although for Nalani it means she has to wait around and that may not be good for her nerves. Her surgery will go for about an hour, it depends whether the doctor has to do a repair or a reconstruction, he won't know until he goes in with his arthroscope. Then she will spend another hour in recovery to make sure she is stable. From there she will go to the ward that she will spend the night in, a parent can stay if she wants one but they have to sleep on a reclining chair and no food is available for them. She will then be coming home on Saturday morning with a knee brace on and on crutches, we have to take good care of her for a while so that she recovers quickly. It takes six to eight weeks to recover fully from the surgery and then she can start doing activities again, which I know she will be very pleased about. There will be lots of physiotherapy and home exercises for her to do as well as using ice for the first couple of days to help swelling and pain. I hope that everything goes well for her, I think she is a little scared as she has never had surgery or being in hospital before other than to visit me.

'Even when the skies are grey we can make our own sunshine from within, if our hearts are loving, generous and caring'

Tuesday, September 14, 2010


13th and 14th September 2010

Sydney had totally exhausted me, I felt so zapped of energy or spirit, I had school on Monday, it would have been easy just to turn around and say I just did not want to go but because I am determined and a fighter I found the strength to go.

At least the weather was not freezing cold, it was quite mild, a cool breeze hit my skin as we walked but it was not a bone chilling one thank goodness. Chapel was first as always on a Monday morning, we sang the song 'Lean on Me' as I looked at the lyrics and sang along I thought that my Mum has been the person that I have been able to lean on when I have not been strong and she has given me the strength to carry on. We learnt about the story of Esther and how she had been chosen to be the Kings wife, it was actually like a beauty pageant, he wanted the most beautiful woman for his wife. Her people were going to be destroyed and she chose to stick up for them even if it meant losing her own life. If we can have the courage to stand up and do good things to help others then God will be beside us helping us even if what we have chosen to do is difficult.

After Chapel it was time for PE and we were doing Cricket, Super 8's cricket, I was so excited, I had actually competed in a Super 8's Cricket competition when I was in Year 5 and I had enjoyed it. This however would be different for me because now I am in a wheelchair and don't have the same coordination skills I had then. The girls played against each other and the boys versed each other. I was fielding first, this is quite difficult in a wheelchair, unless a catch came my way it was too tricky to manoeuvre my wheelchair on the oval grass to field the ball. Then I got to have a bat, when you are in a wheelchair you don't get as good a swing as you would if you were standing but I must say the wheelchair blocked the wicket from being hit. I was able to get quite a few decent hits and I had a runner who did the running. Lastly, I had a turn at bowling, in Super 8's many people especially the girls can bowl underarm, or you can throw overarm which is what I chose to do, my first bowl was fairly weak but once I got the hang of it I felt I did really well. In my over of eight bowls three wickets were taken, two run outs and a catch so I was fairly proud of that effort. It could have been four but Mum dropped a fairly difficult on handed left hand catch.

Then it was time for Integrated Studies, we had to write a journal entry about the excursion they went to on Friday which I wasn't there or what we did on the weekend, we had to use descriptive language and emotive language, I wrote about my trip back home from Sydney. I told Mum what to write and she scribed for me, that way I was able to tell my story, if I wrote I would have only completed a sentence if I was lucky.

I was feeling so fatigued and started to also feel a little dizzy and nauseated, so I was glad when it was time to leave, we decided not to go back for the afternoon as it would have been too much on me. I also have come down with what appears to be a cold, I think I picked it up in hospital because so many of the staff were coughing and sneezing whilst we were there. My eyes were so droopy as I was pushed home in my wheelchair and I just collapsed into the lounge and had a good hours sleep before waking up and playing Upwords.

We had a telephone call from Speech Pathology giving my results from the test I had when I was in Sydney. In most of the testing I was borderline average, some I was below average especially in memory, receptive language and processing, my worst which was well below average was repeating sentences. She said that fatigue played a huge role in my life in regards to speech at the moment and my ability to memorise, she said it would need to be monitored, she is sending the report as it has some suggestions for school that may assist me, one of the things is that I will need more time than the average student to complete verbal tasks or need to refer to written notes to assist.

Guess what? I won the footy tips, I only found out when I came home and checked the games, Nana and Pop told me they thought I had won when the spoke to us on the telephone when we were in Sydney and they were right, I won by just one, it was so close, I actually feel a little sorry for Pop because now I have beaten him two years in a row, next year I will be on a hat trick!

I did some knitting in the evening but found my neck became really painful and stiff, all down my right side was also extremely painful and my ankle felt like a blazing fire as it burnt with pain. I did not sleep well with the pain even though I am taking the panadol that Sydney recommended four times daily. Seeing the pain clinic seems like a waste of time now as the tablets they recommended I was told not to take because of my hormonal issues. I also woke blowing my nose and sneezing, I have been fortunate not to have any colds through winter but this is really knocking me around and draining me of more energy.

Today even though the blossoms are abundant in the trees that line the streets the weather has taken a turn and gone back to Wintry conditions, the grey sky from the morning has progressively become an angrier grey and I feel that the rain is going to tumble from those heavy laden clouds very soon. When the weather changes my pain worsens, I guess that is what happens to people with arthritis also, I cried this morning because I felt so miserable not just with the pain but also my cold, I did not want to sit up for a while because I truly felt like I was going to vomit and I just could not stomach anything for breakfast other than a sweet cup of tea.

As the morning progressed I felt well enough to sit and then get up, I sat feeling very light headed in the lounge and worked on my final design to transfer onto my canvas to paint during the school holidays, it is the one I am doing for the auction next year, for the new Ronald McDonald House in Canberra. My inspiration has been Spring and the way it makes me feel, so I am hoping that it will turn out exactly how I am picturing it in my wind and in my sketches.

I was thrilled when the time came to go to physiotherapy, Rhiannon would be able to tell me exactly what was wrong with my ankle that was injured during physiotherapy in Sydney. I was going to try to walk a little into the treatment room but my ankle was just too painful and weak. Rhiannon looked at it and checked a few movements, she came back with the foot model and explained what had happened. When I fell, my ankle twisted, two bones in the ankle hit together almost like kissing and that has caused damage which will take just a little while to repair. I should not put full weight on it at this time but I have been given some exercises to do, one where I have to just sit on the edge of the bed or chair and without putting weight on it go onto tip toes and down, then I have one where I stand and I put just a little weight on it, my last one I pull my foot up with a towel but not too much that I have pain. Rhiannon worked on my knee and hip also which have been painful since the fall also, my left side needed attention too as it has tightened as if I stand it takes all my weight. Mum did ultrasound on my ankle and knee while Rhiannon was working on the other areas. She also put heat on my neck to give it some relief. We are both excited about my rollator coming which is supposed to be today sometime but as yet it hasn't been delivered. I will not be able to do too much though because of my injury so that is extremely disappointing. Rhiannon is such a wonderful and caring physiotherapist and if it wasn't for her then I would not be getting my rollator because the team in Sydney did not think of using something like that to try to give me a little mobility that would assist me to balance also.

I am not feeling very well again, it is probably because I am due for another dose of Demazin, that is what Mum is using to try to relieve my cold, I am actually beginning to feel really nauseous again, when you have a cold your nose often drains so that is probably what is upsetting my stomach.

Gavin went to Melbourne on the weekend and he met up with Elisa a girl who had contacted him after reading my book, she works at Angus and Robertson but more importantly she is a medical student and in one year she will be a doctor, she told Gavin that after reading my book that it had changed the way she looks at her work, she was so inspired that she is trying to get extra copies of my book sent to Melbourne and she is asking her lecturer to recommend that all the medical students read it. I think that she is going to be a fantastic doctor because she will take the time to think about how her patients are feeling. Wow, this is amazing, imagine my story making a difference to the medical profession.

On these days when I may get a little down because of pain, frustration or illness it is hearing news like this that gets me back on track and reminds me of my dream to make a difference, raise awareness, inspire others and give all of myself to my cause.

Sunday, September 12, 2010


11th and 12th September 2010

My ankle ballooned during the night, it felt stiff and pain wise it was definitely a nine out of ten, I cried it was not fair to go to Sydney for tests and appointments and end up with an injury that will obviously now stop me from using my rollator when it arrives next week, I can't even put weight on it, it is just so unfair.

Despite feeling extraordinarily tired and still in pain I was excited because Dad was driving from Canberra to pick us up that morning. The best part was that he had arranged for Jarrett to be picked up and dropped home from running training so he could leave earlier which meant the sooner we left Sydney the sooner we would be home and for me this time Sydney had been absolutely horrific. When Dad arrived he packed the car and we went for a cup of hot chocolate so he could have a break before driving again. The traffic was not too congested and amazingly there were no hold ups in the M5 tunnel. We made good time, we stopped at Marulan for a drink and toilet break before arriving home just in time for a later lunch. On the way I had watched two DVD's in the car, it tends to make trip that little bit more interesting.

Nalani and Jarrett were so glad that Mum and I were home and we both got ginormous hugs then it was time to unpack, I often think that unpacking takes much longer packing. I needed to rest because the pain in my ankle had increased and also my knee was clicking and swollen. After my rest I wanted to help prepare the vegetable slice for dinner, I love cracking the eggs then beating them with the oil and self raising flour, Mum grates the carrots, zucchini and onion and then I mix them into my egg mixture and lastly the cheese is mixed in. Normally I eat quite a lot of vegetable slice but my stomach did not seem to handle it last night, I could only tolerate two small slices.

The Wests Tigers were playing the Roosters and we sat as a family to cheer my team on, I even got Mum to get my signed Tigers flag out so I could wave it, just like been at a game. When Roosters took a penalty kick to lead 2-0, I was not too worried and then the Tigers came storming back to lead 10-2 at half time, a decent lead but they needed to put more points on the board and that is just what they did. However, the Roosters made a comeback and in the last ten minutes it was any one's game really. When the score was 15-14 with the Tigers winning and only minutes left I felt we had it won, but then tragedy struck, my favourite player, Benji Marshall left the field, limping with a knee injury and as all the interchange players had been used the Tigers had to hold on to that narrow lead with just twelve men on the field. My heart was thumping and my throat was dry, I had my fingers and toes crossed and then the Roosters scored a field goal to lock the scores at fifteen all meaning that they would play golden point extra time, meaning they would continue playing until one team scored. We had our chances but were unlucky, so did the Roosters but from a move that I think should have brought about a penalty the Roosters scored a try to beat the Tigers 19-15. It did not seem fair and to have Benji injured was devastating, I am now hoping that St George beat Manly because it then means that Tigers will play Raiders next week, what a game that will be.

I went to bed tired, sore and upset, my whole right leg gave me problems during the night and by morning time I felt like I had not slept a wink. We had running training at the AIS today, I was delighted to see that the sun was shinning , it was a marvellous Spring day and a lovely day for a walk while Jarrett went for his hour long run. On our walk we discovered some tiny baby bunnies peaking their heads out of their burrows, there were blossoms of pink, purple and white and birds singing delightfully, the walk revived my spirits however with every bump that we went over my knee and ankle throbbed in pain.

The good news was that Jarrett did not have any asthma problems today, perhaps the weather assisted him, he did not have any problems on the Saturday either, maybe his new asthma medication is working for him now. He has to go to the paediatrician on Wednesday to find out all his results from his lung function tests, I hope they are good for him and he can continue to excel in his running.

We have some camellia's in our garden and they have been dropping their old flowers off, Dad was doing some gardening and I wanted to be in the sunshine because the sun reminds me of warmth, happiness and love, so Dad got a special tool that is like a hand as it can grab objects and I sat in my wheelchair and picked up the dead flowers and placed them in a bin. I was absolutely exhausted when I was finished and I must have twisted strangely because I ended up with a painful neck.

I rested for a while and watched a movie called Confessions of a Shop-a-holic with Nalani before cooking some piklets to have for dessert tonight with jam and cream. My ankle, knee, hip and neck are extremely painful at the moment, I have a headache behind my right eye and feel a little nauseous, perhaps I have overdone it today, so I think I will finish this and have another rest because I have school tomorrow.

During the coming week I should receive some more results and information about my return to Sydney, going every month is going to be difficult, it will make it harder to settle into school work and I hope that I will not miss any of the exciting activities that are planned for Term 4.

'I think we all imagine what sort of life we would like to live but we don't always strive to achieve it because we think we have all the time in the world, don't put it off, you don't know what is just around the corner, make the life you imagine a reality'

Friday, September 10, 2010


9th and 10th September 2010

I spent my night waking with merciless pain in my right ankle which had been injured and it spread up into my right knee which in turn became stuck, luckily Mum and I are sharing the same bed so it was easy for her to help me. I was so exhausted from my busy days of appointments and I wished that I could sleep but alas, it was obviously not meant to be.

Thursday I had a morning appointment in the Neurophsyiology Department, it was a study that helped evaluate weakness of upper and lower limbs, through impulse conduction through the somatosensory pathways. An electrical stimulus was applied to my tibial nerve which is in my leg near my ankle and it was increased gradually to a point that my foot twitched, it felt really weird, I guess I could describe it like lots of mosquitoes biting me at once. The same test was done on my median nerve which is in my wrist, the same feeling occurred and my hand twitched. What this test showed to the neurologist was that manually she was unable to get any stimulation from my ankle but with the electrical stimulation it showed a reaction which was good so my neuropathy is not as severe as what she thought it originally to be. Neuropathy often occurs during and after chemotherapy treatment especially when the drug vincristine is used, it can actually improve in time.

My next appointment was with the Endocrinologist, she was not happy with blood test results which came back indicating that there is a problem with my hormones. She feels that I need to have estrogen hormone patches and she said sooner rather than later because my ovaries are starting to shrivel. She is also concerned about my bone density, she wants me to have a bone density test but would prefer me to have it done at Westmead where a person she says is the best does it. There is also an issue about my growth, I have not grown in the last six months and my weight has not increased it has been decreasing.

The appointment I had been so excited about all day was my review with my Radiation Doctor, if you have read my book, I described him as an extremely friendly, caring doctor who talked to me about what was happening, I referred to him as being like Santa Claus. As I was waiting to see him, members of the Coogee Team who had been by my side throughout my radiotherapy treatment came and saw me, they said that I still had the most beautiful smile and said it always lit up the room. I felt quite teary seeing them but it was tears of joy because they had been special to me. Finally the moment I had eagerly anticipated occurred, my doctor came into the examination room with the warmest smile, he came straight to me and gave me an enormous, comforting hug. Then he spoke to me about what had been happening over the past ten months since I have last seen him. He told me that my fatigue was a result of the radiation and that it could continue for an extended period of time, he apologised that my hair had come back so patchy and said it does not always happen but unfortunately it had to me, another less common side effect, he even held out his hand and told me I could hit him, but I chose not to and told him I'd prefer to blame it on the chemotherapy because I detested having it. He told me that there is no large tumour mass in my cerebellum however the metastatic tumour remains, reduced in size from what I had originally presented with but it appears stable at the present time. There are some other enhancements in the brain but their significance is unknown that this stage. He mentioned the areas on my spine and thought the Neurosurgeon should look at those areas as a precaution. The hormone and growth problems are also side effects from the radiation, it seems that chemotherapy has more side effects while you are on it but it is the radiation that has the later and often more devastating effects. At the end of my appointment I was given another humongous hug and kiss and he told me to keep fighting hard, he also said he wanted to see me again in six months time. When I see my Radiation doctor he gives me more confidence and hope and I can visualise that rainbow when I am around him.

My day had been busy, exhausting and I had received the upsetting news from the Endocrinologist, more medication and procedures to endure. My mood turned to excitement again though because we were having dinner with Tess, Gavin, Paul and Carlos, the extraordinary people who made my dream of my book become a reality. We went to the Spanish Fly at the Spot. It is a tapas restaurant so you order numerous dishes and share. Some of the dishes did not appeal to me, but looked delicious but I did have some John Dory in a parmasen cheese batter, Beetroot Dip with mini toast bread and stuffed zucchini flower, I ended my dinner with the perfect dessert, profiteroles and they were scrumptious. Being away from the hospital and all the tests and poking and prodding was marvellous and the company was fantastic, I had some difficulties hearing as the venue was quite noisy, so I had a lot of feed back in my hearing aid but just been with these special people lifted my spirits immensely. I came home tired but contented until my food went through me, which seems to happen if I have just slightly richer food. It was so funny because Tess and Gavin were fighting over me to give me hugs, which I truly needed that night so I felt very spoilt.

It rained overnight and the Sydney skies this morning were grey and seemed to threaten to open up and let the rain fall again however blue skies took over and the sun shone on our last full day in Sydney. I had my Neuropsychology Review this morning and whilst we were waiting we received a call to say my Oncologist wanted to see me in the afternoon to let me know what was happening. My neurosphychologist is a really gentle and caring person, we discussed school and home life what I feel I am achieving and areas of concern I have. After she took notes on all that Mum and I told her, she said we could have a break, go for a hot chocolate and come back because she wanted to run a few tests on me. First of all I had to cross off all the number threes on a double page that had other numbers and letters, on a sheet of paper there was a start and finish point, I had to draw a line between numbers, it was like dot to dot but done differently, after the numbers I was given the alphabet to do, the next one was numbers representing letters like 1-a, 2-b, 3-c and they had to be completed like a dot to dot also, then I had to trace a dotted line and when you got to the circle I had to go through it and I was relieved that it could be a little wonky because my right hand is not the best at tracing, next I had to write my name and address and then I did one that was like a crack the code but using numbers and symbols, then I was given a letter and I had to come up with a word but it could not be a name or place, my final task was to come up with a list of boys names and then animal names, it was fatiguing but I felt I did reasonably well. When she was pushing me back into the waiting room, I was surprised and delighted to see Gavin sitting beside Mum in the waiting room with a huge smile on his face. He had been at the hospital attending an appointment and wanted to catch up with me one last time and give me one last splendiferous hug.

He walked us down to my physiotherapy appointment which was next on my list for today and sneaked in one last hug. If it had not been for him and Tess I think Mum and I would have gone crazy this week, it has been such a difficult and exhausting week for both of us. I was a little worried about physiotherapy because my ankle was still painful and to weight bear was excruciating. However my physiotherapist used the ultrasound on it to try to relieve it, she felt it was an ankle sprain with soft tissue damage. She also measured my muscles and discovered as she suspected that there was more wastage in my right leg than my left and now with this injury there will probably be some more damage. She has set me a goal of trying to weight bear on my good days as much as possible. I know that with my rollator that Rhiannon has organised, that should be arriving next week, it will make a world of difference for my mobility.

From physiotherapy to visit my Oncologist who expressed his concern again that he felt I had deteriorated in the last six months and they want to see me now every month. I was also told to not take the tablets that were given to me by the pain clinic any longer as they are concerned that I could have severe side effects from them because of my hormone issues. So I am now back to square one with my pain relief, I have to take panadol four times a day, use heat and dencorub to try to relieve pain that occurs. They are going to have a team meeting next week and try to work out where to go from now.

After my appointment, Mum and I decided to have some time to ourselves and go to East Gardens to look around the shops and get away from the hospital. Been distracted by the shops helped me to not think about having to come back again so soon. Can you believe this, when we were walking through Myer, they were unpacking Christmas decorations!

My time here has brought new questions, some good news, so bad news, my concern is not about a return of my cerebellum tumour now, it is of what on earth is going on with my body and how and if it can be fixed, the doctors seem a little perplexed by it so that worries me.

'Life is so full of twists and turns, but I am always keeping my sights on that rainbow'

Wednesday, September 8, 2010


8th September 2010

On a day that I thought I could catch my breath and rest because of my lumbar puncture I soon discovered that many more appointments had been arranged for me. It all started when I went to be signed into the ward for my lumbar puncture and was told that I had to go to SEALS to have bloods taken for Endocrine. They had to take three vials, a small one, a slightly larger one and then a really large one that seemed to take forever to fill with my blood.

We returned to the Ward where all my observations were taken, I was surprised when my blood pressure was 93/58 it is normally lower than that, my temperature was fine and then the nurses were asked to get my blood sugar levels with a finger prick, the first reading was 2.3 which they said was low and then it was 3.2 which was a little better. They were planning on putting me on some fluids after my lumbar puncture to try to bring the levels back up.

I then had a visit from my Social Worker and she had brought a doctor with her who was part of her team, they asked me how I was feeling, talked about how I was going, if I had any concerns and what makes me happy and sad. Sometimes I feel like people don't think I try hard enough but every single day, I am determined, push through pain and always want to do everything I can to help others constantly. I try to smile even though I am suffering in pain or feeling ill that is what is important because even though I have been given this journey I am determined to have a good outcome. Some days I do feel sad, I miss what my life used to be like, I wish I could do everything I used to be able to do, I often set myself really difficult goals because I am so determined, my greatest wish is that others don't have to suffer the way I have from my tumour, the surgery and treatment, there has to be a better treatment with less side effects and a cure for everyone.

The anesthetist came to visit and asked the usual questions, like have I ever had a reaction from the anesthetic, when I last ate, whether I liked having gas or just a canula put in and how I usually come out of an anesthetic. I found out that I was the first person into the theatre which would be at 2pm. The time came and I was rolled into theatre with Mum beside me as usual and Theodore lying in the bed beside me, not even Mum can stay with during the procedure but Theodore can. The anesthetist put some strawberry lip smacker on the mask to try to make the smell nicer, normally it smells like really odorous shoes or socks, the scent of the lip smacker disappeared rapidly and the smelly shoes smell then took over. When I woke up in recovery I smiled at the nurse as usual, that is how I recover from an anesthetic. One of the theatre nurses told Mum that I was even smiling during the procedures. I had some slight pain following the lumbar puncture but I lay still in the bed and hoped that it would improve, which it did. To my surprise I did not have to have extra fluids as was first thought because of my blood sugar levels, in my serum blood tests ithe reading had been 4.6 and that is fine.

While I was waiting to be able to go home I had a visit from the dietician and she has recommended that I put a powder called Polyjoule in my drinks as it is a source of energy that builds up the body, apparently many athletes use it to assist with there performance. She also wants me to add more fats into my diet which will make me put on weight.

Then my neurologist came to visit me and she did her normal testing on me she is happy with me but was hoping for more progress, so she wants to do a test on me to check the extent of my neuropathy apparently it is a little like the EEG one. Speaking of EEG, the results were normal, what fantastic news to hear, she does not know why I have had the seizures, or even if they are seizures but she does not know what else they could be. I had to stand and with her help try to take some steps but because of my ankle injury I could not walk at all.

The Endocrine team were supposed to see me but could not make it so I am seeing them tomorrow on C2 North at 2pm, I also have my radiation review tomorrow, so it has also become another busy day for me. I was then discharged from hospital my blood pressure on discharge was back to quite low at 79/53. I am feeling quite fatigued obviously some of that would be from the anesthetic but this has certainly been an extremely demanding trip to Sydney.

'Determination is the key to overcoming the obstacles that block our path in our journey of life'

Tuesday, September 7, 2010


7th September 2010

Last night a cool change passed through Sydney, when I woke throughout the night I actually felt rather chilly, in Canberra I have the comfort of my electric blanket and heating but here there was only an extra blanket we could throw on the bed.

Thick clouds filled the grey morning skies in Sydney however the sun kept attempting to peep through those fast moving clouds and eventually won its way and shone throughout the day, but a Southerly wind kept the temperatures down and you required a jumper when you ventured out.

Today can only be described as hectic, my day began before 10.00 and did not finish until 5.45pm with virtually no time even for a toilet break let alone food or drink. My first appointment was Oncology Clinic, firstly I was weighed and measured, my weight was 28.15kg and my height was 147.5cm which is below average for my age. We then waited in the waiting room until we were called in by the Oncologists Registrar, who asked me what had been happening over the past three months. I told her about my pain, my knee problems, my seizures, my hearing aid, feeling fatigued at school, about getting a rollator soon to help my mobility and generally how I was feeling. She took my blood pressure and it was normal for me which is low and then she checked my pulse which she said was a little low. Then my Oncologist came in and discussed some things and told me he wants to see me again in a months time because he was concerned that my health had gone backwards in the last six months.

My next appointment was a Physiotherapy review, she asked me lots of questions and checked the range of my left and right leg, my left certainly has full range however my right one does not and she noted that there is far more muscle wastage. I told her all about my rollator, she was extremely excited that Rhiannon had organised it and felt it would be a definite move forwards in my rehabilitation. She got one of the rollators that they have in Physiotherapy, it was not like the one that I am getting, it only had two small wheels on the front and then just like chair legs on the back but I was able to use it. My steps were not like normal walking but by using it I was more mobile than being in my wheelchair, I did find however that my knee and ankle became quite painful and I had to have rests. She then got me between the walking bars and I did some forward and backwards steps with assistance. She decided that she wanted me to try a step and we told her I had not done that as it was too difficult but she felt confident that I would be able to do it. I stepped over with my left leg first but coming back stepping down on my right, my right leg gave way, I fell and injured my right ankle, it swelled up and I had to have ice on it and then a tubular bandage, it appears that I have done some tissue damage to it. It is extremely painful still tonight and swollen, this is a little backwards step but hopefully it will not hinder my progress to severely.

To my delight though she had organised for the Doctor and CNC Nurse from the Pain Clinic to see me whilst I was with her. They asked me questions, asked Mum questions, examined me and then told me that the pain I am experiencing is muscular but originated from nerve damage caused by the Chemotherapy, the Vincristine I was on, can sometimes cause nerve damage. Now because my muscles are so weak it is likely that I will have injuries as I try to become a little mobile and these will set me back but with medication that will be long term I should be able to over time get some relief from the pain that I am experiencing so frequently. The medication I have been put on is called Gabepentin, it is used in the treatment of neuropathic pain which is a severe type of pain caused by damage to the nerves. I initially have to take one tablet at night for three days, then one morning and night or three days and then one tablet three times daily for at least six months but it could most likely be for longer. There are quite a few mild side effects as well as some serious side effects and I have to watch for them as it could mean these capsules are not suitable for me, hopefully with my history of having rare side effects to medication that this does not occur on this medication. I have also being put on another tablet called Allegron, which is a relaxant, both of these medications can make you extremely drowsy, so they are hoping that it will allow me to get some much deserved and needed sleep, which in turn will help my body repair itself. However the medication takes a while before it kicks in about six to eight weeks so in the meantime I have to take Panadol four times a day, not just when I have pain. Lucky that this appointment was organised for me as if I had to wait until our next visit to Sydney then I would not have had any sort of relief until next year.

After a quick drink and toilet break it was then off to my Occupational Therapy Review, I was expecting to have to undergo more testing which I really was not feeling up to as I was exhausted already and in dreadful pain with my ankle. When my Occupational Therapist came out she told me we were doing something very special - cooking, that's right we were making Chocolate Chip Chunky Cookies. I love cooking and this was a wonderful surprise and certainly beat been tested. I cracked the egg, worked out the amount of butter required, stirred the mixture and then had to use my hands to combine it. I then made the cookies and put them on the tray, they were then placed in the oven to cook but I did not get to see the finished product because I had to go for my MRI appointment, my Occupational Therapist told me she would leave a packet of them at Reception for me to collect tomorrow. While I was cooking she was asking Mum and I some questions and taking notes, mostly about my school hours and what I do.

We made our way from Occupational Therapy to the MRI, I was actually looking forward to lying on the bed, closing my eyes and resting, it had been such a full on day and it had definitely taken a huge toll on me. The nurse put the canula in and she used one that they use for babies because my arm is so tiny. The earplugs were placed in my ears, the head surround clamped in and a warm blanket placed on top of me. Theodore was there with and so was Mum who had to wear ear plugs also. I had to take out my earrings which felt really strange because I have not had them out that long since having them pierced in June. The door closed and the MRI commenced, my eyes closed and stay closed, my body was as still as a statue, my ankle throbbed but at least I was resting it. They came to put the Gadolinium, which is the contrast through the canula, I thought it must have been nearly finished because usually that is put in in the last fifteen minutes of the scan but this time they put it in half way through. It was all over after an hour and a half, the canula was removed and we went to the reception area to wait for our Disk copy of the scan, however they had problems with it, so we have to collect it tomorrow morning before I am admitted to hospital for my Lumbar Puncture.

Tomorrow will be a long day, not with lots of appointments but just waiting around in hospital for the Lumbar Puncture. My Neurologist is going to visit me on the ward and go over my EEG results and do her examination of me, at least that will use up some of the time. I am so exhausted tonight and I am hoping that I will be able to sleep, even though I am not concerned about my Lumbar Puncture, I still get a little nervous.