Tuesday, August 31, 2010


30th and 31st August 2010

The marvellous sunshine we had on the weekend continued to grace our skies on Monday as Mum wheeled me to school. It was spectacular to not feel so cold going to school, although I still had a heat pack as I had dreadful pain in my right leg which had tormented me during the night and I was hoping the heat would assist the pain. My first lesson for the day was Chapel and we learnt all about Ruth and her faith, again we were reminded that sometimes in our lives our faith is tested but we should know that God is always there for us. I know this through my own journey, I have questioned God but then I now know the answer and that was that my journey was given to me so I could help others, it is not an easy journey at all and there are days that I truly wish I did not have such an immense burden but this is my path and I am determined to make a difference.

Following Chapel it was my favourite lesson and that was PE, it was fantastic to be out on the oval enjoying the rich Vitamin D that the sun provides us. I spent the lesson throwing the javelin, it is challenging to do in a wheelchair but I managed and each time I seemed to be able to throw it a little further. I am so excited about the Athletics Carnival on Friday, it is on these occasions when I am able to achieve something that I thrive. I may not be able to do the field events in the same way that I was able to before my Tumour but through being determined I have been able to overcome obstacles to do it in my own unique way.

Then I had Integrated Studies and we learnt about groundwater, how it is found in wetlands and different things that can effect it. Mum took the notes for me because I just could not keep up, my hand simply does not write fast enough. We then came home, I had my warm and refreshing cup of tea, rested for a while and then finished off my Father's Day card for Dad.

Before I knew it, it was time to return to school in the afternoon for double English, I took my computer with me thinking we would have to do a writing task but I was then surprised to discover that we had to draw a character from our novel, draw clothes on them that were described in the book and then write an evaluation about the use and description of clothing by the author. I attempted to draw but my hand became so fatigued even swapping from left to right so Mum lightly sketched it and I went over it. We also had to discuss the personality traits of the character in a group, even though I have my hearing aid, when I am placed in this situation with many people talking, I only hear some of the words that are been said.

Something very exciting from school on Monday is that I was given five diary stars, diary stars are given to you by teachers for good work, good behaviour, signed diaries, handing in work and for good work ethics. When you get four diary stars that then earns you a House Point Card, they are worth ten points for your House, my House is Guraguma, at the end of the year the House with the most cards wins a House trophy. It is not just House Point cards that earn points it is also things like the Athletics Carnival, Cross Country and Swimming Carnival. I hope I can earn lots of points for Guraguma at the Athletics Carnival.

In the afternoon Jarrett and I had a doctors appointment, I had to get a blood test form ready for when I go to Sydney next week, my doctor added a couple of extra tests that he wanted checked and he will discuss the results with me when we come back from Sydney. Jarrett saw him to talk about his asthma attack, the doctor was extremely concerned about him and immediately contacted a paediatrician who specialises in asthma, the paediatrician thought it was urgent that he saw him as soon as possible and he was given an appointment for Wednesday. Jarrett may have to have a lung function tests and maybe some other tests also, he may also need his medication adjusted. I hope that everything will be okay for him, he needs his asthma controlled because he is such a magnificent runner and asthma should not stop him from doing something he is really talented at.

I did some knitting at night and went to bed with pain all along my right side that caused me to wake often throughout the night. I continue to wish that one night I would have a decent night sleep and wake up feeling wonderfully refreshed and not in pain.

This morning, the last day of Winter, the sun was luminous in the crystal clear blue sky, I did not have school today so I was able to rest in bed a little longer than when I have school. I did some knitting, played three games of Upwords and did some reading. In the afternoon it was running training and for the first time in ages, I was able to go outside because it was not too cold and I practised my discus and shot put, I am delighted to say that I threw the discus 4.31m and the shot put 1.72m that is an improvement on my weekend throws. The sun then began to go down and I had to sit back in the car until Jarrett was finished his training.

We still have not received a schedule of appointments for Sydney, we had to book some accommodation and were lucky enough that there was a room available at a place within walking distance to the Hospital. We had a telephone call from the Occupational Therapist from Canberra who is going to come and visit when we come back from Sydney to see how they can assist me at home and school.
Today I have included a photograph that was taken by Anna who is over in Greece at the moment, it is a picture of my book, which is in the right hand corner at the Acropolis, how splediferous, my book travelling overseas to one of the most famous attractions!

Sunday, August 29, 2010


28th and 29th August 2010

Spring is in the air in Canberra and as the glorious rays of radiant sunlight streamed into our lives this weekend, it put a bright smile on my face. Even though I may have pain and discomfort in my days, the sun seems to give you energy to fight harder through the tough times.

Spring means blossoms, colour and new beginnings, we had running training at the AIS on Saturday morning and just to remind us that it is almost Spring Jarrett had a track session. While Jarrett was doing his 800m repetitions for training, I took the opportunity to do some training of my own. I took my 2kg shot put with me and after doing 100m pushing myself in my wheelchair, I did some upper body stretches and then went to the shot put area to get in some practise before our Athletics Carnival on Friday. I focused and ignored the pain I was feeling and threw, I thought I had done well, I threw for a while until my arm became too tired. We measured and I had thrown 1.6m, I was proud of that achievement.

When we came home I helped Nalani and Jarrett with some of their homework, helping them come up on design ideas. Then I worked on my own design for my painting that I am doing for the new Ronald McDonald House in Canberra, it is my final design and I am going to transfer it onto the canvas ready to paint when I come back from Sydney. We then watched The Wizards of Waverly Place the Movie on DVD, it was a light, family movie that I really enjoyed. Resting watching a movie always helps me to recover so that I can do some more, so after the movie I played Upwords twice, I had missed playing it when we were in Brisbane.

My right arm became extremely painful in the late afternoon and I had to sit with a heat pack on it, thank goodness it gave me some relief because I was so worried that my shot put throwing had aggravated something. I was exhausted by bedtime but found my knee and ankle were swollen again and they woke me throughout the night again.

The sun was up bright and early this morning and so were we, Jarrett had running training again, today was a long run from the AIS. Whilst Jarrett was on his run I went and practised shot put and discus, for discus I throw a 750 gram one. I did my warm up again, because even if you are in a wheelchair it is still important to warm your muscles up before attempting any sport. Today my air was still feeling a little sore from yesterday but I did not care, I wanted to throw, I am sick of having pain stop me from doing what I want to do. I threw the discus first and my longest throw measured 4.2m, then I threw the shot put and did better than yesterday, I threw 1.7m. To anyone that does not have any form of disability these distances probably don't sound very long but to me they are magnificent throws because I am throwing them, sitting in a wheelchair without the benefit of my legs.

We saw Dianne and Lachie at the AIS, Dianne gave me some wonderful scrap booking materials from her very kind friend Linda and also a beautiful crocheted poncho that was in rainbow wool that a lady at her Dad's Nursing Home had made especially for me. I truly appreciate gifts that are from the heart and handmade with love.

Jarrett went for a run for over an hour today and I was relieved that he did not have any problems with his asthma, Mum had given the Coach his ventolin puffer just in case anything happened. Yesterday when he did the track work, he experienced some slight chest tightness again when he pushed extra hard, I think he is still recovering from his severe attack last weekend. Jarrett was smiling today because I think he too was relieved not to have had anything go wrong today.

We came home from training and my arm was quite painful, I did not want to say anything to Mum but she guessed, Mums are extremely good at that, they seem to know some things without you even telling them. I had heat and panadol to try to relieve it, at first it seemed to get worse but then it improved. I sat quietly and sorted through all the scrap booking materials and as I sorted them out, a multitude of creative ideas were flowing through my mind.

In the afternoon we met Tass, Gloria and Rosie for afternoon tea at Federation Square, Tass took another box of books from me, he is a prolific seller of my books and I am so grateful that he has assisted me to spread my story around Canberra, raising awareness about Brain Tumours and helping me to make a difference. After giving him a box of books and sending out an online order today, I now only have twenty five books remaining. We enjoyed our afternoon chatting and laughing over coffee and hot chocolate.

After a lovely warm, refreshing shower I sat down and began a special creative task for my Dad, I am making him a very special Fathers Day card using many of my new scrap booking materials. I hope he will like it, as I said before I think gifts that are made by hand and come from the heart with love are the very best.

I have school tomorrow until recess and then after lunch, again on Wednesday and then Friday is the athletics carnival. I have read the forecast and it now says that it will be 1 to 15 degrees on Friday with an 80% chance of rain. I hope that rain will not appear until after the carnival, it means so much to me to be able to participate in it.

Again I would like to thank everyone who has been leaving me beautiful, encouraging comments, lovely quotes and sharing their lives with me, I am so blessed that you have taken the time to share my journey with me and I never feel alone.

'As long as we have memories yesterday remains, as long as we have hope tomorrow awaits and as long as we have love today is beautiful'

Friday, August 27, 2010


26th and 27th August 2010

I think I have heard a saying that says that home is where the heart is, well even though I had enjoyed being away from the arctic Canberra climate, I was enthusiastic about heading home to my own home and especially my own bed.

We woke to an overcast morning in Redcliffe but there were odd patches of blue peeping through, with a promise of a clearer day than what we had experienced on the previous two days. After playing a game of cards with Nalani and Jarrett while Dad packed the car and Mum cleaned the unit, we headed off to Scarborough to hand in our keys. There was a winding walking path along the waterfront, so we decided to take a walk along it, to fill our lungs with the fresh, salt air. When we were walking we actually saw an unusual sight, it was a lady and she was pushing a pram, that is not so unusual but what was, was that she did not have a baby in it, it was an obviously extremely spoilt little dog, who actually almost appeared to be smiling, enjoying the ride. Jarrett could not help himself and decided to run a little along the beach, ending up with a large amount of sand in his shoes which he had to tip out. The sand at Redcliffe and Scarborough is not delicate and white, it is actually quite a dark colour and it is also rather course. When we turned around to come back we were walking near some trees and out of nowhere a magpie came swooping down and it went straight for Jarrett, its wing roughly brushing the back of his neck, then again it came at him, this time hitting his head near his ear, there was a red mark, fortunately it did not draw blood. Jarrett put his hood of his jacket up and very hesitantly walked towards where we had parked the car. It was strange that the magpie had just decided to have him as a target and was very persistent.

After our walk we decided to have some morning tea back in Redcliffe, where the sun was beginning to push its way through the clouds, typical on the day we were leaving the weather had improved. As we drove towards the airport the skies were becoming clearer and the air was warm and comforting. At the airport we went for a walk after checking our bags in, Jarrett found one of the claw games and declared that he could win something on it, it had lots of little soft toys in it. He had a turn and with skill he managed to win a pink octopus which he gave to Nalani, he then had another turn, he had his eye on a teddy bear for me, again with great skill, he won it, he decided to go for a hat trick and he won himself a tiger. We had some lunch and then it was time to head to our gate for departure. It was then time to board, we had seats near the wings just like when we went there, we had a delay on the runway, finally taking off ten minutes late.

The time on the flight went fairly quickly and before we knew it they were announcing that they were descending into Canberra. I could see the familiar sight of Black Mountain Tower and felt so pleased to be back home even though I had enjoyed our time away. We left the plane last as that is what happens when you have a wheelchair, collected our bags and headed out to the taxi rank. My breath was almost taken away by a blast of icy air and sleet falling gently from the heavy snow clouds in the sky. My bones began to ache immediately and I felt almost like I had icicles forming on my nose. We arrived home and Tinkerbelle was so happy to see me, she could not stop rubbing up against me, then cuddled me and purred loudly. We unpacked, had some dinner and I went to bed exhausted, it had been a long day for me.

I woke several times throughout the night again with pain, stiffness and Cosima licking me on the head. I did not have school today which I was pleased about because I was still quite fatigued from travelling. Mum did housework and then we had to go to sign our tax return. It was absolutely freezing outside today, there were strong gusty winds, rain and sleet, what a welcome home, I hope that the weather improves because I have discovered that as soon as we came home to the colder climate my pain became more intense, I even had a headache, I am not sure whether it was from the day before or the cold weather. Rhiannon came over at 12.30pm to meet the man from Mobility Matters who was going to show us a couple of rollators but he had made an error with appointments and we had to postpone, Rhiannon organised for him to meet us at my physiotherapy appointment later in the afternoon. I was able to play Upwords again today, I had missed playing that while we were away so it was fantastic to play today. The day raced by, it was time to go to physiotherapy, Nalani had an appointment also so she was with us. The man from Mobility Matters met us and I was able to try out two rollators, it was amazing, I was actually able to use it to walk, I still felt very off balanced but was able to use it to support myself. He told us how ones with larger wheels are more stable and that one was lighter weight. They have brakes and even a seat on them so that if you get fatigued when you are walking you can sit down and have a rest. I now have to think about it over the weekend and let Rhiannon know next week which one I preferred using. Rhiannon then loosened my muscles, my hamstrings felt so tight, it was rather painful, instead of crying though I laughed, laughter is the best medicine! Rhiannon is so wonderful, she has helped me so much in my journey, I feel so lucky to have her as my physiotherapist. Nalani then had her appointment, she has worked determinedly on her exercises and is building all her muscles ready for her surgery on 17th September. She has some more difficult exercises to do and has to see Rhiannon again in two weeks that will be the week before her surgery, if Nalani can strengthen all her muscles now it will help her have a quicker recovery after surgery and that is important.

I helped make vegetable slice for dinner tonight, I love making and eating it. Then I decided to do some knitting, I am making little squares to make a blanket for Theodore, the colours I have used are red and green, they are Christmas colours and Theodore is a Myer Christmas Bear, I am hoping to have it all finished to give to Theodore for Christmas. My right hand has become painful and difficult to use again, I think it is from the cold weather.

'I am grateful for all the difficulties I face, they have helped me to become a stronger person and to face my life with a positive attitude'

Wednesday, August 25, 2010


24th and 25th August 2010

With the Cross Country Championships over for another year, we had a couple of days to spend time as a family to enjoy the sunshine of Queensland, except the weather has not been delightful and sunny, it has been overcast, rather chilly, in fact not too different from our own Canberra weather.

Yesterday we had organised to meet up with Nana and Pop at Northlakes, where we spent some time shopping and having a warming hot chocolate together. They then had to drive back home to the Sunshine Coast before all the afternoon traffic. It was really terrific to see them this week!

We went back to our unit where I relaxed and played some solitaire before having a scrumptious barbecue dinner. The rain began to fall gently from the cloudy sky as I lay in bed in pain trying to fall to sleep. Even though the weather is warmer here in Queensland unfortunately I have still been experiencing pain and swelling.

Today was grey and gloomy with powerful winds, definitely not a day for swimming or going to the beach, Jarrett wanted to go for a run, we went down to Settlement Cove so he could run along the water front while we went for a walk. Since we have been here I have learnt that Redcliffe was Queensland's first settlement site, before European settlement in 1824 this area was inhabited by Aborigines who found food was plentiful here. The settlement of Redcliffe which was named because of its distinctive red cliff faces had a crew and convicts land here on the 13th of September 1824, however in 1825 the settlement was deserted until the 1860's when the land was used for dairying, sugarcane, wheat, cotton, beef, honey, oranges and potatoes. In the 1880's Redcliffe became popular as a sea side resort as it was compared to many of the holiday destinations the settlers were used to in England. Today it remains popular as a holiday venue for many families.

As it was not really outside weather, we took a drive to DFO at Brisbane Airport, it is all on one level and very spacious with many shops to look at. We found quite a few bargains and enjoyed lunch there before heading back to Redcliffe where we had to pack ready for our flight back to bitter cold Canberra tomorrow.

Our time here has been magnificent, exciting and a little disappointing, I will miss being here but at the same time I am so looking forward to getting home and giving Tinkerbelle a humungous cuddle!

I was so excited to hear on the news that Benji Marshall has been announced as an Ambassador for the Oncology Children's Foundation and that he has also revealed that he is setting up his own program to raise funds for the cause. When I met him he was so genuine and really took the time to ask me questions, then when he wrote to me for my book launch and told me I was his hero, I was so touched and it really meant the world to me that someone as talented and famous as him would say that about me. I wonder if reading my book as well as spending time with other children with cancer is what has made him do such an incredible thing. He is my hero now in more ways than one, he has truly shown the spirit of humanity as well as been the best football player in rugby league!

Monday, August 23, 2010


23rd August 2010

So much for being in the Sunshine State, today was another bleak and showery day up here. We had to be up early to get to the Course for Jarrett to run at 9.10am, the skies were grey and thick clouds covered the sky, although the air was not as brisk as it normally is in Canberra, we had to wear jumpers.

Jarrett was feeling well today and perhaps his asthma attack was brought on by allergies which he often suffers from in Canberra but mainly from mid September to November however being in a different State the climate is so variable and in Brisbane their Spring seems to begin much earlier than it does in Canberra, so perhaps he should have taken some antihistamines a week prior to coming here. We will never know however whether it would have made a difference because you can't turn back time and change the past, even though I wish I could many times over. Jarrett was the fourth runner in the relay team, the first runner was Riley and he took off well running in fifth place, then Lachie took over he ran extremely well and brought the team up to fourth place, Ruben ran next, even though he ran well he came in in sixth place, Jarrett then flew off and made tones of ground, the next runner was another Riley and he ran strong but they still ended up sixth. It was a marvellous effort from all of them and Jarrett had a huge smile on his face because he ran the fastest time out of all the fourth runners, he needed a boost to his confidence after what happened on Saturday. He will have a couple of days off training now and then next Saturday will begin his track season training and I know that he is going to achieve incredible results.

The rain fell on and off lightly and then more fiercely throughout the morning which made it quite cold at first but later on it became extremely muggy. The event came to an end with the Closing Ceremony and no matter where any of the runners came they should be exceedingly proud of the fact that they represented their State and achieved their best. I am hoping that perhaps I may be able to be in the Cross Country as a disabled athlete next year and be able to feel as proud as all those athletes were that competed throughout the competition here. Next year the Cross Country Championships are in Canberra, at Stromlo that will be so marvellous perhaps our athletes will have home ground advantage.

I was ultimately tired by the end of the day and I broke down in tears, it had been a huge weekend, there had been disappointment when Jarrett had his frightening asthma attack but there had also been excitement to see Jarrett do so well in the relays. I have been resting and trying to recover, tomorrow we are going to meet Nana and Pop at North Lakes and do some shopping. If the weather improves hopefully we will be able to go for a swim in the tranquil lagoon at Settlement Cove.

My West Tigers have scrapped in again with a nail biting win against the Eels, it was a hard fought game with some unusual refereeing decisions but my Tigers prevailed and showed amazing determination to win.

'Even when your world seems grey and dull you can find a sparkle from within that will brighten your day as well as those around you.'

Sunday, August 22, 2010


21st and 22nd August 2010

Overnight the rain that had been menacing us all day on Friday disappeared to reveal a crystal clear blue sky on Saturday morning. It was a huge relief not only for Jarrett who had to run his race but also for me because the rain had caused my knee to swell and my bones to ache.

Jarrett's race was at 11.40am and we had to be there an hour and a half early, when we arrived it was still extremely boggy from all the rain but the sun was radiant in the sky and north westerly winds which were strong at times started to dry the course up rapidly. Jarrett and the other boys in his age group went for a warm up, did some stretches and then had to be taken over to the call tent where they would wait for twenty minutes before his race would start.

Nalani, Mum and I went to one area so we could cheer Jarrett on and Dad went to another area, when you are running it is encouraging to hear voices to cheer you on in different places around the course. It was time for the seventy nine boys that were in Jarrett's race to go to the start line to do their run through's. Jarrett's race was the largest of the day and the competition was fierce. It was then time for the boys to line up for the start of the race, the starter said "ready" then finally the gun went off, they were running and Jarrett had a perfect start, he was sitting in the top ten runners. He continued to run in the top runners until tragedy struck, he suffered a severe asthma attack that caused his lung space to become smaller and smaller until he felt like there was hardly any air getting into his lungs. Although the asthma attack stopped him from running his best, he showed determination and courage to continue the race so he would not let his team members down. It was so tough for him but he soldiered on and in the end came equal 27th place, I was so disappointed for him but also extremely proud of him. As he finished he could barely breath and was offered oxygen, he used his puffers and eventually his breathing returned to normal but it took a long time. Something that I thought was really fantastic was that his team member Lachie was so concerned for him and looked after him, they have been together in the team together for four years and they have built a friendship and have a mutual respect for each other and I know when Lachie has injured himself Jarrett is always so concerned about him also and I think that this is what been in a team and true sportsmanship is about.

Jarrett had worked so diligently, he was at his top fitness and I truly thought he deserved to do well, he is now looking ahead to Monday for the relays, although he was so disappointed he knows that he will be running for many, many more years and there is next year.

When we came home from the Race Jarrett and Nalani went in the swimming pool while Mum, Dad and I went to the shops to buy dinner for tonight. We also took a walk to Settlement Cove where there is a astonishing lagoon with a cascading waterfall, hopefully we can go back there another day and perhaps even go for a swim there.

At night we settled down and watched the Election coverage on the television, it was interesting to watch the figures and to see history in the making, a hung Parliament. We still do not know who will be the Prime Minister at the moment.

Even though we are in the warmth of Queensland which is certainly a phenomenal improvement on our arctic Canberra climate I am still suffering with pain and discomfort, which is a little disheartening because I was hoping that the warmer weather would give me much needed relief.

Today Jarrett had a team excursion to Australia Zoo while we headed up the Sunshine Coast to visit Nana and Pop, I was so excited about seeing them. I got to meet the totally adorable Chifley, their little Cavalier King Charles Spaniel, he seemed to really like me and wanted to be around me all the time. He is a very clever dog because he can sit, drop and do a special little spin for a treat. We went for a walk to Nana and Pop's local shop and on the way there we saw a couple of unusual sights, a dead cane toad on the grass which looked like it had a smile on its face and bats hanging from trees. We went back to Nana and Pop's, had a delicious salad lunch and some chocolate cupcakes which Nana had made especially for us. I did not feel like eating one at the time so I was lucky enough to be able to bring one back to Redcliffe with us as well as one for Jarrett. Nana had a special surprise for me, she had made me a pair of gorgeous pink ballerina earrings, I absolutely adored them. The time flew by so quickly and before we knew it, it was time to leave to pick Jarrett up from the excursion.

We drove to where some of the team were staying, at Camp Warrawee which was where we had to pick Jarrett up from, we only had to wait for about fifteen minutes and the bus arrived. Jarrett had bought a special gift for Nalani and I from Australia Zoo, an adorable soft toy, mine was a Tiger and Nalani's was a snow leopard, it was so nice of him to do that. We drove back to Redcliffe talking all about what he had all done for the day.

Today was a huge but exciting day and I am feeling quite exhausted. Tomorrow is the relay day, Jarrett has to run 2km and there are five runners in the relay team, it will be another exciting race, Jarrett's age group seem very strong so they could have a great chance at a medal.

'Life can bring us moments of disappointment in our life, but we must put the past behind us and look forward to happier moments in the future'

Friday, August 20, 2010


19th and 20th August 2010

On a wet, miserable Canberra morning I waited anxiously until it was time to drive to the airport to board our airplane, leave the cold climate behind and embark north to the Sunshine State. Mum, Jarrett, Nalani and I were escorted onto the airplane first, that is what happens when you are in a wheelchair, they get you settled prior to the other passengers boarding. I was beside Mum, Jarrett and Nalani sat together across the aisle from us. Dad had to stay behind in Canberra for work but will be joining us late on Friday night.

The plane was reversed out ready to begin to taxi, all the lights inside the plane kept flashing and then the pilot announced that we would be returning to have engineers fix the problem. It turned out that it was a problem with the generator, so we were delayed for a little over half and hour. I must admit I was just slightly nervous as we did taxi and take off, hoping that the problem had been fixed correctly. Once in the air however everything went smoothly and we actually made up some time, landing in Brisbane only fifteen minutes later than expected. We had to wait on the airplane until my wheelchair was brought up from the cargo hold and then we headed off to collect our baggage.

I could not believe the difference in temperature between Canberra and Brisbane, it was like going from one season to another, Canberra being so wintry whilst Brisbane felt so much like Spring. Once we arrived at our accommodation in Redcliffe and unpacked we went for a walk along the beach front enjoying the wonderful fresh salt air. Although the weather was so splendiferously warm I found that my knee was still in excruciating pain and was extremely swollen.

After dinner we went for a walk along the beach front, where many of the trees were lit up in a colourful array of fairy lights like a glorious rainbow. It was still so warm and very humid so I was not surprised when I woke during the night in pain to hear rain falling outside the window.

The rain continued today and the temperature was no where near as pleasant as it was on our arrival, although it was still an improvement on anything that Canberra has had to offer lately. We had a leisurely morning of going for a walk to the Redcliffe Shops where I found a Wests Tigers Pen to buy. The rain started to tumble from the sky and it did not look promising for our afternoon when we were going to St Pauls School where the Cross Country Race events are going to be held.

After lunch we called a taxi, he was such a friendly taxi driver and told us as we drove over the road where the Hornybrook Highway was that the new bridge is the longest bridge in Australia, spanning 2.9km. The rain was still falling constantly from the sky as we arrived at the school, luckily when we went shopping in the morning we had purchased some ponchos which kept us fairly dry, I was fortunate enough to find a pink one! The Opening Ceremony had to be called off due to the rain but when the rain stopped we all walked the 2km Course that Jarrett will be doing two laps of tomorrow. It is a terrific course and I could see the excitement in Jarrett's eyes as he discussed his strategies with us as we walked. Mum carried me most of the way but Nalani gave her a little break for a few hundred metres, I am so lucky that I was able to really feel part of the day. One issue is that because of the rain and the course being a cross country one, there were some muddy patches which were rather slippery. The forecast for tomorrow is for beautiful sunshine so hopefully the course will dry out quite quickly. Jarrett did a second jog lap of the course with his coach and they discussed race strategies and the possibility of having to wear spikes to run in if the course stayed slippery.

While waiting for a taxi to take us back to Redcliffe we were surprised to see a familiar face at the front of St Pauls School where we were waiting, it was Mr Browning, he used to be the Principal of our school. He even knew all about my journey and was so pleased to be able to see me and let me know his prayers had been with me. He wished Jarrett the very best of luck and offered to show us through his school after the relays on Monday. We had a long wait for the taxi but eventually one arrived, the skies had begun to clear and by the time we arrived back at Redcliffe there was a delightful pink sunset that brought so much promise for a wonderful day tomorrow.

My knee is pulsating with pain and terribly swollen, hopefully with no rain and a warmer day predicted for tomorrow I may be granted just a few hours of relief. The rain has completely stopped as I type this with my left hand, my right hand is still giving me some grief but at least I have use of my left. I pray that Jarrett will run with wings on his heels and be kept safe throughout the race tomorrow.

Wednesday, August 18, 2010


16th to 18th August 2010

As the crystal blue sky outside has turned to a dismal grey and the clouds are heavy with rain that looks like it will come tumbling out of them any second now I am typing this entry with just my left hand. My right arm is in a sling to give it support and some relief from the throbbing pain that is running up and down it, the story of how this happened all unfolded on Wednesday when I was at school.

Winter was still definitely with us on Wednesday as the clouds that hastily floated across our skies were snow clouds. Again I found the courage to go to school all rugged up with even a blanket and heat pack as my accessories. The wind was so icy, I felt as though my face was turning into an icy pole as we walked briskly down the path and into school. We had Chapel first and we heard the story of Rahab, the prostitute who let the Israelites hide in her home. She told them that she knew that the Lord had given them the land and that everyone in the Country was terrified of them. She promised to keep their secret and in return her family would not be killed, she tied a red cord to her window so she would stay safe. After it was all over she was promised that she would be treated well, which she was. So she went from being a person who was not accepted to being one who was accepted. Then we were told that we all need others in our lives to help us through events that occur in our lives. Through my journey I have often thought that it is my responsibility to travel it but I know I could not have made it this far without the amount of support from family, friends and even strangers who have become such an important part of my life.

After Chapel it was then time for PE, we were doing discus, shot put, javelin and long jump, the wind was absolutely freezing up on the oval where it is open, I threw the 2kg shot put and the discus and was so relieved when it was time to return to class because even with heat and a blanket it was still way too cold for me. My last lesson for the morning was Integrated Studies and we were given three quotes on the board and we had to reflect on what we thought the quote meant in our lives. I chose one by Helen Keller about one door of happiness closing, staying in the dark and not realising that there was another door to be opened. I could relate my journey to this and behind the new door was a rainbow in the distance. I was given an audio copy of The Giver to make it easier for me to read through it as I am finding it difficult to read by myself and Mum has been reading it to me.

We collected Jarrett at the Front Office, to take him to a sport massage appointment so that his muscles would be all loosened and ready for his race on Saturday. It was sleeting when we dropped him back at school and I felt sore and exhausted. I enjoyed a warm cup of tea and a soothing heat pack. Before I knew it, it was time to return to school for the afternoon session, double English. I worked on one of the reading tasks, I was rating each chapter and then made a line graph from the ratings I had given each chapter. We have to do a draft first and then we do a good copy in our publishing book. My body began to feel so fatigued and then next thing I knew Mum and my teacher were asking me if I was okay. What had happened was that my eyes had dilated, my head had dropped and I had totally switched off from the world, it was a seizure. When I came back, I found that my right arm was just hanging, I had no movement in it and it was also painful and all I wanted to do was lie down and rest. So Mum took me home as quickly and quietly as she could so not to upset anyone.

Once at home I lay down and I rested, I felt unusual, I can't really describe it at all other than it was like I was not in my body at all, I so desperately wanted to cry, but nothing would come out only little sobs. Mum put my arm in a sling to give it some relief from hanging randomly at my side, it helped. I think Mum was really worried and upset by what had happened, she told me that it was nothing to worry about but it does worry me just a little.

My night was restless yet again but as I did not have school I had the opportunity to rest longer in bed in the morning. I made a list of what else I needed to pack for our trip to Brisbane, played solitaire on the computer and listened to six chapters of The Giver on the CD player. My arm still had limited movement and was painful as well as my continuing pain in my right knee, ankle, foot and hip. This appears to be just a new challenge for me to overcome, I guess in a way it is like my journey is a path and sometimes the path goes off on a detour. I will get back on track though, I always manage to with my determination and courage and as long as I have those I know I can be strong.

Mum and Nalani had to go to the doctors in the afternoon, the doctor was concerned about me and thought the sling was an excellent idea. He wants to organise some extra bloods to be done prior to me returning to Sydney, at least when I have them done here, he also gets the results so explains everything to me extremely well, he doesn't try to hide things from me. Nalani had to have a lump under her big toe examined, it turned out to be a wart and she had to have it frozen, then in two weeks she has to go back to have what is remaining sliced off. Mum just had to get scripts and when I go for my blood test ready for our return to Sydney, Mum has to have blood tests done also. I wonder if she will be as brave as I am. We had running training in the afternoon and I decided to watch Cinderella II on my portable DVD player.

Rhiannon had called during the day about a man from Mobility Matters coming to visit with some walking frames on wheel, also called rollators to try out to assist with my walking. We thought that the Friday when we return from Brisbane would be a terrific day to have him over. This will be fantastic because they may help me to gain some mobility around the house and maybe more mobility in my daily life.

I also received a letter from School, one of my artwork has been selected to be considered to be placed on next years Middle School Diary Cover. I felt so honoured to have mine selected and even if it is not one of the ones chosen for the diary, it is exciting to think it was even considered.

Today the sun shone and I felt so exhilarated by it, the sun truly does lift your spirits even when you are in pain or feeling miserable. It was so much warmer heading off to school this morning although I did still have a heat pack on my swollen, aching right knee. My right arm is still immobile and painful but the sling does provide some relief for me. The roll was marked and some of the students in the class read thoughts they had written in their journals from yesterday and then it was time for electives. In French we went over likes and dislikes in food and then listened to people speaking in French, ordering food at a Cafe. We had to write down what they had ordered in English. A couple of the people on the audio mumbled rather than speaking clearly so this made it quite difficult to translate. I am enjoying French but sometimes it is rather difficult to get your head around the language. After French was Textiles and we were doing paper weaving this time, even though I had the use of only one hand I managed to weave two patterns. One I went in and out of each slot and then the next one I did a pattern of two then one.

It was then recess and I was glad to be finished for the day as the wonderful sunshine from earlier in the morning had made way for dark grey rain clouds. On the way home we walked across the road so Mum could vote, as we have a Federal Election on, on the weekend and of course we will be in Brisbane. We came home for a warm cup of tea and then even though I felt like resting I knew I had to get footy tips done. Pop is winning at the moment on 90, I am on 88 and poor Nana is lagging behind on 80. With only three weeks left unless Nana has a fantastic few weeks and Pop and I perform badly, I think it will be between Pop and I who will win.

The rain is tumbling down outside right now and the house has become rather cold even with the heating on. It is not bothering me too much though because I know that tomorrow we will be heading off to sunny Brisbane leaving this dismal weather behind for a week.

Sunday, August 15, 2010


14th and 15th August 2010

As icy winds rattle the windows and the ran splatters onto the window panes my bones are chilled and painful. Our weekend has produced some truly horrible weather conditions that surely only the brave or foolish would be out in. Well we were one of them on Saturday as Jarrett had a pointscore Cross Country race out at Stromlo. From the car it actually appeared that the south side of Canberra had fared much better in the weather stakes but we were deceived, although the sun was shinning it had no warmth in it at all. I had my thermal singlet on, three jumpers and a coat, a beanie and a scarf as well as a blanket wrapped around me and I was still freezing!

Jarrett ran in the three kilometre race, they were doing two laps of the 1.5km loop, as it is only a week out from Nationals Jarrett was told by his coach to cruise. Well if what he did was cruising then I would hate to see him go hard. He ran the 3km in 9:35 that is averaging 3:11 per kilometre. He came second but won his age group, he was not even exhausted at the end and said it was like an easy training session. I think he now has a really fantastic chance of winning the ACT Junior Distance Runner of the Year.

Even though I was so rugged up and had found some shelter I was in so much pain that we had to change some plans we had to go to the runners shop and come directly home so that I could try to get some relief from my pain. Heat packs, panadol and warm cups of tea helped warm my body again but the cold weather had already taken its toll and my right knee was unable to bend again until much later in the evening.

I received a lovely telephone call from Anna, who is Tess my Starlight Wish Granter's sister, she is going over to Greece and she wanted to let me know that she was taking a copy of my book with her to give to a cousin. She also told me that she was hoping to take a photograph with my book at one of the famous Greek monuments while she is there. She is also taking photographs with her of my book launch so that she can share my story with all the people she meets whilst over there. That put a little sunshine back in my day, I know I have said this so many times before but the more people that my story reaches hopefully the more awareness I can raise and also maybe just inspire others a little.

I watched the new Alice in Wonderland DVD again with the rest of the family and they enjoyed it. Then played some Upwords and did my tangram teasers, my right hand was playing up again and I found it difficult to grip things again, it was most likely from the cold. My pain continued during the night but I actually think I only woke about six times to ask to be turned and to have painful knees, hips and feet massaged.

Today was a mild morning as it had rained overnight, we headed out to running training at the AIS, as we drove towards the Gungahlin Drive extension we had to be diverted as there had been a bridge collapse, it looked devastating and will be an enormous clean up job. The icy winds began to increase and then the rain began to fall right at the end of running training. We decided to go to the Runners Shop today, I needed new joggers, my shoe size has gone down another size, I was lucky they had a huge sale on, I got some Asics which I find fit my feet perfectly. Jarrett used one of his gift vouchers from awards and bought a pair of running gloves which he has been after for a while. We then went on to DFO for a stroll, it was lovely and warm there and we found a couple of bargains whilst we were there.

When we came home though I started feeling dizzy and nauseous, I had to lie down for a while to try to help it but found lying down made me more dizzy so I just sat quietly and the dizziness went away. We then watched a DVD that Dad had bought himself, Hercules - The Legendary Journey's. Mum and Dad said it used to be on television when they were younger and they used to enjoy watching it, do you know what, it was actually really good.

I can hardly wait until we head off for Brisbane as the weather here is absolutely horrific and is going to continue to be that way for most of the week. On the day we arrive in Brisbane it is supposed to be 26 degrees with an 80% chance of rain but on Jarrett's race day it is forecast to be 21 degrees and sunny.

I have school tomorrow morning and afternoon and then again on Wednesday morning, I have finished all my assignments and homework, even though at times it is quite demanding for me to try to complete it to the best of my ability.

'Even if you can't just snap your fingers and make a dream come true, you can travel in the direction of your dream every single day'

Friday, August 13, 2010


12th and 13th August 2010

How miraculous it was to wake this morning and see the sun shinning ever so brightly through the window. A smile came to my face and made my heart soar even though I had spent another sleepless night in pain and generally feeling so uncomfortable.

Yesterday had been another despicable day weather wise, woefully damp, icy winds and dark, gloomy grey skies. I had not slept well and when I had finally fallen asleep without disturbance it was the early hours of the morning, so when it was time to go to school, I was still sleeping. My body needed to rest to try to recover so I did not go to school and with the weather being so horrific it was the best thing for me to stay at home in the warmth.

My pain I rated at a six out of ten in my ankle, a six out of ten in my foot, a seven out of ten in my hip and the worst was my knee being an eight out of ten. I used heat packs, panadol and dencorub to try to ease the discomfort that I was having.

I had to get my Integrated Studies research completed so I worked on that for a while but became really fatigued so I had to stop and rest before I could do any more. Eventually I was able to finish it but I felt like I had just competed in the City to Surf race. I think that my brain just gets really tired and to try to push too hard causes so much stress. Actually when I finished my research I think I felt as frustrated as the land owners must have felt at the peak of the feral rabbit epidemic.

Some more rest helped me to revitalise enough to have a game of Upwords but I had problems making words because I must have been still fatigued from doing my homework. I then helped Mum make vegetable slice for dinner, I really love eating vegetable slice it does not upset my weak stomach. I had French homework to do as well as writing a Haiku and Cinquain for English. By the afternoon when it was running training I just wanted to go to bed but of course I couldn't. While we were at running training we had a call from Liz to let us know when they wanted me back in Sydney. I have to go up to Sydney on Fathers Day and have appointments on the Monday onwards. My MRI is on the Tuesday and they have scheduled my Lumbar Puncture for the Wednesday. I also have to see the neurologist, oncologist, orthopaedic specialist, pain clinic, physiotherapy, endocrine team and social worker. It will definitely be another busy week but hopefully the appointments will be more spread out than what they were last time. Depending on results she said that I may have to stay for ten days this time instead of seven, there is some concern about abnormal cells that showed in my last lumbar puncture. Remember though that I am optimistic and I am sure this will only be another hurdle that I am going to be able to jump.

My knee throbbed constantly as I sat and watched some television and played my Nintendo Ds game before having my cup of lipton tea then going to bed. In bed I just could not get comfortable as I had the usual pain as well as a new pain across the lower part of my spine, lying on my left was uncomfortable and my right was even worse, so I settled for my back as the electric blanket was on and providing heat to soothe it.

Another restless night but with the sun shinning today it made me feel much warmer not only on the outside but also on the inside. I did not have school today but worked on some more French and finalised my poetry. I played Upwords twice played Athens Olympic Games on the Playstation because I could elevate my knee whilst doing this and watched Pocohontas II DVD.

Tomorrow Jarrett is racing at Stromlo in his last race before Nationals, if he runs well he has a chance of winning the junior male distance runner of the year, that would be incredible for him and so well deserved, he always shows so much dedication and enthusiasm towards his running and he has many long term goals to represent Australia one day.

It is now only six days until we fly into sunny Queensland, I am hoping that the change of climate will assist my aching and tired body, even if it is just a little, that would be better than nothing.

Here are my poems that I wrote:

The rain
beautiful sight
reflecting Gods beauty
helping our precious Earth
soft tears.
golden and bright
enlightening our days
with warmth on our delicate face
Gods light.
Tiny rain droplets
fall gently from the grey skies
refreshing our Earth
Dazzling rays of sun
reaching out to touch our lives
the joy of sunshine
May the sun keep shinning on all your lives and fill your days with every happiness.

Wednesday, August 11, 2010


10th and 11th August 2010

We have been absolutely inundated with rain over the past two days here in Canberra, not that anyone is complaining, the rain definitely gives rebirth to our Earth but it can be so demoralising when you have to try to go to school and appointments.

I woke crying yesterday morning because I was in severe pain, it ripped through my body like a hurricane on a destructive course. It had kept me awake most of the night and I think my tears matched the drenching rain outside. I really did not feel up to going to school but Mum convinced me that being there would take my mind off my pain. My Mum is such a remarkable person but on this occasion she was wrong. I could not even bend my knee as when I tried to, a shock of pain almost like a spark of electricity shot up my entire leg, so there I was in my wheelchair with my right leg sticking out being pushed in my wheelchair, umbrella up in the rain to school. When we arrived I felt like bursting into tears because being in the bitter, wet weather had made my pain worse. We had Science first and I tried to concentrate on our lesson about Static Electricity but I found I spent more time endeavouring not to cry. I heard bits and pieces about protons, electrons and neutrons that form an atom and how two positive charges repel each other but a negative and positive attract. Luckily, Mum took all the notes from the board so that I can read over them and understand them when I am not in so much pain. After Science was English and we read through a short science fiction story about people living on Venus and the sun only shone once every seven years for just one hour. How abysmal would that be? I love the sunshine it warms my aching bones and lifts my spirits. We have to write a Cinquain poem which is a poem of five lines with a syllable pattern of 2-4-6-8-2 or 22 syllables in total, something like this:
The sky
grows light and pink
as the sun rises and
warms the sleepy mountain with a
soft kiss
or a Haiku which is a Japanese form of poetry, it contains 17 syllables that are divided into three lines being 5-7-5. It does not rhyme, here is one:
Freezing winter wind
blows the snowflakes here and there
making soft mountains
anyway we have to do one on sunshine or rain for homework. I think perhaps I will do mine on rain because with it raining you can use that for inspiration. My next class for the day was Mathematics and we were working on algebra, which I absolutely love doing. We had questions to copy from the board which Mum does for me because I am way too slow and would never even finish the questions if I had to write them. I wrote the answers though, just before recess we began work on our next unit which is solids, I don't think I am as good with those as algebra so it will be a challenging unit for me. I pushed through my pain to do this but by the end of class I just wanted to break down in a flood of tears, in fact after I was signed out for the day and we went out the sliding doors I just burst into tears.
When we arrived home, I vomited probably from crying because it only happened once, Mum comforted me with a loving cuddle that soothed the tears but unfortunately not the pain I was feeling. Heat, dencorub, rest and warm cups of tea helped me feel a little brighter, I did my Mathematics homework and had a game of Upwords. With all the rain I had been hoping that running training would be cancelled as I did not want to venture out in the arctic weather again. The ACT Government had closed all the sports grounds but running training was still on as it is not a team sport. In a stroke of what could have only being luck, the rain stopped while Jarrett was at running training however came pouring down in buckets just as we returned home. I went to bed tired and aching but felt some comfort in the fact in knowing that the next day I had my physiotherapy appointment.
I am not sure if the weather from one day to the next can deteriorate so drastically but today was even more turbulent than yesterday. In the morning it was almost as if snow was falling from the grime, grey, heavy clouds that floated gloomily across our skies. Today I could not even bend my right leg, it was stuck and it was painful. I looked through Shirley Barber books for inspiration for my paintings that I am doing for the new Ronald McDonald House here in Canberra, her illustrations are so unique and draw you into her wonderful imagination.
Then it was time to go to physiotherapy, I was so excited. Rhiannon asked how I had been doing and she could tell by my face that I was not well. She worked on my knee which was hot and swollen and then my hip which I could feel relief as she massaged through the muscles. She said she wished she had a magic lotion that could make it all better for me, she is the one though that helps me so much with my muscle problems, unfortunately they seem to only be relieved temporarily, I think it is going to take a long time, if ever to have total relief always. My pain remains but at least there is some less muscle tension and a huge difference was that I could bend my knee, do you know how frustratingly difficult it is to go to the toilet and not being able to bend your knee!
I rested when I came home, my body just feels like it is worn out, what a pity you can't have a tune up on it like you do with your car. I played Upwords and then worked on my Integrated Studies assignment on Feral Rabbits. I am finding that when I have to concentrate on something for an extended period of time I am experiencing double vision and headaches, so I have to try to learn to stop before they come on. I then watched Tinkerbell and the Lost Treasure DVD.
If I could sleep soundly I know my dreams would be of our trip to Brisbane next week where I am hoping that the warmer climate will provide me with the relief I so desperately desire. The rain continues to tumble down on the already soaking ground outside and the winds blowing powerfully picking up leaves and papers and tossing them wildly, as it carries them along. In life you can feel like those leaves or pieces of paper being tossed roughly but then you have to remember that eventually you find a place to gently rest.

Monday, August 9, 2010


8th and 9th August 2010

Life is not about running away from our problems it is about facing them head on and attempting to defeat them. My pain continues to fill my days causing me difficulties with walking, standing, sitting and sleeping, it gets to the point that I feel so nauseous and just want to cry out for someone to make it stop. I am hoping that on my return visit to Sydney in September that the doctors can do something to give me some relief. Until then I try to ignore it and find comfort in the love of my Mum mainly as well as Nalani, Jarrett and Dad who are there trying to help me in any way they can.

Sunday morning I was tired and sore but I still went to running training for Jarrett at the AIS. It was only two degrees when we first arrived there but with the sun shinning brightly it quickly warmed up and we were able to go for a walk, I noticed that the wattles are starting to bloom, this is a sign that Spring is coming, Wattle Day is on 1st September and by then the wattle trees are in full bloom with golden, yellow flowers. When we came home we worked on homework and Nalani even asked my advice on what drawing she could do for a new cover for a book she read called Taronga, she told me the story and then I drew what I thought she could do, she liked some of my ideas and is going to use them in her final drawing. I did some reorganising of the drawers in my bedroom in the afternoon the weather had become extremely wintry again as the cold winds from the mountain engulfed the city.

At night we watched the City to Surf replay on television, Jarrett would love to run in it one day when he is older. We were cheering on Martin Dent because he is a local runner from Canberra and he is an inspiration to Jarrett and when they run, Jarrett has a very similar style to him. It was a great race, I can not believe how many people run it. I am so looking forward now to the run that we are doing in November, The Train For the Brain Fun Run.

I went to bed feeling tired hoping that I would have a less interrupted night sleep, however I woke frequently every hour with pain and discomfort, but after 4am I slept through until 8am without waking, so for me that was fantastic. When I woke, I was still feeling so tired and the pain continued to cause me discomfort particularly in my right knee, foot, ankle and hip.

I did not have school today which was a relief in a way because I think I have said this before, on the days I don't have school, it is not a rush and I can take my time. The sky this morning was crystal clear, not a cloud in sight and the air still however quite crisp as there had been a frost overnight. The suns rays must be brighter and warmer in the mornings now because the temperature seemed to rise much more quickly. I sat with my leg elevated to try to help the pain in my sunny position in the family room and did my Mathletics homework, it was algebra questions and there were three different activities each with ten questions. I was so proud of myself because I was able to achieve 100% in each activity, I am enjoying algebra immensely. I helped Mum decorate a box for the Race Course for my Collection Tin for the Sydney Children's Hospital Brain Tumour Fund, it is going to be placed in Mr Cappuccino's Coffee outlet every race day. We then played Upwords which I won because Mum was stuck with the 'Qu' and there was absolutely no where she could put it, you really need to get those sort of letters early in the game.

After a refreshing, warm cup of tea and attempting to do some of my physiotherapy exercises which my upper body ones I found not too difficult but trying to ride the exercise bike proved too much for me as my knee could not handle it. I asked Mum if I could start to do some packing for Brisbane, so she pulled out my pink suitcase, the one I always took to hospital with me when I was having chemotherapy and I began to go through my list and pack. I am so excited about going to Brisbane in just ten days, not only will I get to see Jarrett running, we will also be able to see my Nana and Pop again because they live on the Sunshine Coast. Packing actually made me quite fatigued and my pain was starting to get on top of me again so I rested in the lounge with my fluffy pink blanket and Theodore. We then watched the Princess Protection Program DVD, there were some really great lessons in it, like a princess is not someone who is popular and looks gorgeous they are someone who is kind, loving and generous, beauty comes from within and then shines on the outside. Mum said I am a princess because I think of others all the time and have done so much to help others when in my situation I could of easily have been selfish and take advantage of my illness. That would never be me, my journey is one that I have been specially chosen for and I know that through my journey I am meant to help many people.

I am now going to try to finish off my weaving for Textiles next week, my right hand is starting to cause me problems again and I feel if I don't do it today, I may not be capable of doing it tomorrow. Only two more days until I have physiotherapy, I can hardly wait, it often provides me with some relief, it certainly does not cure anything but at least a couple of days of some relief is better than nothing at all.

Saturday, August 7, 2010


6th and 7th August 2010

Sometimes I am not as courageous as you think because on Friday, I really did not feel up to going to school, you see my pain was just tormenting me to the point that I thought I was going to vomit. My right knee I could not bend at all as when I attempted to the pain ripped through my entire leg, on this day all I wanted to do was curl up in a corner somewhere, try to shut out the whole world and I guess basically feel sorry for myself. Then I thought, no, I promised myself that this cancer and its devastating side effects were not going to beat me, I have to fight it, I must remain focused and strong.

School was really a little bit of a haze to me as the pain invaded me but I breathed through it and put a smile on my face, I hate letting people know how much pain I am, I don't want them to feel sorry for me. It was Integrated Studies at school first and the class were working on a task from a movie that they watched when I was not there, so the teacher gave me the assessment task that we are working on. It is to research information about a feral animal that was introduced to Australia. I decided to research the Oryctolagus cuniculus which is the European wild rabbit, they arrived in Australia with the First Fleet and cause severe damage to the natural environment and agriculture in Australia. We have to answer several questions on the topic and then present the information as a display. After Integrated Studies I then had double science, we made a circuit using batteries, bulbs and switches, we had to try to make a circuit that had two batteries, two globes and two switches and it had to work. I worked with Carly and after some initial hiccups, ours worked perfectly. We then had to draw up the circuit that we had made, it is not a normal drawing there are special little symbols for different parts of the circuit. School was arduous and it was with relief and some pride that I had actually made it there and done as much as I could, heading home I cried, I needed that warm and comforting hug from Mum once we got inside the house.

Heat, voltaren, massages and pain killers helped a little for the rest of the day, but I was not able to do my physiotherapy exercises, I just couldn't. I spent the rest of the day resting on the lounge nodding off to sleep, waking, playing some Nintendo DS and eventually watching my Tinkerbell DVD.

My day was brightened when I received the most extraordinary email for Sarah, I have mentioned her before, I met her at the Brain Tumour meeting she is so inspiring and I think that we were destined to meet, so does she. She shared a special message that someone sent her in a card and I would like to share it with you too "Faith is the bird that feels the light when the dawn is still dark". I am excited because we are going to organise to get together, even though she is older than me, I feel so comfortable with her and we can share our experiences and I know that she will truly understand.

My pain kept me awake again overnight, this seems to be more than just a little hurdle for me it is like a marathon race but I remain determined that I will finish it eventually, meaning that my pain will be taken away.

Dad had to work another race meeting again today, two days in a row, that is pretty unfair. So we had to take Jarrett out to Stromlo for running training. It had been frosty overnight, the sun was out and was melting the icy patches very quickly. The air was still and fresh, Mum, Nalani and I went for a walk around the track. The view from the course over to Black Mountain was so picturesque as a light fog still gently floated at the base of the mountain and the tower seemed to glisten in the sunlight.

I was so tired still and when we came home I needed to rest my weary body. I wrote a list for packing for when we go to Brisbane. We then went for a walk to the Gungahlin Town Centre for a couple of groceries. When we were there I felt a wave of nausea come over me, my knee was pounding and the pain went into my spine, so we came home. I rested again, took a pain killer and then typed some letters to people who had written to me.

In the footy tips I have got both games right so far this week so I am hoping that the other games will go in my favour as I really need to have a great week to catch up to Pop, or he is going to win this season.

I had homework for English, I made a word search that related to the book I am reading - The Giver. I used the computer to do it and it made it much easier than trying to write it up. I printed it out on pink paper and was really happy with my effort.

Next week is quite busy as I have school on Tuesday and Thursday, physiotherapy on Wednesday, assignments to complete and running training for Jarrett.

'If the task in front of us is a mountain, we don't have to climb it all at once, if we take one small step at a time we will suddenly find we have conquered that mountain"

Thursday, August 5, 2010


4th and 5th August 2010

'The spirit within in you is a river that flows along and touches other people's lives along its journey' I hope that my determination and spirit of hope is continuing to touch the lives of everyone I meet. Some days I feel like I am letting everyone down when I am complaining about the pain I am experiencing but then I realise that I am allowed to be human and even in pain I always try to find a positive to provide a ray of sunshine even on the days that I am feeling low.

Speaking of pain, I just can not seem to be able to overcome it, no matter how determined or positive my attitude is. I long for some relief even if it is just enough to help me sleep throughout one night each week. I guess that is asking for a miracle though and also a little selfish of me. The last couple of nights I have frequently woke with what seems like pain that is as deep as the depths of the ocean, Mum does everything she can to help and says she wishes she was the one in pain not me. Perhaps when I return to Sydney in September something can be done to help me. Enough of doom and gloom, I have to my rainbow which I believe is out there somewhere just waiting for me to climb the mountains that have been put in my path.

Yesterday I had school, even though I was tired and my tiny body was thumping with that familiar pain, I had excitement in my heart because I had my electives. Before electives began though there was a meeting in the classroom with the SRC's who ask the class to put forward any ideas to that to their next meeting, ideas that came up were; a school touch football team for girls, a gridiron team for boys, questioning what has happened to the Government promise of computers for every child, a fundraiser for a girl in my class whose older sister has leukemia and an unusual idea of a tree swing. The class was extremely noisy during this time and I could not hear what was being said fortunately they were writing the suggestions on the whiteboard so at least I could read about what was going on. This is where my hearing aid does not work, when there is excessive classroom noise but that is not all the time, thank goodness.

It was then time for our first elective and mine is French, we learnt about regular 'er' verbs, looking for the ending and the stem of the word and then putting it into different tenses. Once I got into how it all worked I understood it more. We then were handed a worksheet to work on, Mum was helping me and the teacher came around to check it and Mum had forgotten that when Je is followed by a word starting with a vowel you drop the 'e' and it becomes J'. After an hour of French it was then time to go to Textiles which I am really enjoying, I was wondering what we would be doing as Mum pushed me in my wheelchair to the Textiles room. My teacher was away but we had a relief teacher who found out from the other students what we were doing. I had to make my cord for my sample calico bag first, that was done by tying the ends of nylon ribbon together and then using two pencils, one either end to twist it until it sprang back on itself making a lovely cord. We then started on the next task which was weaving, we used meat trays and made 1cm cuts along the top and then matching ones across the bottom, we threat wool through these fastening either end with sticky tape. I could then begin to weave in and out of the threads. I chose a rainbow colour wool because as I have said before I know that there is a rainbow somewhere out there waiting for me. Mum said I could bring my weaving home because I enjoyed it so much, I found that when my right hand got tired and sore, I then used my left hand. I actually found weaving very therapeutic and I surprised myself by finishing it all off last night. We had a meat tray from dinner, so I am going to do another one, I don't have my electives next week at school so I can work on that one at home and then the week after take them both back to the teacher.

I rested for a little when I came home because we were having some very special visitors, Luke, he is the photographer from Newcastle who came and took lovely photographs of our family, his wife Michelle and their gorgeous little one year old son Josiah. They spent a couple of hours with us talking about what we have all being doing, they even got to try my vanilla slice that I had made the day before and told me it was delicious. This is when I feel so blessed, through my journey I have not only had my marvellous family behind me supporting me but I have met so many new and extraordinary friends who I know will always be there for me.

Last night I found I was so exhausted and again in dreadful pain, I was hoping for a decent night sleep but, you guessed it, I did not sleep well, my entire night was so disrupted by pain this time my knee, ankle, foot and my hip gave me the most distress. I think I fell asleep properly at around 5am this morning and I slept until 7am but stayed in bed until 8am, it was fantastic that I did not have to go to school today because it meant I could take things slowly and also give my aching body a little more rest.

My hip is painful today and I feel all lopsided because of it, my right knee is devastating swollen, not to mention that right foot. I have tried to stand and do a little walking but it is impossible and just so terribly painful I can not bear it. I do my exercises every day to try to help it but the weight bearing ones I am unable to do, riding the exercise bike has not been possible either over the last few days as my knee is so sore and swollen. I have however done my upper body exercises as the other day when my shoulder clicked it seemed to go back into place, so I joyfully celebrate the fact that something has gone right and I have keenly worked on those exercises while I can.

While Mum was doing some housework, I read to Tinkerbelle and Theodore, a book that Nalani had borrowed as part of an English assignment she is doing on Children's Literature, it is a younger readers book called 'The Diary of a Killer Cat' it was a great book and wearing my hearing aid while I was reading made a difference for me because I could hear myself, I am finding that I can hear I am not pronouncing some of my sounds correctly, this is an effect from the tumour. After reading I worked on some Tangram Puzzles that Luke, Michelle and Josiah gave me, these are great for thinking skills. I played Upwords and then felt quite fatigued so asked Mum if I could lie on the lounge and rest. After resting for a while we watched Alice in Wonderland, it was very different to the original but I really enjoyed, I think I missed some parts of it because I nodded off as my eyes were heavy.

I received a letter in the mail today from Mr Seselja, he wrote to tell me that on 24th June during his adjournment debate speech in the Legislative Assembly Chamber he made mention of attending my book launch and about me. At the end he said that I was a very special young lady and he asked the Assembly to remember as they work in public life the lesson that I have taught us all about courage, humanity and compassion. I feel so honoured and humble that he said that about me. He also asked how I was going and told me to keep smiling. I think that is so marvellous that he did that, he must be such a busy man and he has taken the time to write and tell me that. I am going to write back to him and thank him, I think it is so important to acknowledge the kind words of others with your own. I think you can actually view everything he said if you look for the Hansard in the ACT Legislative Assembly for that date.

This afternoon is running training, it is an icy cold day today with the winds picking up this afternoon, the forecast temperature was only ten degrees so I think I will have to rug myself up to keep warm while we watch Jarrett at training. Tomorrow is school again, I have Integrated Studies and double Science, this has been a long week for me but I have been able to attend all the days I have set myself so that is an achievement.

Tess my extraordinary Starlight Wish Granter has to have an injection in her spine as she has been suffering with pain, please pray that the injection will give her some relief and that she does not have to have surgery. We keep in touch all the time through emails and telephone calls, she is another person that has made a difference to my life and if I had not been given this journey I would have never met her. Also could you please keep Olivia Lambert and her family in your prayers, she is a young girl from Canberra who has neuroblastoma and she has relapsed, the family are packing up and moving to Germany for her to have treatment that is not available here in Australia, they are trying to raise funds to support their trip she has a website it is http://www.olivialambert.com.au/.

I will write again on Saturday, hoping that this wintry weather will be swept away and we will see a hint of Spring in the air in the not too distant future.

Tuesday, August 3, 2010


2nd and 3rd August 2010

Wow, winter was back with a vengeance yesterday, it was as if the air was a freezer and we were the ones being frozen. My bones suffered terribly and I was in agony as we headed off to school in my wheelchair. I was excited about going to school with my new hearing aid, hoping that it would be a whole new world of learning for me but the weather and the pain made wish I was inside our lovely warm home cuddling Ash, my special warming bear. My first lesson for the day was Chapel, it was fortunate that we beat the rush of students and were able to get into the Chapel quickly and not have to wait out in the icy cold. In Chapel we learnt about Moses and how he answered Gods call to help. When God told him he was to free the slaves he was not sure he could do it but God reassured him he would be by his side and told him all his strength was in his hand. We were told that we are not too young to feel that we are being asked to do something for God. This I know only too well, he has called upon me to travel this journey and through my journey my destiny is to help others. I have done this through writing my book, raising awareness about Brain Tumours and inspiring as many people that I meet as I can. God never said that any journey would be easy and I can tell you mine has to be one of the most difficult but I always try to face it with courage, strength and determination and that is all I can do. Many people would want to turn and hide from a journey like mine and although it is often really difficult for me to share my story, it is also the most important thing I can do in my life.

After Chapel I had PE which I love, although with the formidable weather I was not sure I would be able to keep warm enough. I have to take the long way around to get up onto the oval so the PE teacher suggested that Mum and I make a head start and meet the rest of the class up there. We were doing shot put, terrific because that was something that I knew I was capable of, even being in a wheelchair. My PE teacher always encourages me and it drives me to do my best, I used a soft ball just to get my technique and see what it was like throwing from a wheelchair. I can now share with you that it is definitely more complicated to throw from a wheelchair, normally when you throw a shot put you use the strength in your legs to help propel the shot put, in my case, sitting in a wheelchair, I did not have the benefit of my leg power, but I had the technique and I pushed that soft ball with all my strength, not that it is anywhere near what it used to be, but I pushed it as hard as I could and I was impressed with my effort. It was not as far as what everyone else could throw, but they are not in a wheelchair and I just feel so proud that I am out there giving it a go. Towards the end of the lesson, I was exhausted, who would think throwing a soft ball could take so much out of you. I went back to class tired but with extremely rosy cheeks from the cold most likely but also from the exhilaration of being out there doing my sport.

We then had Integrated Studies and I had to write what special qualities I thought I had inside an outline of a person, which I hesitantly say, looked like the outline of a victim from one of the crime shows on television. I looked through the different cards with the qualities on them and carefully chose which ones I think were me. I chose bravery, perseverance, hope, kindness, religiousness and spirituality and can love and be loved. I decorated my person and the teacher was going to get the rest of the class to write around the outside what qualities they thought I have. At school I found that my hearing aid worked extremely well, it was like heaven being able to hear the teachers instructions, however when the class became a little noisier all I could hear in my hearing aid was crackling and I was unable to hear the teacher just like without my hearing aid. I was a little disappointed by this but then remembered I was told that this could happen and I may have to have an FM transmitter to help make it clearer in this situation.

It was recess and I was so pleased to be heading home to the warmth and comfort of our home and a lovely hot cup of lipton tea. I also really needed to take a pain killer as I was feeling ill from my pain. My right hand throbbed, my right knee was dreadfully swollen and the pain was virtually unbearable, Mum put a tubular bandage on it to try to reduce the swelling as well as try to keep it warm and my right foot was red and swollen and I could not bear to put any pressure on it. I rested under my lovely warm pink, fluffy blanket with Theodore and then played a game of Up Words before having to return to school for the last two lessons of the day, double English. As we left the house I wanted to beg Mum not to take me, not only had the weather deteriorated dramatically, it had also started to rain although I am sure it was little pieces of ice that were falling on my umbrella. Once in the warmth of the classroom I felt a little more comfortable, we had to work on a reading contract for English, we have to gain a minimum of forty points through doing activities. I decided to start on a Word Search using vocabulary from my book The Giver. I went through the book and told Mum the words and she wrote them down, I chose them carefully as they had to reflect what the story is about also. I was relieved when it was time to go home because I had truly had enough, I was sore and I was tired, it had been a long day and it takes its toll on me.

In the evening I did some knitting but my hand just could not cope with it, so I had to reluctantly give up. I really miss being able to watch MasterChef on television but I watched Undercover Boss and thought that many bosses in the world should do that because I don't think many of them realise exactly how much work or how dedicated their workers are.

My night was restless and I worked out that I only achieved four hours sleep which means Mum would have had the same or less than me. Fortunately, I did not have school today, I seem to need that day in between to recover so I am able to function at school properly the next day. The winds ripped around the house, bending the trees so they almost looked like a person attempting to touch their toes. The sun appeared so I sat and let my aching bones soak up its warmth through the windows of our family room. When I felt up to it I made some vanilla slice, you use morning coffee biscuits, milk, cream and a vanilla pudding mixture. I have to leave it overnight to set and then I can cut it up tomorrow.

My knee was in so much pain, it felt like it was being crushed, it hurt to bend, it hurt to have it straight there was nothing that could be done to alleviate how it felt. To take my mind off it, I did some French homework, I have to concentrate so much on it, as it is not easy. I then played Up Words twice and Mum read two Shirley Barber books to me while I rested on the lounge under my pink, fluffy blanket. I love Shirley Barber books, they are probably more for younger children but the stories are so lovely and her illustrations are magical, they fill your mind with beautiful visions and make you feel like you are part of the story.

We had to pick Nalani up from the AIS as she assisted at the PSSA Athletics Carnival and then we went to the Accountant. He asked for some of my books to sell at his office because he thinks my book is extraordinary and my generosity of donating the proceeds from my book to the Brain Tumour Fund is so selfless. At home I now only have 59 books remaining so perhaps that reprint will be on the cards, that is as long as there is interest in it. Perhaps every school in Australia should have one, every hospital so children my age can have an understanding of the journey they could face and maybe more bookshops would like to have it. I saw that Jessica Watson now has her book out, she is another inspirational young Australian, of course in a very different way to me, we have both though had to be courageous and determined but I think she will sell many more copies of her book perhaps even become a best selling author, she will definitely also be nominated for Young Australian of the Year.

We had running training in the afternoon, I took my knitting to work on, I did some but then my hand became painful and I had to stop, so I watched the squad running. I talked to Mum and Nalani about all the fun times we used to have when we all walked or ran while Jarrett was doing his training, they were the good old days when cancer was not part of my life.

The winds have died down this evening and as I wearily type this, I wonder what tomorrow will bring, I have my electives at school, which I am looking forward to. Please know that I appreciate the many comments that people leave and I love to hear your stories of what is happening in your lives, I feel I have made so many new, unseen friends who I feel so close to through their support and encouragement, thank you for being part of my life.

'I think we should live our life as if everything is a miracle and then encourage others to see what beauty there is even in the smallest object around them'