Friday, April 27, 2012


21st April to 27th April 2012

This week we celebrated Anzac Day on 25th April, this day marks the anniversary of the first major military action fought by Australian and New Zealand forces during the First World War.  ANZAC stands for Australian and New Zealand Army Corps. The soldiers in those forces quickly became known as ANZACs, and the pride they took in that name endures to this day.

This day is important for Australians because when war broke out in 1914, Australia had been a federal commonwealth for only 13 years. The new national government was eager to establish its reputation among the nations of the world.  So in 1915 Australian and New Zealand soldiers formed part of the allied expedition that set out to capture the Gallipoli peninsula in order to open the Dardanelles to the allied navies. The ultimate objective was to capture Constantinople (now Istanbul in Turkey), the capital of the Ottoman Empire, an ally of Germany.

It was on 25th April that the Australian and New Zealand forces landed on Gallipoli where they meet  fierce resistance from the Ottoman Turkish defenders. What had been planned as a bold stroke to knock Turkey out of the war quickly became a stalemate, and the campaign dragged on for eight long and devastating months. At the end of 1915 the allied forces were evacuated, after both sides had suffered heavy casualties and endured terrible hardships. Over 8,000 Australian soldiers had been killed. On Anzac day we Australians remember the significant sacrifice of those who had died in the war to give us the freedom we experience today.

On Saturday Jarrett competed in the annual Anzac Relays, racing in a team of four, each running 3.8km.  With determination just as our soldiers would have had, the team Jarrett was in were the first Junior Team across the line and came second overall. I was there cheering the team on and was so pleased to see them win the junior category.
Black Mountain Tower - Canberra

On Monday we, as a family went up Telstra Tower (which is also known as Black Mountain Tower), the tower rises one hundred and ninety five metres above the summit of Black Mountain and it has 360 degree view of Canberra and the surrounding rural area.  Black Mountain Tower was officially opened on 15th May 1980 by the then Prime Minister Malcolm Fraser.

Not only is it a tourist attraction, it is important as the transmitting station for Canberra television services and FM broadcasting services, and as a base station for other radio communication facilities, Telstra Tower is a key station in trunk communications for Canberra, and an important node in the intercapital broadband network. It is also important in respect of television relaying, catering for up to 5 simultaneous interstate relays as well as national regional relays from Sydney and Melbourne and relays originating in Canberra.

The tower has won two awards for outstanding design, the first was in 1979 when the Tower was nearing completion, it was for imaginative and effective use of concrete in a building and then in 1980 it won the Civic Design Award of the ACT Chapter of the Royal Australian Institute of Architects. 

Looking out over Canberra was splendiferous, I saw the Parliamentary Triangle, The National Library and Government House.  The Autumn colours that delightfully covered the city were breathtaking and whilst we have many buildings Canberra still has so much glorious bushland.  After looking at the view, we sat and enjoyed a hot chocolate whilst still being able to look out at the view.  We then went outside to the outdoor viewing deck, it was exceptionally windy and we were almost blown away but were totally amazed yet again by our picturesque city.  If you are ever visiting Canberra or are a Canberran who has never been up the tower, I would recommend it as you really can see how magnificent Canberra is. 

 I had a visit from Anna who is Tess my Starlight Wish Granter's Sister, she is lovely and when she visited she gave me a picture that Tess had done years ago for her daughter, it was done in hobbytex and is a cat.  As you would know I really love art and craft and was really intrigued and impressed with the hobbytex picture, I wonder if you can still get hobbytex, that would be something that I could do and perhaps then sell to raise funds for the brain tumour fund.  Anna also gave me another extraordinary gift, it was a gold medal and engraved on the back are the words 'Dainere Gold Performance in Courage 2012'.  I had tears in my eyes as I looked at it, so many times I have said that I am not anyone special, I have just been given a journey that I face the best way I possibly can.  Anna wanted to get a copy of a story that I wrote about Theodore, teaching children that just because you are different does not mean you should be left out.  I wrote it for Christian Living last year as part of an assessment to teach younger children a moral lesson.

On Tuesday I had physiotherapy with the wonderful Kaitlyn again, she found that down near my sacrum was twisted and again the top of my spine, so she did a gentle release on both and massaged my back then put heat on it.  My muscle in my gluts was tight so she taped it to see if it would provide some relief.  Then she surprised me with the most beautiful quilt which she had made to keep me warm in the colder weather.  She is not only a talented physiotherapist but also a talented sewer. 

My Occupational Therapist, Tom visited on Tuesday also and went over how I was going with all the equipment, I have found that some works and a couple of things don't so he took them away.  I am so very lucky to have such an exceptional therapist who listens to me and has such wonderful knowledge of what may be useful for me.

Our weather was absolutely freezing on Wednesday, I think it was a preview to what our Winter is going to be like and it looks like we are in for a long, extremely cold Winter.  It was a good day to stay indoors under a warm blanket and watch a good movie. 

On Thursday I had hot chocolate with my friend Ally and her Mum and we chatted for a while.  I really enjoyed catching up with her, she is a special friend, she always makes me laugh.  I am finding that I am becoming quite fatigued very quickly lately, so I am not able to spend too much time out with people. 

Today I saw my dietitian, she is happy with my nutrition, we have to be aware that when I have days that my pain is worse I may not be able to eat as well, so she is getting a sample of a product called 'polyjoule' we have to make sure it does not react with any of my medications.  Apparently it has no taste and you can put it in drinks or in food as it has no taste, so does not change the taste of the food or drink you are having.  She is going to monitor how I am going on a monthly basis and I am able to email her if I have any questions. 

I have done a test run to school in my electric wheelchair, it is terrific, so much more smoother than my manual wheelchair and I think I am quite good a driving it.  It will be interesting to see how I go next week back at school with all the students around, I may have to do some dodging, so that will test my driving skills.

Yes, School Holidays have just about come to an end, next week is the beginning of Term 2, I am looking forward to continuing learning about anatomy in Sports Science, Volume in Maths and Romeo and Juliet in English.  Next week I also have an appointment with my Oncologist, it is on the 3rd of May. 

May you all enjoy the week ahead, no matter what challenges you may face be sure to stay positive and have hope and you can overcome any hurdle.

Saturday, April 21, 2012


14th to 20th April 2012

School holidays are always a time to rejuvenate, discover, laugh and give your brain a break from working so hard.  I have spent time resting, visiting friends, reading, playing games and enjoying some time outdoors in the glorious Autumn weather. 

I had physiotherapy this week and it was such a relief for me as my spine had been rather painful.  Kaitlyn discovered that my lower spine has twisted slightly to the left while up the top part was to twisted to the right whilst up in my neck was to the left.  She was able to release it which provided me with some relief from the pain.  I have a new exciting exercise to do and that is sitting in a chair and having someone throw a ball to me, alternating throwing it to the left and then to the right, this is a balancing exercise.  I do my physiotherapy exercises every day, it is important to do them as they assist me to stay strong. 

An exciting event from this week was the arrival of an electric wheelchair, it is to allow me some independence and also it provides more support for my back than what the manual one I have does.  Tom, my Occupational Therapist came and showed me how to operate it, he even brought me an 'L' plate to begin with, but I was not on that for very long, I quickly progressed to my 'P' plate.  The wheelchair is operated with a joy stick, similar to one you find on a game controller, then there is also a speed button, it goes from very slow to faster.  Jarrett and Nalani also got to have a go on it so that they could experience how it all worked and how to operate it, in case I ever need any assistance. 

My Occupational Therapist is an extremely inspiring person, he ran in the Canberra Marathon, he told me that at the 36km point he did not think he could continue but he thought of me and that gave him the determination to continue and finish.  I was so excited for him, running such a long distance would take its toll on a person and would take such courage and determination.  I think competing in a Marathon is very much like battling cancer, it can be so difficul, yet getting to the end of the race would be so rewarding. Just like beating cancer would be like crossing that finish line after going such a long distance.  So you can imagine that I was so honoured, humbled and quite emotional when he wanted me to have his medal, I will treausre it and whenever I look at it I will be inspired and determined.

Finally my Wests Tigers won a game and they won so convincingly, beating the Panthers 30-0, I was so thrilled and hope that they will now be on a winning streak and forge their way back up the ladder just as they did in 2005. 

It was our oldest cat Paris Birthday on 20th April, she turned 13, the vet told us that she is now a geriatric cat , as with people, old age brings a number of changes for older cats.  Old cats are often less active and their muscle tone tends to reduce, frequentlyy older cats suffer from a poor appetite as their senses of taste and smell often deteriorate, they have reduced vision and hearing, they often have an increased water requirement due to reduced kidney function, but reduced mobility and reduced appetite may result in reduced water intake, putting them at risk of dehydration,  with increasing age their immune system can become less efficient, leading to increased susceptibility to infection, they tend to sleep less heavily but more frequently and  they often have poor coats. Paris is keeping well at present and just lately she has started sleeping on my bed all the time. 

On Saturday Jarrett is racing in the Anzac Day Relays at Stromlo, it is supposed to be a lovely day and it will be terrific to watch him race. The race is not on the grass course it is on the bicycle criterion course, so it will be run extremely fast.  Last year the team that Jarrett was in won the relays, so he is hoping they can do it again.

I hope that the second week of the holidays will not go too quickly, we are planning to go up Telstra Tower to look at the spectacular view of Canberra so hopefully the weather will stay perfect for that adventure. 

Thanking everyone for their encouraging comments I appreciate them all.  With my school work load I have not had much time to work on fund raising for the Brain Tumour Fund but I am hoping that I will be able to work on a project over the next few months so that I can continue to contribute towards helping towards research to help find a cure for this destructive cancer. 

Saturday, April 14, 2012


7th to 13th April 2012

This week heralded the last week of Term 1, how quickly those ten weeks have gone and I have reflected on all that has happened in that short ten week period of time.  I had my 14th Birthday, I was diagnosed with a relapse in my spine of my medulloblastoma, my family and I had a terrific time at the Canberra Show, in the ACT Junior Championships I received a Gold Medal in Javelin and a bronze in both Discus and Shot put, I have had five sessions of radiotherapy treatment in Sydney, my Uncle James took me for a special ride in his classic mini and I blew the musical horn all the way up our street, we had a visit from Nana and Pop,  Mum, Nalani and I competed in the Women and Girls Fun Run and I achieved a quicker time and higher placing and with Nalani and Mum's assistance I competed in the School Cross Country and was the 1st AWD Athlete as well as  that I came 7th in my age group.

I have enjoyed my subjects at School and even though I have been in pain and often exhausted I have managed to do well in those subjects and coped with the demands of the workload.  In English this week I worked on some persuasive writing on that too much money is spent on toys and games.  In Maths we have now moved on from probability to perimeter, area and volume and in Sports Science we are now doing work on the human body systems, we looked at the skeletal system as well as the muscle system. 

In Assembly this week I was both surprised and  extremely honoured to be awarded one of the Senior School  end of Term Character awards, peers chose who they think has made a special contribution to the school during the Term.  I got to sign my name in the special book that is kept at the school and has all the names of the students throughout time who have won it. 

Health wise I have had some difficulties this week with pain and tingling down my arms but this has been assisted with physiotherapy, heat, pain killers, rest and massage.  Some days are more difficult than others but I always wake up and face the day with a smile on my face and a positive outlook.  I remind myself that there are people that are in so much pain who can not get up and those who for whatever reason can not move without assistance.  How lucky am I to be able to go to school, do my sport and enjoy the extraordinary beauty of the world outside.

I have my fingers, toes and everything else crossed this week that my West Tigers will win their game against the Panthers.  In footy tipping Nana is ahead of Pop by one and ahead of me by two but that could change if Pop or I have a good week.  I already have two right this week, as I chose Broncos and Dragons so hopefully my other picks will all be winners.

Next week I have something exciting to look forward to, my Occupational Therapist, Tom has organised an electric wheelchair for me, this will give me more independence and assist me to use less energy so I will hopefully be able to do more in a day than I can now. 

May you all have the most splendiferous week and remember to treasure every rainbow moment that occurs in your week, take a picture of it in your mind and keep it there for days that seem difficult. 

Saturday, April 7, 2012


31st March to 6th April 2012

Wishing everyone a very Happy Easter, hope it is a time you fondly share with your family and friends and that The Easter Bunny brings you your favourite chocolates.  What is the real meaning of Easter though?  Well, Easter is a time to celebrate the promise of life in the face of death. Easter celebrations also reflect on peace and forgiveness which has come out of aggression. It is also a time for thinking about suffering, injustice and hardship.  The giving of eggs is often a favourite part of Easter, the eggs symbolise new life and are traditionally eaten on Easter Sunday.

My week has been extremely busy, challenging, tiring yet fulfilling.  On Sunday Mum, Nalani and I were part of the Women and Girls Fun Run, it was a 5km course run the course went from Stage 88 in Commonwealth Park to just past the Carillon and returned on a traffic free loop through Commonwealth and Kings Parks.  The weather was absolutely perfect for the event and when our Chief Minister started the race, we flew off.  There was a huge field of 677 and some of the course was a little tough and rugged however we were fortunate that most of it was on path.  The wheelchair rattled as we picked up quite a speed, especially on down hill runs.  I pushed myself in the wheelchair along the path that ran along Lake Burley Griffin while the elegant black swans watched on.  When we came to the final one kilometre both Mum and I were relieved, Nalani had gone way ahead of us.  Coming down the hill and across the finish line I knew that we had achieved my goal of beating my time from last year.  In fact we had really done well 42:59 and 415th place, last year we got 49:47 and came 629th so this year we did exceptionally well.  Nalani was awesome, she came 94th in a time of 27:30, that put a huge smile on her face because it was her first real race after her knee surgery.

With a wonderful achievement also came quite a bit of pain for me, I knew that this was possible, but competing in the event was important to me.  I had to rest and take extra pain killers as well as try other alternative pain relief methods like heat, baths and massage.  Throughout the week the pain came back down.  I have constant pain that I rate at around four out of ten every day, it is like my tinnitus in my ears, constantly there and I guess you become used to it. 

At School we have done practise for NAPLAN, it was first started in Australian schools in 2008, it is  the National Assessment Program - Literacy and Numeracy (NAPLAN) . Every year, all students in Years 3, 5, 7 and 9 are assessed on the same days using national tests in Reading, Writing, Language Conventions (Spelling, Grammar and Punctuation) and Numeracy. 

I had physiotherapy this week and was so pleased because I was still rather uncomfortable after the Fun Run and Kaitlyn was able to work on my back, neck, shoulders and legs. Thank goodness she was able to give me some relief, she must have magic hands.

I also saw my Paediatrician this week, he talked to me about how I was feeling, how my pain relief was going and what I had been doing.  He was really excited about my achievement in the Fun Run and thought I was really inspirational.  He is seeing me again next month after I have seen my Oncologist again.

Thursday was another huge day for me, it was the School Cross Country this was another goal which I had set myself.  The morning started off overcast and foggy, but by the afternoon when it was time for my event, the skies were a brilliant blue and the sun was streaming down.  I am in the 14 year girls, we had to do 3km, the 15 year girls were also running with us.  I had Mum and Nalani there to assist me with the wheelchair, as the gun went off we flew down the course at top speed, actually I think Mum went out a little too hard.  Nalani took over pushing and we completed our first lap in lightning bolt time, only two laps to go,  on the second lap Nalani and I started to leave Mum behind, we were too quick for her.  Two laps completed and only one to go, Nalani virtually sprinted, we met Mum up the hill and she took over, we did not have far to go to the finish line and Nalani and Mum both pushed me across the line. I am not sure of the official time but we did it in under twenty minutes.  I won the AWD classification and got a 1st place blue ribbon, I came 7th in my age group and 10th in the 14/15 years girls.  Theodore with his green scarf on, my house is Guraguma which is green also won a ribbon for the first bear across the line. 

The Course was much bumpier than the one for the Women  and Girls Fun Run and by the end of the race I was in trouble with pain and felt very ill. However the fact that I had done it and done so very well put a smile on my face despite my pain.  I wanted to stay to watch Jarrett run, I love to watch him, he is such a splendiferous runner.  When the gun went off for his race, he flew off at super sonic speed, he had to complete 4km, he lead from the beginning to the end, getting further and further ahead of the other runners in his race.  He won in a record time of 12:32 and also won a 1st place blue ribbon. 

My pain continued and I needed to take extra pain killers that night and the next day, I found I had difficulty moving my neck and back at all and needed help to eat and turn.  I was not able to walk because my legs just crumbled and my arms both tingled from the top into my hands.  However with the pain killers, heat, a bath and massage I began to improved and by Friday night although my pain level was still higher than it normally is, it had eased and become more bearable.

Good Friday in Canberra, the weather was again perfect, which is so unusual because normally it is very overcast, raining and sometimes we even get a fog.  I had a Maths assignment to work on so I did some on that but because my energy had been sapped from the Cross Country, I dozed off whilst typing on the computer. 

My poor West Tigers, they again lost, that is five games in a row and we are sitting on the bottom of the NRL ladder.  I hope that good luck will come there way and they will be able to win a game and gain some confidence back.  Nana is winning the footy tipping and then Pop and I are equal, it is early days yet though and that lead could change as the season progresses. 

A quote from the Bible especially for Easter .

John 11:25, 26
'I am the resurrection and the life.  He who believes in me, though he may die, he shall live.  And whoever lives and believes in me shall never die'.