MERRY CHRISTMAS

22nd to 28th December 2012

May the gift of love, the gift of peace and the gift of happiness not only live in your heart at Christmas but throughout the coming year.  Wishing you all a very Merry Christmas and in 2013 may the good times and treasures of the present become the golden memories of tomorrow and may your year ahead sparkle with moments of love, laughter, contentment, joy and goodwill towards others.

As you all know I have been working hard during December working on my final fund raising event for the year, my spectacular Christmas Light Display. 

It was a lot of work putting everything together especially the lights, the entertainment and ideas to make it an extraordinary experience for those who got to see it. 

 

I am so very excited to let you all know that due to the splendiferous generosity of those in the Community my light display raised a grand total of $2126.95 which has already been sent to The Sydney Children's Hospital Foundation Brain Tumour Research Fund.  It was an amount beyond my expectations and I feel so touched by those who donated and together we will make a difference and find a cure for this horrendous disease one day in the future, so a huge thank you.  I have included some photographs throughout this Blog entry for you to enjoy.

Christmas has been such a magnificent time but it has also been a tiring time for me especially with my pain, which torments me each and every day.  But having family and friends around who care so much about me and make me smile helps ease that pain just  a little.

I did some baking on Christmas Eve making some star cookies, absolutely delicious chocolate Christmas Tree cup cakes which had a very special surprise in the middle - a strawberry and very moreish coconut ice.  At night we watched some of the Carols by Candlelight on television before leaving goodies for Santa and the Reindeer and heading off to bed.

Christmas Day was quiet and the weather was also very unseasonal, so we spent much of the day playing Sydney Monopoly which I received as a gift from Tess.  Jarrett was the winner on the day, he played very strategically and edged out a very determined Mum, I came third, Nalani fourth and poor Dad was out quite early.

On Boxing Day we had a second Christmas with Nana and Pop coming over and we opened presents on that day also and having a lovely barbeque lunch together. 

These last few days have been lazy ones, resting, watching some DVD's that we received as Christmas gifts and reading books that we also received as gifts. 

With this year almost over, I have thought back to all that has happened; we celebrated Nalani's 18th Birthday, I had my 14th Birthday then found out that I had tumours on my spinal cord which were incurable,  we went to the Canberra Show as a family, I had some radiation which was so quick compared to my first lot, I had my second book Theodore and Friends - Theodore is Left Out published and all proceeds went to The Sydney Children's Hospital Foundation Brain Tumour Research Fund, I wrote a special list and have got to do things like go for a ride in a classic mini, have a Hummer Ride, compete in the Women and Girls Fun Run achieving a better time and place than the year before, do the School Cross Country in my wheelchair, go up Black Mountain Tower and look out over my splendiferous city, compete at High Noon athletics competitions, have Christmas in July, saw Theodore go Rock Climbing, given Olympic and Paralympic Souvenirs, gone to the Zoo and Aquarium met a Cheetah, fed white lions, tigers and a bear, had an extra special Ferry Ride and Party, received a gold medal from my oncologist, went to a Cat Show, had an asteroid named after me, competed in five events at the school athletics carnival and had a Christmas Light Display. 

I feel that I am so blessed to have experienced these amazing things, in some ways I think I have done more this year than what some people may do in a lifetime, that is why I think that everyone should go out and make the most of every single day of their lives because you don't know what is around the corner or how much time you have on this Earth, so please don't waste it. 

This year I have also continued with what is so dear to my heart and my greatest dream and that is to contribute to helping finding a cure for paediatric brain tumours, I so passionately believe that no children in the future should have to suffer as myself and many others have with this absolutely hideous disease. 

Next year I will continue with my effort to continue to raise awareness and funds, every dollar does count and I know that it is so greatly appreciated by those doing the research.  Helping others gives you a sense of worth, hope, courage, love and lights your heart. 

Another huge thank you to everyone who follows my Blog, to those who leave such inspiring and caring messages, you all really make a difference to my life, giving me strength, courage and determination each and every day.
 

ALMOST CHRISTMAS

 

15th to 21st December 2012

Only four days until Christmas, what does Christmas mean to you?  To me it is about love, laughter and giving to others.

That is why for my final fundraising event of the year for The Sydney Children's Hospital Foundation Brain Tumour Research Fund, I decided to bring joy to others at Christmas as well as raising those so desperately needed funds for research by having a Christmas Light Display.

I organised exactly how I wanted the display to look with a light nativity with an Angel watching over and a colourful flashing star.  I have my special wooden decorations; Mr and Mrs Claus and some very lovable elves and Dad and I even made our own Santa's Workshop to complete the scene.  Then on the rooftop is a Santa in his sleigh and a Santa stuck in the Chimney (I think he had too much milk and cookies).  Then there are four reindeer, a train, a Santa with stars, a Santa coming down the chimney, a Merry Christmas Sign, presents, a flashing tree, a glittering Santa, a small sleigh, Candy Canes, optic fibre trees and more flashing lights

I have even had buskers, a bubble machine, nail painting, special little treats and gifts and even Santa, Mrs Claus, elves and an Angel have appeared.

My goal has been to raise at least $500 for the fund, the lights finish on Christmas Day and then I will find out the grand total.  I must thank Dad, Mum, Nalani, Jarrett, Monique, Annie, Sarah, Sue, Anna, Tass, Gloria, Carla, Steph, Emily, Tess, Sarah M, Dianne, Alex, Kay, Gail, Jake for their contributions as well as the many people who have made donations.  It is because of your Christmas spirit and giving that we can contribute to research to one day find a cure for this hideous disease.

My favourite thing about my Christmas Light Display is seeing the joy on people's faces who have come to see it, their joy has lifted my spirits and made me feel that I have made a difference to their lives.

On Sunday I had a little concert for my family, every year I have done it for my family as a gift for them.  This year I sang some of my favourite Christmas Carols for them.  They really enjoyed it and gave me the hugest hugs at the end. 

I had my weekly physiotherapy appointment with Kaitlyn, it was so wonderful to have her work on my painful spine and also my sore right heel using the ultrasound.  She has truly been my guardian angel this year, just as Rhiannon was to me before she left Canberra. 

Later in the week I was lucky to have morning tea with Imogen, she lost her son Benny to a brain tumour in 2009 if you would like to read about his story you can go to this website http://www.bennywills.org/, they are doing fundraising for brain stem tumours.  She has a beautiful new baby boy, Sam and I got to meet him, he is just so gorgeous and he did not want to let go of my finger. 

Today Tess came to visit me, it is always so splendiferous to see her and her cuddles are so lovely and she always makes me smile.  My Nana and Pop also arrived today, it will be so magnificent to spend time with them over the Christmas period. 

Apart from pain killers, physiotherapy and heat packs, hugs are a wonderful way to take away your pain.  I feel so fortunate to have people who hug me and help take some of my pain away.

Over the next few days it will be a time of seeing other family and friends and sharing this wonderful time of the year with them.  

Wishing my many followers a very Merry Christmas may it be blessed with love, laughter and precious memories and may your New Year be one that you will seek to achieve goals, don't be afraid to try something new, or to reach out and help others. 

 

 

SCHOOL FINISHES FOR 2012

7th to 14th December 2012

With only eleven days to Christmas it is a busy time, a time where we sometimes forget the important things in life in the rush to shop.  If we stop for a while, remember to smile and spread joy.  If we give to others rather than expecting to receive then our hearts are set alight with love and joy.

My last few days of school this week were spent taking part in the Medieval Activities, I made a dress, using a dress I already had and adding long flowing sleeves and an over skirt, I made a special headpiece made of wool, flowers and ribbon.  On Tuesday we had a special assembly where all the groups came together and showed the rest of the Grade what we had done.  It was a special time seeing how talented people are and I also learnt some new information about Medieval times. 

Our Medieval day ended with a special luncheon, a spit roast with meat, salads and roast potato and pumpkin.  I think it was a magnificent way to finish off what has been a challenging yet totally enjoyable year. 

Presenting the Pathfinder Award at the Middle School Celebration was such an honour for me, I think that the person who won it was very deserving and will set an example to others to forge a path in life and think of others to make a difference.

On Monday night it was our Senior School Celebration, it is a night where the students from Years 9 to 11 come together to recognise fellow students achievements.  You can imagine my total surprise when I was awarded not one but two awards.  One was a subject award for English, which I was so thrilled about because I had worked so dedicatedly in English especially in my Romeo and Juliet project  and my speech about A Bridge to Wiseman's Cove, which I achieved 100% in both.  Then I was just so humbled, surprised and honoured to be awarded a special award, only one student in Senior School receives it each year.  It was the award for Personal Achievement.  The Head of Senior School gave a speech before awarding it, he mentioned how I was so dedicated to my studies, how I had represented the school in sports, continued to contribute to the School and community and showed so much courage and determination despite adversity.  I actually felt just a little embarrassed about receiving the award, I am sure that there are other students in the School who are far more deserving than I am.  I think I have said this many times, I have been given a journey and I just try to remain positive and make the most out of each and every day, it is just what you do when you face something like this. 

I was so very excited though to see Jarrett also receive two awards, he got an Academic Excellence in PE and then an application award for Mathematics.  He was also surprised by his awards, but he too has worked really dedicatedly this year, I am so proud of him. 

The Principal in his speech on the night started by saying "Never, never, never give up", he then went on to talk about Neil Armstrong and his determination and courage in his life and what he was able to achieve.  Every person should always believe in themselves and definitely never give up especially on their dreams.

I had physiotherapy and again Kaitlyn, who is has worked so tirelessly to try to assist me with my pain this year, worked on my spine, it has been extremely painful and causing me so many problems.  She is able to provide some relief and I am so grateful to her for that. 

I also had an appointment with my paediatrician, he too has been so wonderful this year.  He is very supportive and is always there to listen and try to help me.  I have to see him again on 8th January, he is going to keep a close eye on me now. 

Tonight I have Interclub again, last week despite been sore, competed in discus and shot put and it was so worth it because I achieved a personal best in discus throwing the 350g discus 6.36m and then throwing the 1.5kg shot put threw it 2.22m.  Having the lighter weights makes it a bit easier for me and does not hurt my spine as much. 

Next week will be splendiferous because my Nana and Pop are coming to spend some time over Christmas with us and my Uncle James and Aunty Kate.  I always love to see them and give them huge hugs, I think Grandparents hugs are very special. 

Last Christmas we went to Queensland to be with them, at that time I never expected that my journey would take another twist.  I remember having back pain when I was there but never expected to hear the devastating news I did.   I have asked Santa for a surprise this year for Christmas, I secretly wish it was a magic wand to take away my pain and make me better, but I don't think there is one of those anywhere.  So I will continue to find an inner strength to try to keep fighting, hoping a cure can be found.

Most days now I find I am very weary and have to have a sleep, rest helps your body to recover and continue to fight.  I have found that I have to take ondansetron more often to help cope with nausea, it works very well, which is a good thing because I hate been sick. 

I will have to start looking through the cook books and look for some delicious treats to make for Christmas, I am already going to make a gingerbread house and coconut ice. 

To anyone who is travelling during this time, stay safe and alert and don't rush to be where you have to be, take your time and enjoy the beautiful landscapes around you. 

With many thanks again to all those who read my Blog, I truly appreciate your support and often read back on the many comments to give me strength and courage.

THE SECOND LAST WEEK AT SCHOOL

1st  to 7th December 2012

I think that somewhere over each of our rainbows, the skies are always blue, the sun is continually shinning and that all our deepest dreams we dare to dream really do come true.

With exams over at school we had normal classes for part of the week and then we began our special Medieval activities.  I did Medieval Fashion, we learnt about the type of fashion that the upper and lower classes wore, what men and women wore, what the clothing was made from and what accessories they put with their clothing. Did you know that Medieval clothes provided information about the status of the person wearing them. The clothing and fashion during the Medieval era of the Middle Ages was dominated and highly influenced by the Kings and Queens of the era. Only the wealthy could dress in fashionable clothes.

After we did our research we were given the opportunity to design our own fashion.  I thoroughly enjoyed doing this as I really love beautiful dresses.  Then using what materials are available at school and only hand sewing we will be making our designs next week.  At a special assembly next week all the groups will then be doing presentations, there are groups doing art, some doing a play, some working on games, buildings and weapons. 

On the weekend I met with my friend Ally, we had a photograph together with Santa.  We had wanted to do it last year but he had been on his lunch break.  It was fantastic doing that with Ally, she has been a really terrific friend to me.

Then on Sunday I was humbled by having the Andante Andante Abba Choir perform for me and my family.  They sang a repertoire of Abba songs which had us tapping our feet.  Then they sang my very favourite Christmas Carol, Silent Night.  Their music filled my heart with joy, the gift of music is so splendiferous.  This is a link if you would like more information about the choir.  http://www.andanteandantechoir.com/

I also had my physiotherapy appointment with Kaitlyn, this time she worked on my foot and right knee which have been very painful.  I wanted them to feel more comfortable as I am hoping to throw discus and shot put at Interclub on Saturday.

It is Middle School Celebration tonight and I have been asked to present the Pathfinder Award that I won last year to the student who has won it this year.  I remember how honoured I felt by winning that award last year and I have tried to continue to live up to that award by continuing to blaze a trail not only in my education but also trying to help and inspire others.

We have our Senior School Celebration on Monday night, it should be a very special night celebrating the achievements of the year.

You may be wondering why I am typing my Blog in larger font, it is because it is much easier for me to see, when the font is smaller I have to strain to look at it and I then tend to also put my neck forward and strain it and anything I can do to avoid straining and having pain is helpful.

My pain continues to be my enemy, some days are a little better than others but sometimes I have to fight constantly, I fight it with trying to be brave and positive, my pain killers, heat and massages.

Remember to look for your rainbow, believe in yourself and never let go of your dreams. 

EXAM WEEK

24th to 30th November 2012

All the revising and studying ended this week as it was time to begin exams.  Often no matter how hard you have studied when you see that exam paper in front of you and read the questions you start to panic.  However once you start to answer the questions and all you have learnt, you can picture in your head and transfer onto that paper you grow in confidence.  We were fortunate in Maths to have a formula sheet that we could refer to and in English we could have our novel with us, so we could look through it to back up our analytical essay with quotes.  Sports Science was just remembering but because I really love that subject and always hear Nalani and Jarrett talking about different things they do in their classes I can remember so much.

Jarrett and Nalani have also been studying with dedication as they too have been doing exams. They have both done extremely well in their exams.

Now with exams over we head into the last couple of weeks of the school term.  Although we do have some normal classes we are also doing some exciting events.  We are having a special Medieval Extravaganza, we have a choice of activities to do and it will all culminate in a special assembly presentation and medieval feast.  I have chosen to do Medieval Fashion, I think that I am really going to enjoy doing this.  When I was in hospital having treatment I designed some dresses for my CNC Nurse Liz and she really loved them. 

Other events I have coming up are presenting the Pathfinder Award I won last year to the student who has won it this year.  When I won that award last year, I was so honoured and humbled to receive it.  I have tried to live up to it this year by always trying my very best in all my studies, trying to inspire other students by competing in the Cross Country and Athletics Carnivals, writing and having published another book which had an important message and of course my passion for fundraising for the Brain Tumour Fund, one day maybe what I have done will see a cure found.

I also had physiotherapy this week, the wonderful Kaitlyn worked on my neck and spine, with exams, my pain has increased, but I do try to remain as brave as I can be. 

Yesterday and today have been incredibly hot in Canberra, with temperatures well over thirty degrees.  The heat really knocks you around, but I make sure I am keeping up my fluids and resting.  The unfortunate thing with the hot weather is that I am unable to use my hot water bottles to assist with pain relief. 

There is no Interclub this weekend, which is a good thing because I am just too tired and sore to compete, hopefully I will be feeling a bit better the following week to compete.

Wishing everyone a splendiferous week one that is blessed with every happiness and keeps you smiling because your smile brightens the lives of those around you.

 

EXAMS DRAW CLOSER

17th to 23rd November 2012

This week I would like to start with a quote by Mother Teresa. "Everytime you smile at someone, it is an action of love, a gift to that person, a beautiful thing.”  I love to smile, it keeps me brave, strong, it makes me feel as though I am giving something special to others.

Again my week has been extremely busy and just a little stressful especially at school as we are in the final stages of preparation for our exams which are next week.  There are so many things to remember and if you get a little nervous sometimes no matter how hard you have worked and studied, the nerves can make you forget things.

I had my physiotherapy appointment again this week and Kaitlyn was able to provide me with some relief in my spine and my sore right heel which she used ultrasound on.  Then to finish off my appointment it was time again for those wonderful heat packs, I had three of them and they were so soothing, I often close my eyes and have a snooze whilst I have them on. 

Today I was delighted to see my Occupational Therapist Tom, he always has wonderful ideas and today he had a special magnifier called PageBrite, it means that I can hold it over small print to enlarge it.  I don't have to strain my eyes then to look at small print on sheets and in books.  Tom, like Kaitlyn is like a guardian angel for me and I feel so blessed to have them both helping me to be more comfortable from day to day.

I have been given a very splendiferous task, that is to look after 'Flora' the fund raising bear, she is beautifully hand made and is magnificent to hug.  She was an auction item at a fund raising event for Brain Tumours a few weeks ago.  My wonderful friends Tass and Gloria won her and I am taking extra special care of her, she is going to go to another home when there is another fund raising event. 

Next weekend we enter the month of December and then Christmas will be ever so close, sometimes in the rush of the season people forget the real meaning of Christmas, this may help people remember. 

The green colour of the fir tree  which remains green all year round, depicts the everlasting hope of mankind and all the needles point heavenward, making it a symbol of people's thoughts turning toward heaven.

The bright shining star reminds us of the heavenly sign of promises long ago. God promised a Savior for the world, and the star was the sign of fulfillment of his promise.


A candle symbolises that Christ is the light of the world.


A wreath symbolises the real nature of love. Real love never ceases. Love is one continuous round of affection.



Santa Claus, symbolises the generosity and good will we feel during the month of December.


A holly leaf  represents immortality. It represents the crown of thorns worn by Jesus, the red holly berries represent the blood he shed.


A gift represents the gift God gave to the world, his son Jesus. Every child is a gift to their family.

A candy cane represents the shepherds' crook. The crook on the staff helps to bring back strayed sheep to the flock.


An angel is special as it was the angels that heralded in the glorious news of the Savior's birth. The angels sang Glory to God in the highest, on earth peace and good will toward men.


Lastly a bell with its soft twinkling sound, symbolises guidance and return when lost.

   

May you all have a magical week, keep smiling and sharing your gift to others.

ACT SCHOOLS CHAMPIONSHIPS

10th to 16th November 2012

The sun is shining brightly in the clear blue crystal sky, the birds are chirping happily and the garden is alive with an array of fragrant blooms.  Each day we should wake and even if we do not feel the best, we should take the time to find something or someone to appreciate. 

My journey with this insidious disease, cancer has made me appreciate all the little things that are around me, to think about and give to others, believe that there are those that are so far worse off than I am and that I am lucky and to never, ever give up hope.

This week school has just been about revision in readiness for exams which commence on 26th November.  To remember what you did way back at the beginning of Term 3 is not always easy but if you take the time to read over all the notes you have taken, through the text books and over assignments it makes it much easier. 

I had a visit from Wendy my CNC nurse from Sydney, who was checking to see how I was doing.  She does not just talk about how I am medically, she takes the time to listen to me and look at what I have been doing at school.  She loved looking through my Romeo and Juliet Assignment which she had seen as I was putting it together, she seemed so amazed by what I had achieved and knew just how much work I had put into it. 

A visit to physiotherapy was also part of my week.  Kaitlyn worked on my neck and shoulders, which were extremely painful.  Luckily there are physiotherapists in our society, without them so many people would not be able to function in their day to day lives.  At the end of my session I had those wonderfully warm and soothing heat packs on my neck, back and legs. 

Me throwing the 400g javelin

The most splendiferous day this week though was on Tuesday when I proudly represented my school at the ACT Schools Track and Field Championships.  I competed against other male and female students from all over Canberra who are also classified as athletes with a disability. 

My first event was discus and following my classification review I am now throwing a lighter weight discus, it is now only 350 grams rather than 750 grams which just took too much effort and energy from me.  I was so excited when I threw 6.87m which was a personal best.  It was even more special because I had Mum, Dad, Jarrett, Monique and Anna watching me throw. 

Then it was time for javelin, the weight of the javelin has not changed as 400 grams is the lightest.  I threw 4.12m which I was very pleased with. After the javelin it was shot put, my new weight for that is 1.5 kg, it used to be 2 kg.  It actually did not feel that much different but my best throw was 2.18m, it has been a long time since I have thrown over 2m, so I was ecstatic. 

Standing to throw is ultra difficult for me, my balance is so shocking and having the extra weight of the implement makes it tricky, I have often fallen, been very shakey and had wobbly legs, but you can't give up on what you really love. 

At the end of the competition ribbons were awarded, when you are an AWD athlete you are not in an age group, you are against everyone else who has a disability classification and they vary.  So you can imagine how totally excited and humbled I felt when I received two green third place ribbons for both my discus and javelin. 

Jarrett also competed at the Championships, he was running of course, he was representing the school in the 3000m, as he ran so elegantly and skillfully around the track seven and a half times, I was there cheering him on and so excited for him when he was the first 17 year boy across the line and he also achieved a season personal best.  He received a blue first place ribbon, which was terrific for him after his run of injuries and asthma, he truly deserved it.

For me competing had a downside and that was the excruciating pain and tiredness that I suffered with for the next few days, but to be able to do what I love so much and my fantastic results personally and for my school made up for it.  I want to keep competing for as long as I can, I do not want my cancer to stop me from doing what I love.

Unfortunately when I had my classification review, they could not allow for me to compete in a wheelchair, as there are certain rules they have to follow, so my dream of feeling like running in a race won't happen in competition form, but I am sure I can find another way to feel as though I am running again. 

Jarrett and Nalani both have exams next week they are busily studying, I am sure that they are going to do extraordinarily well as they are dedicated and always work hard. 

At school we had a special fund raising event in memory of Olivia Lambert, who lost her battle with neuroblastoma this year.  It was a silly sock day, I hope that they were able to raise many funds, as neuroblastoma is another childhood cancer that is horrific and so devastating.
www.olivialambertfoundation.org.au and olivialambert.com.au

Thank you to the many people who have made donations to The Sydney Children's Hospital Foundation Brain Tumour Research Fund and those who have supported any cancer fundraising, maybe one day all cancers will be able to be cured. 

A special thank you to Vanzwan Accounting for having their very special golf day, the generosity, support and love you have shown towards me and my family are truly and deeply appreciated and so humbling.

Wishing everyone a terrific and magical week, may your days be filled with finding those special little things that make you smile.

 

 

GETTING READY FOR EXAMS

3rd to 9th November 2012

Today I found this quote by Henrik Ibsen, I think it is simple but has a powerful message and as we are heading into an extremely busy time of the year, it is a quote that may make us stop and think.  'A thousand words will not leave so deep an impression as one deed'.  To add my own little words to the end, I think that the deed would be one of kindness that comes from the heart and is done for someone less fortunate. 

My week has been busy again at School, we are in full preparation mode for exams, it is a stressful time, one where we have so much revision to absorb and remember.  The marks we achieve in our assessments and exams in Year 9 go towards our Year 10 certificates, so it is important to do our very best and it also teaches us good study skills for our future schooling. 

Last Friday I threw the discus and javelin at an Interclub Meet, the weather was rather chilly and a breeze came up during the evening and it made me think we were heading back into Winter.  The combination of the colder weather and being so tired from School, I did not achieve any personal bests, however I still enjoyed myself because I was out there having a go and that is what it is all about.  It is those people who do not get out there and try because they don't think they will do any good, or they just could not be bothered that are missing out and I feel sorry for them.

Nalani threw well achieving a personal best in discus for the season and Jarrett ran a fantastic 1500m also achieving a season personal best.  It is always so special to all be there competing and cheering each other on.

I was so fortunate to have a short visit from Tess, my Starlight wish granter, she was in Canberra and wanted to spend some time with me.  She always lifts my spirits and keeps me positive and again I am grateful that through the misfortune of my disease, I have met some of the most extraordinary people and so I consider myself lucky. 

As always I had my physiotherapy appointment with Kaitlyn who is always there to assist with my pain and discomfort.  This week she worked on my right foot which was just so terribly painful, then she also worked on my lower back.  After my lovely massage and some ultrasound therapy it was then time for those magnificent heat packs which by now you all know how much I appreciate. 

This week there is no Interclub competition but I am having my classification reviewed.  you see I am classified as an AWD T/F36 athlete, many cerebral palsy athletes are in that classification.  However, this may be the wrong classification for me now, so you have to be reviewed to see if you need to be classified differently.  One of the officials thought I was more like a 34 or 35, I certainly can not run and if I received on of these classifications I may be able to compete in track events in a special wheelchair and may be able to use a special frame to throw.  Just being able to compete is so important to me and if I am classified differently it could mean that I can also do track events, that would be so splendiferous as I used to love to run before I was diagnosed with my brain tumour. 
 
Sometimes because of my pain, I feel very nauseous, it is a terrible feeling, but I am fortunate to have medication to assist with it, it is called Ondansetron and it relieves that horrible feeling and stops me from vomiting.  This week I have had to take them a few times, I think it is a combination of my pain and also how tired I am from school.

There are only 45, yes 45 days until Christmas, can you believe it, I think my greatest Christmas wish would be for a cure not only for brain tumours but for all cancers to be found, then no one or their families would have to suffer.  I will continue to raise awareness and funds for brain tumours for as long as I can and maybe one day my wish will come true.

A PERSONAL BEST IN JAVELIN AND HECTIC AT SCHOOL

27th October to 2nd November 2012

I found this quote recently and really loved it, so I wanted to share it with you all  - "The best part of life is not just surviving, but thriving with passion and compassion and humor and style and generosity and kindness.” This was written by Maya Angelou (1928 - ). I think it sums up what I think about life and what we should do in our lives because none of us know how much time we have on this earth so we must make the most of each and every day.

Well, here we are in November, twenty four days until Year 9 exams and only fifty three days until Christmas.  Where has the year gone? 

This week for me has been so dreadfully hectic, school is just so incredibly intense, we have had so many assignments due in, as well as in class assessments, then we have to begin to study for our exams!  I have to say that any normal healthy person is finding it quite a struggle so for me, who is not well, it is twice as difficult but again I am looking at it as a huge mountain that I intend to successfully conquer. 

In English this week we have been listening to speeches based on the novel 'A Bridge to Wiseman's Cove', it is not easy to get up in front of the entire class and give a speech, I think everyone is extraordinary just for doing it.  I think everyone was really pleased when they had finished, they all seemed to breath a sigh of relief, including me.  I was so pleased to deliver mine, I had taken a different approach and was not sure I could pull it off, but I did.  I was frustrated though because I have been having issues with my ears, you see they keep popping and when that happens I can not hear myself speak, it is awful and then I either become louder, quieter or slur words.  When I was doing my speech my ears popped on my second palm card, I tried to ignore though and managed to finish I just hope it was not too noticeable.

In Maths we are continuing our work on Consumer Maths, we have been looking at gross and nett income, tax, superannuation and deductions and have been working through problems to do with those.  I am absolutely loving this unit, it is so practical in everyday life and I find it very easy to do, I wish our exams could just be on it. 

Sports Science has been interesting because we are focusing on skills development and we have also begun or revision for the exams.  The class had to devise a lesson plan to coach children in Years 3 and 5 on how to strike a ball.  I chose to do mine on striking a soccer ball, because I used to play soccer before my brain tumour put a dramatic stop to me doing that.  We had to come up with unique ways to help them learn and to also make it fun.  This is something that I also enjoy immensely, however I am not able to partake in the coaching as I am unable to demonstrate the skills required. 

I am so fortunate that I have my sport of throwing, on Saturday I competed in another Interclub Meeting, I threw the javelin and then the shot put.  In javelin I achieved a season personal best of 4.76m and then in shot put I threw very close to a season personal best of 1.96m.  When I am throwing, that is a time that I feel almost like everyone else. 

I had my regular physiotherapy appointment with Kaitlyn, as you all know I always look forward to it.  She worked on my neck, we thought that perhaps my ear popping could have been related to nerves pressing there.  Unfortunately though despite Kaitlyn doing a fabulous job of making my neck less tight, my ears were still popping.  I also had those delightful, heavenly heat packs on my neck, spine and legs.  I could have lied there all day enjoying that heat relieving my pain.

We have had some of the most glorious Spring weather this week, apart from yesterday when we experience a cool change with gusty westerly winds and some showers.  Our roses in our garden are now all beginning to bloom, they are just so beautiful and their fragrance fills your nostrils with the most delightful odours.  I have a special rose, it is called Cinderella, it is a pink rose and is extremely fragrant.  I love it when Mum picks roses and puts them in vases in the house they fill the house with such a lovely scent and they look gorgeous.  Tinkerbelle loves them also, she jumps up on the table they are on and sits and sniffs them. 

This week my pain has not been that pleasant but I try to manage it with my medication, massage, heat and trying to take my mind off it by keeping occupied.  So even on some days when I feel really unwell, I still like to go to school to try to take my mind off it. 

I hope that next week it will quieten down just a little at school, however with exams drawing closer, there is the added pressure of those.  I have to study the work we have done over the entire Semester which is Term 3 and 4. 

Wishing you all a wonderful week filled with many rainbow moments that you can treasure, hold in your heart always and grow from. 

MORNING TEA AT THE HYATT AND EVER SO BUSY AT SCHOOL

20th to 26th October 2012

I was fortunate enough to be invited to a special Birthday Party for Annie's 11th Birthday.  I was able to dress up in a pretty dress because the party was at the Hyatt Hotel in Canberra.  The Hyatt Hotel is heritage listed, it has been restored to its former 1920's grace.  It has art deco design elements intertwined with modern facilities.  The party was held in The Tea Lounge, there was an incredibly scrumptious buffet to select from and they make the most splendiferous hot chocolate that I have ever tasted. 

At school this week we have continued learning about Consumer Maths, in Sports Science we are working on revision ready for our exams, as well as a coaching lesson plan for the Junior School children.  In English we have begun speeches for A Bridge to Wiseman's Cove, I truly admire my classmates who have already done theirs and I am looking forward to doing mine next week.   

School is tiring for me, but it is important for me to go, it sometimes helps take my mind off  my pain and nausea that I live with each day.  You can take many medications but distraction is often also helpful. 

I had my usual physiotherapy appointment this week, Kaitlyn worked on my right foot which has been extremely sore and difficult to put weight on at all.  She massaged it and then used the ultrasound on it.  She also worked on my legs, my right knee has been giving me lots of grief, then after that was finished I had three heat packs on, one on my lower back, one on my legs and one on my upper back.  I actually dozed off while they were on me, they really do provide me with relief and I am so grateful to Kaitlyn for the wonderful amount of help she provides me. 

Tomorrow I have Interclub, I am hoping to throw the javelin and shot put, hopefully the weather will be fine.  We have experienced a few days with extremely gusty winds, yesterday there was a thick cloud of dust around Canberra produced by the winds. 

I am still working on a new fund raising idea, as you know it is my dream that one day in the future a cure will be found for this absolutely horrific disease.  I will also have to come up with some ideas for next year, after having my second book published this year, with all funds going to The Sydney Children's Hospital Foundation Brain Tumour Fund, I will have to think of something unique and huge because funds are so desperately required.

Each and every day I feel so grateful to have people in my life who care about me those like Fiona, Anne and David who paid short, caring visits this week and you, who read my Blog, leaving the most humbling, encouraging and inspiring comments, I would not be able to be so strong and positive each day without you all.  Thank you.

AN IMMENSELY BUSY START TO TERM 4

13th to 19th October 2012

Term four has commenced and as predicted it is immensely busy! 

On my first day back to School I was given an assignment, over the following days, three more assignments were handed out.  As we have exams at the end of November we have to have all our term work completed prior to that.  We also need to have time to study as these exams cover the work from both Term 3 and Term 4. 

In PDH/PE we are learning about drugs and the effects they have on people and society, we watched a Sixty Minutes interview about alcohol and energy drinks, alcohol is a depressant and energy drinks are a stimulant and when they are mixed they can be a deadly cocktail.  A sixteen year old girl died from having only three of them, another girl had to be resuscitated and a young boy was bashed by a person who had drunk them, the boy who was bashed died and he had not been drinking.  The scary thing in the interview was that even though the people were aware of what the drinks could do to them, they still wanted to keep drinking them because it helped them to stay awake and keep partying. They all had the motto of YOLO (You only live once), yes we only live once but we should make the most of our lives not destroying them with these dangerous drinks. 

In Maths we are doing Consumer Maths, I am absolutely loving this unit, we are doing work on cost price and selling price, mark ups and discounts, it is so easy to understand and is something that is related to everyday life. 

Peer Coaching sessions are continuing in Sports Science and then we have to write a lesson plan for the younger children on how to strike a ball.  We will have to write this differently to how we did the one to coach the students in our own grade. 

For English we have had to write an essay on A Bridge to Wiseman's Cove, as part of this we have also learnt how to write a successful essay.  It is important to have a thesis statement, strong introduction, clear and concise body and a conclusion.  We also have to work on a speech which is part of our assessment, it is also based on A Bridge to Wiseman's Cove. 

This week I have also had my usual and relieving physiotherapy appointment with Kaitlyn, this week she worked on releasing my spine as it had been so dreadfully painful and I felt crooked.  She also did some work on my neck which I had been having problems with bending and turning.  Finally I had those absolutely delightful heat packs on, I had three of them, one on my upper spine, one on my lower spine and one on my calves, I was in heaven, I think I have said before, I just wish I could have heat packs on me all day.

On Friday afternoon, on a perfect Spring day, I threw at Interclub at the AIS, although I was exhausted from my arduous week at school, I wanted to throw, discus was first, it has always been my strongest event. Although a bit weak and wobbly, I managed to throw 4.95m, not a personal best but I  was immensely pleased with my effort.  Then it was time for shot put, my busy week was beginning to take its toll on me and when I had one of my throws, I almost went with the shot put.  In the end I threw 1.92m, definitely not my best and worse than last Interclub, I was a little disappointed but never mind, there is always next time. 

Nalani also threw, with her knee still healing, she can not do her usual spinning technique, so this disadvantages her.  However she managed to throw a 2cm personal best in shot put from the last Interclub and her third discus throw was terrific, it is great to have her throwing with me and to be able to see how well she does.

Jarrett ran in the 1500m, he ran an amazing race in a time of 4:20:51, which was exactly what he was aiming for at this stage of the season, it was a three second personal best from his last run earlier in the year.  I was at shot put when he was running but still cheered him on as he ran so speedily, I truly admire him.

I think that by the end of this term I am going to be totally and utterly exhausted but I will feel so proud of what I have achieved, finishing Year 9 despite my diagnosis of incurable tumours on my spine,  pain and other obstacles that I have had to face this year. 

No matter how difficult things may seem at times, I truly believe that if you have a positive attitude, courage and determination then you can achieve the most amazing things in your life and in turn you may inspire others whose path you cross.

LAST WEEK OF THE SCHOOL HOLIDAYS

6th to 12th October 2012

Over the past couple of days we have had extremely unseasonal weather, and Canberra  experienced the coldest October day in more than 40 years. There was a maximum temperature of 8 degrees on Thursday, which was eleven degrees below the October average and the coldest October day since 1967.  There were also overnight snow falls in the hills between Canberra and Bungendore and in areas around Goulburn and Crookwell.  Our heating went back on and I searched for warmth from hot water bottles and blankets. 

Before the cold snap though we had experienced some of the most beautiful Spring days and combined with the start of longer daylight hours with now being on daylight savings time, it really felt like Spring had arrived.

On the weekend I had a very special visit from Tess my Starlight wish granter who came from Sydney to see me, her sister Gloria also popped in for a little while to say hello.  Tess always makes me smile, she helps me to remain positive and gives the most splendiferous hugs. 

Sunday was Mum's Birthday, I made her a rainbow patterned tissue box cover, which she really loved, I also helped Dad make her a delicious cake, it was a butter cake and we put pink icing on it. We made sure that Mum did not do anything at all so she could relax and be spoilt on her special day.  She was able to start reading a book that she got from Nana and Pop, it is all about Bert Hinkler, who is actually a relative on Nana's side of the family.  Monday was a public holiday in Canberra and with the sun shining we were able to spend some time outdoors soaking up those sun's rays, full of vitamin D. 

On Tuesday I had physiotherapy which was magnificent because I was so sore in my legs, right knee and my glutes.  Kaitlyn worked her magic and helped, I am lucky to have her.  Then I had those delightful heat packs on my back, some days I wish I could just lie there with them on me all day, they help so much whilst they are on my spine.  I also had an appointment with Australian Hearing to have my hearing aid re calibrated, this is done on the computer and when it was done, I noticed a difference in what I could hear, so that will be fantastic for my return to school next week.

At the shops I have noticed that Christmas decorations are all going up, I think Christmas is a magical time of year, it is a time that we can share joy, peace and love with those around us and try to make a difference in the lives of those less fortunate than we are.  My favourite part of Christmas is giving to others and seeing the look of delight on their faces.  I am working on an idea for fundraising for the Brain Tumour Fund and sharing the joy of Christmas. 

Thursday with the weather been so cold, was a day to keep warm and watch a DVD, we decided to watch Toy Story, it is a terrific movie and one for the whole family to watch over and over again.  Today I had an appointment with the dietitian, she went over some ideas to help me when I am feeling so dreadfully nauseous.  Did you know that eating salty foods, like chips, nuts and savoury biscuits can assist with nausea?  Also having cold food rather than hot food is also beneficial during times when you feel ill. 

Tomorrow is the first Interclub for the Summer Season, the events that I can do are javelin and shot put.  Nalani is going to do throwing and Jarrett is going to run in the 3000m.  I hope that the weather will be fine and not too cold because if it is then my pain levels are affected and I can't throw too well.  Monday is back to school for Term 4, I know that it is going to be an extremely busy term as we have exams and it is a short term also, I am looking forward to the challenges and doing my very best. 

Please say a prayer for Charlotte and her family, she is only four years old, she was diagnosed with a brain tumour the same year as I was, it is a different kind to mine, they have just found out that it has returned.  This is why it is so important that awareness and funds are raised to find a cure, this type of cancer is horrific.

'Be true to your dreams, and keep them alive, never let anyone let anyone change your mind about what you feel you can achieve.  Always believe in yourself.'

FIRST WEEK OF THE SCHOOL HOLIDAYS

29th September to 5th October 2012

We have had the most perfect Spring weather here in Canberra over the past few days, it is so magnificent to see the sun streaming into the house and have some doors and windows open letting in the fresh air with a delicate hint of spring blooms wafting in. However, the delightful weather is set to change, with rain predicted and a drop in temperature forecast for the coming week.

Last week I forgot to mention that I had seen Sarah, who not only shares the same Birthday with me, has been courageously fighting a brain tumour, shares my passion for finding a cure for brain tumours and inspires me, visited.  She is organising a truly incredible concert to raise awareness and funds for brain tumours in 2014, in fact it is going to be on our Birthday, it will be her 40th and my 16th.  The concert is going to be called Brain Storm, I know that her determination and tremendous passion for this to work will make it a huge success. 

I was also fortunate enough to have a visit from Mez, who is an Australian gymnast, she was reserve for the Australian Gymnastics Team at the Olympics.  She has fought many obstacles from injuries and other setbacks, she loves her sport and gives so much, she is a very inspiring person and her goal is to be in the team for Rio in four years time. 

This week I had my physiotherapy appointment, I have been quite uncomfortable with pain, so was really looking forward to seeing Kaitlyn.  She worked on my coccyx which has been working hard to support my spine and then that has made it painful and out of place.  As Kaitlyn released it I could feel my tightness and pain decrease in that area.  She also worked on my legs which have been painful and rather weak causing me to off balance several times.  While Kaitlyn worked on my legs, I had those amazing heat packs on my spine and buttocks.  Something so simple provides such a wonderful relief, I wish it could last much longer than it does. 

I have been working on some school assignments also this week, yes, we are on school holidays and still have work to do!  Next Term is exams so it is important to get through the work we need to cover so we will be prepared for our exams. 

On their way home to Sydney from Cooma, I also had a lovely visit from Stuart and Meryl, they always brighten my day and Stuart has experienced some of what I have as he has lived with brain tumours.  Having people like Stuart and Sarah to talk to is so special because they are the only ones who really understand what it is like to live with a brain tumour and how it changes your life. 

My very helpful and creative occupational therapist, Tom also visited, he has come up with a couple of new ideas to assist me at home and school.  He really enjoys what he does and having him supporting me makes my life just that little easier, I am so lucky to have him working with me.  He is going to have my wheelchair sped up to its maximum, I am so excited about that.  Something very exciting is that he is going to try to organise a very special wheelchair that is a much faster speed that I can have a race against Jarrett at the AIS track.  Running was something that I really loved and I had goals of been as good as Jarrett and representing the ACT, but my diagnosis changed all that and with my recurrence I know it will never happen but to just have one day when I can be fast and feel like I am at running speed would be so awesome. 

Today I had a little ride on my tricycle, the winds had come up so when I was riding into it, I found it very difficult but with it behind my back, I felt like I was flying.  I can not ride for too long as I become tired and my back becomes painful but riding today put a huge smile on my face.

Pain is a dreadful thing, it can virtually take your breath away and make you so uncomfortable, having my panamax and oxycodone helps it but as it is constantly there all the time, it really becomes tiring.  Medications are not the only thing that can help pain, using heat, having massages (thanks to Nalani) and of course physiotherapy are all great ways to assist with pain but none of these things provide permanent pain relief.  If someone could invent a medication to rid the world of pain they would be very rich and so many people who suffer all the time would be eternally grateful.

Jarrett went to a concert this week with one of his mates from the running squad, the band that they went to see was The Amity Affliction, it is not really my type of music but Jarrett likes it.  He was so excited to be going to the concert and was even more excited when at the end, the lead singer was shaking people's hands and thanking them for coming to the concert and he reached over and shook Jarrett's hand.  Jarrett was not like a girl though, you know the ones who see or touch Justin Bieber or One Direction, he did wash his hand afterwards!

All the football Grand Finals are over now, with Sydney winning the AFL and Storm winning the NRL.  Neither are teams I support, but I was cheering for them on the day.  I was elated to see the Tigers win the lower grade Grand Final.

When we turned our calendar to October, I saw the most beautiful picture of a rainbow, looking ever so rich and colourful reaching across the sky beyond a lake and bushland, then I noticed these words beside it........"Hope; sees the invisible, feels the intangible and achieves the impossible" 

I will leave you with those lovely words and hope that they inspire you as they have inspired me these last few days. 

LAST WEEK OF TERM THREE

22nd to 28th September 2012

Waking this morning the temperature was a mild 18 degrees, then, the winds picked up speed, grey clouds swept angrily across the sky, thunder rumbled like a hungry stomach and flashes of lightening flashed.  Not long after heavy drops of rain began falling and it rained for the rest of the day as the temperature dramatically dropped.  What a way to finish Term Three off at School, hopefully we will see an improvement for the two weeks of School Holidays.

Following my efforts in the Athletics Carnival, I spent last weekend feeling just so totally exhausted and in terrible pain, pushing myself had taken its toll but to just be part of such a special day made up for it. 

My last week of School was enjoyable and also a relief as it has just been one of the most hectic terms ever.  In English we are working on ‘A Bridge to Wiseman’s Cove’ talking about themes and their importance to the characters in the novel.  In Maths we finished off our unit on Statistical Data and in Sports Science we continued with peer coaching sessions. I think next Term will be extraordinarily busy also as it is a short term and we also have exams and many end of year celebrations.

I had physiotherapy again this week, it is always something that I look forward to, Kaitlyn worked on my spine, doing releasing, then I had ultrasound on it followed by heat packs.  Physiotherapy is so important to me because it assists with my pain relief and I am fortunate to have Kaitlyn looking after me.

This week I also had an appointment with my Paediatrician, he monitors my progress and decides on increases in my pain medication.  This time he also decided to do some blood tests, to check several things.  He did the reflex testing on me, I have no response in my ankles which have been that way for a while now, but my knees are still responding.  My Paediatrician is a very caring doctor and I know that I am in good hands.

The football Grand Finals are this weekend, my team, the Tigers are not in the main game but are playing the Raiders in the lower grade. Perhaps next year the Tigers will find their fighting spirit and make it to the Grand Final.

'Life does not always take us on the path that we would like it to, but we should never give up, we should hold our head high, dare to dream big and go down that path searching for our rainbow'.

SCHOOL ATHLETICS CARNIVAL

15th to 21st September 2012

This week has been inspiring, full of excitement and extremely tiring for me.  As we near the end of Term the workload has been quite intense, I always remain determined to complete all my tasks to the best of my ability, it is important for me that despite my pain and feeling unwell  that I continue to do my school work and be around my friends. 

Louise Ellery and me

Sunday was High Noon at the AIS, it was the final one for the Winter Season, and I wanted to compete in the discus and shot put events.  Discus was first, I really enjoy my discus, I throw a 750g discus, in competition you have three throws and your best throw is measured.  I threw 4.68m which was not a personal best but I was happy with the result.  Then it was time for shot put, I throw the 2kg shot put, whilst waiting to throw we had a very special visitor, it was Louise Ellery, the Silver Medallist in her classification at the Paralympics.  She is one of the most inspirational people I think you could ever meet.  I was fortunate enough to talk with her and she was wearing her Silver Medal which she let me hold, it was actually quite heavy, she was so excited about her result and her parents were so proud of her.  When I was throwing the shot put, she was cheering me on, which made me determined despite feeling a little fatigued to push myself.  I threw 2.00m which was the same as last time, not a personal best but special because Louise Ellery was watching me throw. 

At school this week I did a special survey for Sports Science which was about exercise, diet and lifestyle.  In English we are working on A Bridge to Wiseman’s Cove, we had to answer questions about each chapter and we have also been looking at symbols and themes in the book, next Term we have to do an oral presentation based on the book.  In Maths we learnt about comparing statistical data and worked on exercises about it. 

I also had my weekly physiotherapy session which I always look forward to; I think that physiotherapists are miracle workers, helping with injuries and pain.  This week Kaitlyn did some releasing of my neck and spine, and then worked on my legs.  At the end of the session I had those amazingly warm and soothing heat packs. 

This week I also had a unique and wonderful visit to the National Library of Australia, with many thanks to Dianne.  I had my own personal tour of where my two books were kept.  Mark the stacks manager showed me where Theodore and Friends is, it is in a compactus with pamphlets because of the size it is, if it was with larger books it could get lost in them.  You have to go through a storm to get to a rainbow is kept in another compactus with books.  They used to be kept by subject order but now they are kept and numbered for each year.  I got to see what happens when a reader requests a book and how it was done many years ago.  Then it was explained to me by Danelle and Chris how my books were catalogued, it has to be done in a certain way and is quite complicated.  The visit was very special and gave me a better understanding of what the National Library do. 

When we arrived at the National Library I was shocked and surprised to see a peacock sitting at the door, apparently it has been there for two years, it lives there and its name is Andrew.  It had the most extraordinary colours and seemed very friendly. 

Today was our School Athletics Carnival; it rained overnight but cleared up for the morning which was fantastic.  I was so excited and a little nervous about competing at it.  The first event that I competed in was the 100m; I was doing it in my electric wheelchair.  When the starters gun went off, I pushed the control stick of my wheelchair, it gradually and gracefully took off, although it has been sped up, it is not anywhere near as fast as what people can run.  When I was competing in the race I almost felt as if I was running, I miss my running dreadfully.  As I was competing as an AWD athlete, I did come first and gained ten points for my house, Guraguma.  I had a break and rested and then it was time for discus, I enjoy my discus and I wanted to throw well.  I had three throws and was thrilled when I threw 5.60m which is a personal best for this season, again I earned ten points for my house.   I got to go home and have a longer rest before going back to do the 200m, then the javelin, I threw 4.90m and finished off the day with shot put, I threw 2.40m which was another season personal best.  In total I earnt fifty points for my house from the five events I competed in.  To be part of the day was so splendiferous and it meant so much to me.  I remember one of the paralympians saying that if you come last you do not lose, it is the people that make excuses to not compete that are the ones that lose, and I think this is a strong and true statement.  No matter what your limitations or the obstacles you have to overcome if you just try something then you are a winner. 

Jarrett normally competes in all the running events and holds several school records, but unfortunately when he was at training after it had stormed on Tuesday, he pulled up with a sore right foot.  As it was still a little sore, he decided it was best not to run on it at the Athletics Carnival in case he injured it further, so he competed in the field events, which is something he would normally not do.  Although so disappointed about not running, he enjoyed doing something different and the challenge it gave him. 

This week was also very special because Nalani completed her Certificate IV in Massage Therapy Practice, she passed all her theory and practical exams with outstanding results.  She now begins her Diploma in Remedial Massage.  She is also doing the intensive Certificate IV in Fitness during the holidays, she gets to train clients.  Nalani has achieved so much since finishing Year 12 last year, I am so proud of her.

I am so tired and have had an increase in my pain from today but I have a huge, proud smile on my face.  I will now need the weekend to re-couperate before the last week of school next week, which looks like another busy one. 

The sun has been shinning, the skies that gorgeous crystal blue, with just wispy white clouds that resemble cotton wool balls floating gently in the sky, flowers are starting to bloom and the days are longer.  Spring is such a beautiful time of the year, it brings with it hope and new life. 

I feel so humbled by your many comments regarding the asteroid being named after me and your many words of encouragement, thank you.