THE MINI LAUNCH OF MY NEW BOOK - THEODORE AND FRIENDS - THEODORE IS LEFT OUT

7th to 13th July 2012

This week has been so very splendiferous with the mini launch of my special new book 'Theodore and Friends - Theodore is Left Out', having it published means the world to me, through the book I can not only send a message to others about tolerance, inclusion, understanding and acceptance of people for who they, this book is also another fund raising effort for The Sydney Children's Hospital Foundation Brain Tumour Fund.  My dream is to try to make a difference and be able to raise awareness and funds in the hope that one day in the future, through research that a cure can be found for this absolutely devastating disease. 

The amazing Anna and I at the Mini Launch

The Mini Launch was on Wednesday morning at Anna's welcoming and lovely home, Anna was the one who is the publisher of my book and organised all the other amazing people that were involved.  We were so fortunate that after dreadful, wet weather the day before, the sun came out and shone upon us for this special occasion.  All the generous, incredible people who helped make it all happen were there, Kimberley, Jacqueline, Jackie, Zed Seselja, Emily, Tio and a reporter from WIN Television Luke and Morgan his cameraman were there.  After some inspiring speeches from Anna and Zed who announced that the Canberra Liberals were funding another one hundred copies to be published, we enjoyed a delicious morning tea.  I never dreamed that when I was fourteen that I would be a two time published author of books that I hope will inspire and make a difference and more importantly that twice I could donate the funds to The Brain Tumour Fund.  

Zed Seselja and I, his generosity has allowed another 100 copies
of my book to be printed

I was really surprised to see that the story of my mini book launch was on WIN News that night, I am so grateful that they thought that what I am doing is special enough to put on the news and I hope that through that story that more people will purchase my book, because the more books that are sold mean the more money that goes to research to find a cure.

There was also a story done for City News this is the link to it http://citynews.com.au/2012/new-book-from-unstoppable-dainere/, I was also extremely surprised and honoured to see this story. 

Many times I have thought it a little unfair to have to have been given such a devastating journey, yet through that journey I have grown and learnt things that many people my age never will.  I have also met the people who reinforce that the world we live in actually has people who have pure hearts and love to share.  God chooses those who he thinks are strong enough to go through journey's like mine and I know that the path he has given me is for a reason. 

Following the launch I was so very tired and sore, I think it was the excitement of it all, but to be surrounded by those that really are passionate and truly care put a huge smile on my face that is still sparkling even today. 

I have sold forty seven books already, so from the original one hundred there are only fifty three remaining, because of the generosity of Zed Seselja another one hundred been printed means that there will be one hundred and fifty three available for sale.  It would be totally incredible if they could all be sold by the end of August, I think that is a goal that I will set myself.

Apart from my mini book launch I have had physiotherapy this week, my right foot has been terribly sore, so Kaitlyn worked on it, it appears to have a tear or sprain.  After Kaitlyn worked on it, she then taped it to help support it.  I am not able to put weight on it, without it hurting, so I am hobbling around using my rollator or I have to get someone to pick me up.

I completed another module in my Beginner Sport Coaching Course for Sports Science, this module was about injury risk and management, I found it extremely easy and passed again with 100% first attempt.  I now only have two more modules to work through and then I will have completed the course, I am hoping to do this before the end of the School Holidays.

Speaking of injuries, poor Nalani when she was doing running training on Sunday, had a fall and injured her left knee, it is the one that she had surgery on at the end of 2010.  It was a bit painful but had no swelling at first but then later in the day it began to swell.  She used the RICER principle, which is Rest, Ice, Compression, Elevation and Referral.  She went to physiotherapy on Tuesday afternoon and it was found that she had a knee subluxation, she had to be put in a brace to keep her leg straight and continue with ice, elevation and compression.  She has to wear the brace for a week and then it will be heavily taped.  She is very fortunate that there has been no ligament damage and she is fit and strong so hopefully it will heal well.

Mum's knee is improving, she has a brace that restricts her movement a little but she is up and about again doing all the housework and taking care of all of us.  Hopefully her knee will be repaired enough for her to go to school with me when we go back on 23rd July and also for her to be able to drive the car again.

In Footy Tipping I am still leading by three, Pop got all of them correct last week and he is now catching up on us, I am six ahead of him.  He just needs to have another couple of good weeks and he could be in the lead.  This week my Tigers are playing the Panthers, I am hoping that they will draw on their inner strength and have a win this week, they are currently sitting just outside the top eight in ninth position. 

No matter what hurdle you come across in your life, find the courage to jump it and look beyond and follow a new path that may lead you to your rainbow. 

HOW CAN YOU PURCHASE MY NEW BOOK -THEODORE AND FRIENDS

Good afternoon everyone, if you would like to find out details about purchasing my new book 'Theodore and Friends - Theodore is Left Out' please send your enquiries to Stephen and Yvonne, my Mum and Dad at santhone@bigpond.net.au and they will let you know what to do.

The cost of the book is $15 and the entire amount will all be donated to The Sydney Children's Hospital Foundation Brain Tumour Research Fund, in the quest to find a cure for this devastating disease.

I deeply appreciate and thank the many of you who have already purchased a copy, I believe that together we really can make a difference. 

My extra special new book

FIRST WEEK OF THE SCHOOL HOLIDAYS STARTS IN STYLE

30th June to 6th July 2012

Firstly, I would like to thank the many people who have already enquired about or purchased my new book 'Theodore and Friends - Theodore is Left Out'.  As you all know there are only one hundred copies available at present and the cost is $15 which the entire amount is being donated to The Sydney Children's Hospital Foundation Brain Tumour Fund.  My parents left contact details in the comments from my last Blog if you need to find out how to purchase a copy of the book. I am hoping that the funds that are raised through the sales of this book can go towards research into finding a cure to this dreadful disease.

I am on School Holidays at present, so it means that I do not have to race around of a morning to get ready for school in the freezing cold Canberra Winter weather.  I have however been working on my Sports Science Beginner Coaching Course, I am hoping to have it all completed by the time school returns.  I finished the second module and again achieved a score of 100%.  I only have three more modules to complete, I am making sure that I am reading everything carefully, well actually Mum is reading it all out to me because the print is small and my nystagmus in my eyes just causes everything to blur together. 

We have not been able to do much over the holidays so far because of poor Mum's knee, it has left her immobile at the moment, she can not walk too far and she is not able to drive at all.  So we have been playing some old favourite board games, watching DVD's and resting.

However, on 1st July it was a special occasion in our house because my Nana and Pop had organised Christmas in July, we even put up our Christmas Tree for the day and gave each other a small gift.  Then we had a scrumptious baked lunch with chicken rolls filled with honey and macadamia nuts, ham, roast potatoes, roast pumpkin, peas and bread rolls.  Then for dessert Uncle James and Aunty Kate brought the most amazingly, sweet and extraordinarily rich chocolate cake, which even had thick rolls of chocolate on the top.  You could not eat too large a piece because of how rich it was but when it touched your lips you salivated, it was incredible.  We also made lolly bags for everyone with Christmas stickers on them, it was a special Christmas in July.

Theodore and I in the Hummer - How exciting!

Then on the Monday night I received the most amazing surprise.  I had been a fair bit of pain during that day and felt totally exhausted but after my shower Mum told me not to get dressed in my pyjamas like I normally would.  I did not know why.  Then at 5.30pm a heard a car pull out the front of our house.  It was not any car, it was a Stretch Hummer, the same one that Nalani had for her formal last year.  Then I was told that we were going for a ride in it to look at the night lights of Canberra.  Inside the Hummer there were coloured lights that changed colour and we had drinks and lollies as well.  We drove all through the City and then up to Parliament House which is colossal, you really don't realise how huge it is until you drive around the entire surround of it.   Then we went around the lake, which was really breathtaking, I especially thought the Carillon looked incredible when it is all lit up at night.  Another thing I absolutely loved were the many trees through the city that were decorated in lights, there were even some that had rainbow ones on them.  After our totally awesome drive we then went and picked up some gourmet pizza for dinner.  It is something that I would class as a  truly precious memory especially because I got to share it with not only Mum, Dad, Nalani and Jarrett but also Nana and Pop and Uncle James and Aunty Kate.  Thank you to Sean and Peta from Canberra Hummers, your car and your hospitality are just extraordinary.  Now just a little bit about the Hummer, it stretches 36 feet and can seat up to sixteen people it has a colour lights show, CD player, DVD player and a mirrored ceiling.  If you want to do something in style or have a special event to celebrate you should go in it. www.canberrahummer.com.au

The Stretch Hummer

I had physiotherapy on Wednesday, it is always relieving to have Kaitlyn do some releasing and massage on my spine.  I sometimes wish that my appointment could go all day, then all the aches and pains in my body could be relieved.  Mum also had physiotherapy for her knee, which is healing well, she was hoping to get a brace but the size that came in was the wrong one so she is still waiting for one. 

On Wednesday I also had an appointment with my paediatrician.  He asked me how everything was going and then did some reflex testing on me.  My ankles still have not reflex action and this time my right side leg was also not as good as the left.  He talked about my pain and has increased the number of doses a day I am having of the oxycodone.  Oxycodone may relieve pain a little but it also has the dreadful side effect of causing constipation so I also have to take a medication called lactulose on a daily basis to try to prevent that.  I have to see him again on 21st August or before if I have any increased pain or new symptoms. 

In Footy Tipping I am now three ahead of Nana and hoping to hold onto that lead until the end of the competition.  I have my fingers, toes and everything else crossed that my Wests Tigers will win against the Bulldogs tonight, if they don't then they may drop out of the top eight which will mean they will have to win all their games to have a chance of making the finals. 

Next week I am going to a very special morning tea, Anna who is the publisher of my book has organised it and the people who helped make it happen are going to be there as well as a couple of special guest.  I will tell you all about it in next weeks Blog. 

Stay warm, don't dwell on the negatives in life and believe that you can achieve anything you put your mind to, you just have to have the determination and courage to do it. 

LAST WEEK OF TERM 2

23rd to 29th June 2012

As I sit typing this entry the skies have turned a miserable grey and rain has begun to fall from the thick, heavy clouds hovering in the sky.  At least with rain about it means we will not have endure an overnight arctic freeze for a change.  I find that the rain though makes you feel just that little bit melancholy.  Hopefully the weather will improve as I am now on School Holidays, I am very fortunate to have a three week break, many private schools in Canberra do.

In Sports Science I have been working through the Beginner Coaching Course, it is a computer based course, you read through information, answer questions and then at the end of each module you have to do an assessment.  I finished the first module and did the assessment and was really proud to achieve 100%.  There are five modules in all to work through and then at the end, as long as you pass you are then awarded with a certificate.  During the holidays I am going to work through the other four modules so that I have it all completed prior to returning to school.

My pain has been up and down this week, some days is makes me feel quite ill and even though I am taking the oxycodone and panamax, it seems to just keep it the same all day.  Yet on other days I am fortunate and there will be a slight decrease in the pain with the medication, those are the days that I try to really make the most of. 

This week I was also fortunate because my amazing physiotherapist, Kaitlyn returned from her holiday, so I had physiotherapy.  It felt so fantastic to have her release my spine again, massage it and then put those incredibly soothing heat packs on afterwards.  I was so excited when she shared some very special news with me, she got engaged whilst away on her holiday. 

I was not the only one who had to go to physiotherapy this week, Mum was there also, you see on the weekend when she was remaking all the beds, she knocked her right kneecap on the end of Jarrett's bed, when she knocked it she actually knocked her kneecap out of its place, this is called a patellar dislocation.  She was lucky that she was able to knock it back into place and although it was painful, it did not swell and she has not torn anything.  However she has to rest it for a week and then gradually get back to normal, it will take about three to four weeks for that, so she will be spending school holidays getting her knee better.  I lent her my rollator to assist her walking and she has it taped and is going to have  a brace for it to help to her get around much more easily and be able to look after me.  The knee that Mum knocked she had a knee reconstruction on many, many years ago after she injured it playing netball.  I have been praying that it will get better quickly for her and that it will not give her any more trouble.

In footy tipping I am still winning by two but Nana has been picking well, so she could easily catch up especially this week with many teams having players out because of State of Origin. Pop is ten behind me, so he has a little catching up to do but he should not give up as there are plenty more games left.

Tomorrow Jarrett and Nalani are racing in another pointscore Cross Country Race, it is 4.5km and on an extremely difficult course, they are hoping to do their best. Nalani is leading the female pointscore at the moment so she wants to hold onto that lead. Jarrett is second so he is hoping to pick up extra points to take the lead.

Did you know that brain tumours are now the second most common cancer in childhood, after leukeamia and unlike other cancers the incidence of brain tumours are increasing. Brain tumours are the most difficult of all childhood cancers to cure.  Research into the causes of and treatments for brain tumours is seriously under-funded, yet research focusing specifically on paediatric brain tumours is crucial to saving lives.  Brain tumour patients who survive are often afflicted by some degree of motor, cognitive or endocrine dysfunction and require the help and support of many health professionals to optimise their outcomes.  A Paediatric Oncologist at the Sydney Children's Hospital says that there is a 70% cure rate of childhood cancers and this demonstrateds the real life success of medical research, however there is a personal cost and for some tumours, such as many childhood brain cancers the cure rate is much lower.  He has said that new treatments are desperately needed.  There is an urgent need for new drugs for treatment of childhood cancer to be developed and available in Australia, because the benefits of conventional therapies have plateaued. 

The front cover of my new children's book

I have always been passionate and determined to do what I can to assist to raise awareness and funds to help those specialists find a cure or at least less devastating treatments for brain tumours and so I would now like to announce my latest fund raising effort.  I have written another special book, it is a children's book entitled 'Theodore and Friends - Theodore is Left Out'. When I wrote it, I was hoping to help children understand that just because someone is different, it does not mean that they should be excluded.  The star of the story is my extraordinary bear, Theodore who has travelled my journey with me and given me strength. One hundred copies have been published thanks to a huge and determined effort by Anna, Kimberley and Blue Star ACT to whom I am eternally grateful.  I am going to donate the entire proceeds from the books to The Sydney Children's Hospital Brain Tumour Research Fund, hoping that even the little that I can contribute will make a difference.  The cost of book is $15.00 and as there have only been limited copies made, it is extremely special.  Unfortunately,  they are not available online or at bookstores, you can only get them directly from me.

The back cover of my new book

May you all have a splendiferous and blessed week, remember to smile at others, open your heart in kindness and generosity and never, ever give up on a dream.

ARCTIC TEMPERATURES IN CANBERRA

16th to 22nd June 2012

With overnight temperatures well below zero and a record cold overnight temperature of minus six point eight degrees this week, we have woken to sparkling, white lawns, frozen bird baths and slippery driveways.  The dreadful arctic temperatures make you want to stay in a nice warm bed and cause pain to become a little worse.  The day time temperatures have not been too pleasant either and we have had overcast skies, chilly winds that feel like you might just be in a snow drift and we have even had rain this week. 

On Saturday, it was the Athletics ACT Cross Country Championships, it had rained prior to the event and the temperatures were extremely cold.  Nalani and Jarrett were both running in the 6km Championship event, Nalani in the U20 women and Jarrett in the U18 men.  I had wanted to cheer them on, and was fortunate enough to watch from a sheltered area.  There were even athletes from Interstate in the race so the competition was fierce, from the moment the gun went off it was obvious that the men's event would be a tightly fought one.  Jarrett ran a strong race despite having some asthma difficulties, which always happen when the outside air is unusually cold and he ran ever so strongly to finish 3rd, getting his second best time ever in a 6km race.  Nalani was incredible also, she had just recovered from a sinus infection and got a blood nose part way through the race, she kept running and finished the race in 4th place which was a fantastic achievement, she ran a personal best for the distance.  There was a presentation ceremony and Jarrett got a bronze medal, he was really pleased with his effort and so were all of us.  I thought both Nalani and Jarrett were both splendiferous and it was so special for me to be able to cheer them on. 

I was so lucky also to have another visit from my best friend, Emily, she was visiting Canberra again and came to see me for a little while.  It was fun to catch up on her latest news and share some of what I have been doing. 

At School this week in English we have been watching the Baz Luhman version of Romeo and Juliet, it is quite different from the original one,  it has been recontextualised, the language remains the original Shakespearean but there are many modern aspects thrown in.  In Maths we are working on Trigonometry, I am really enjoying it, it is a change from the complexities of probability and measurement.  In Sports Science, we are doing an online beginners Coaching Course, I am definitely enjoying doing this and when we complete it, we get a certificate. 

There is only one week left at school now until the end of Term and then we get a welcomed three week break, I am really looking forward to it.  The cold weather, pressure of exams and illness has all taken its toll on me and been able to sleep in and rest when I need to will be so beneficial.

On Sunday there is a High Noon meeting, the events are shot put and javelin, however the forecast is for showers and it it only going to be ten degrees, so I am not sure whether I will be able to compete, even though I would love to, I know that the cold and wet really affect my pain and make it worse and then I would not be able to throw properly.  Hopefully the forecast is wrong and the day will actually be a clear blue beautiful Winter day. 

In Footy Tipping, I still remain two ahead of Nana and Pop is just behind her.  I was so saddened when I was watching the Tigers match to hear that Robbie Farah's mother had passed away from Cancer, then at the beginning of the match to see Benji Marshall reduced to tears, it was so emotional, it must have been so difficult for them to play that game.

In my next Blog I will have some splendiferous news to share with you about my latest fund raising effort for the Brain Tumour Fund.  As there is little to no Government Funding for paediatric brain tumours,  to fund research to try to find a cure to this devastating disease relies on the generosity of the general public.  So I am hoping that my new, wonderful fundraising project will be able to assist in some way.

A QUIET WEEK

9th to 16th June 2012

Last weekend was the Queens Birthday long weekend, the Queen's Birthday is a public holiday in Australia, as the country is a member of the Commonwealth of Nations, with the monarch of the United Kingdom being head of state.  The Monarch's Birthday was first celebrated in Australia in 1788. In that year, King George III was the Monarch and Governor Arthur Phillip declared a holiday to mark his birthday. Originally, the Monarch's birthday was celebrated on the anniversary of the actual date of birth of the King or Queen. However, after the death of King George V in 1936, the date remained close to his birthday, which was June 3.

It was a good chance to rest, especially after an extremely tiring and mentally draining week of exams.  Although on Sunday, I did decide that I wanted to throw discus and shot put at the High Noon Meet.  The weather was actually rather pleasant and with the sun shinning my spirits always brighten.  Discus was my first event, every thrower had four throws, with each throw a numbered marker is put in the ground, if your next throw is an improvement on your first one then the marker is moved.  At the end of the competition they measure your throw, I threw 5.02m in discus, not a personal best but I enjoyed throwing and that is what is most important.  Then it was time for shot put, again we had four throws, I managed to throw a distance of 2.30m which was not quite a personal best but I was happy with my effort. 

While I was throwing Lauren Boden and Brendan Cole our two Canberra athletes that are going to the Olympics, ran in a 400m Hurdles race, they were just awesome to watch and I hope that they do exceptionally well in their races at the Olympics along with the other athletes and also those chosen for the paralympics.

School this week has been rather quiet with much less pressure than the past few weeks, because exams are over and our Semester work has been completed we are just starting to look at what we will be doing next Term.  In English we are looking at Romeo and Juliet, reading the play as well as watching the original film, we will then next Term have to write an essay and a new script for the balcony scene.  At times the language is a little difficult to understand because it is so very different to the way that we speak today but it is a magnificent story.

In Sports Science we are going to be doing Skills Acquisition and Coaching, which is yet another extremely interesting area to be looking at.  We have been watching a film called Invictus. The film tells the inspiring true story of how Nelson Mandela joined forces with the captain of South Africa's rugby team to help unite their country. As the newly elected President  Nelson Mandela knows his nation remains racially and economically divided in the wake of apartheid. Believing he can bring his people together through the universal language of sport,  he rallies South Africa's rugby team as they make their historic run to the 1995 Rugby World Cup Championship match.  I am actually enjoying watching it and feel that there is a definite lesson to be learnt from the story.

How splendiferous it was to see my Wests Tigers defeat the Melbourne Storm, they were absolutely incredible and delved deep to find the determination courage to win. I hope that they will continue to do well and at the end of the season they will be there on Grand Final day. 

In Footy tipping, I also performed well, getting four correct, to over take Nana to be leading by two points.  Poor Nana had a dismal week getting none of the games correct and Pop also got four like me so he is making his comeback now. 

I had an appointment with Australian Hearing today, it was my twelve month check up on my hearing.  There has been a very slight decrease at the high frequency in both ears, so my hearing aid had to be calibrated so I can hear a little better, however the machine was not working properly so now I have to go back in two weeks to have it done then. 

Jarrett and Nalani are running in the Athletics ACT Cross Country Championships tomorrow, they are both running 6km, it is going to be in the morning, hopefully the weather will be favourable as they are predicting rain at times.  I hope to be able to be there to cheer them both on, I love watching them run.  When I throw they are always there to cheer me on and having your family behind you really makes a difference, you feel so loved and encouraged.

The pain in my spine is still constant, it can make me feel very tired, I try to find things to distract me from it and of course I am on pain killers to relieve it.  I often find that the pain and the medication can make if extremely difficult to concentrate and when I am at school that is frustrating.

I think this quote fits with my love of sport and with life itself - There is no telling how many kilometers you will have to run while chasing your greatest dream.

STILL UNWELL

2nd to 8th June 2012

The sun is shinning brilliantly in the crystal clear, sparkling blue Winter sky, I love the warmth, it makes me smile and takes away some of my pain.  This week I am still unwell and have not been able to attend school, I have been back to the doctors who has put me on another lot of antibiotics, I still have infection in my left ear, fortunately my chest is clear of infection now however my lungs are tight so I have to use asthma puffers. 

With being ill I have spent much of my time resting, doing some school work when I feel well enough, some reading and watching some DVD's.  We had some atrocious weather during the week, massively gusty winds combined with heavy rain and temperatures which dipped below double figures for the maximum.  We were not the only ones with dreadful weather, Sydney really suffered severely from the winds and storms. 

Last Saturday Nalani ran in a Cross Country Pointscore event, the skies looked gloomy and opened up just as she began to run.  It was a 4km race at Weston Park, she ran extremely well, she was 8th overall and was the fourth female.  When she finished her shoes were steaming from the heat of her feet and the icy cold rain that was falling. 

It was Jarrett's 17th Birthday on Monday, he was not well with a virus so could not do too much, however he did enjoy a pizza dinner and a delicious ice cream cake to celebrate his special occasion.  His illness stopped him from running in the ACT Schools Cross Country Championships, if he ran with an infection, he could of faced more severe illness.  Based on his excellent performances at other events hopefully he will still have a chance of being selected to represent the ACT at Nationals later this year.

I had a very special visitor on Sunday, my best friend from school, Emily, who moved to Sydney.  It was so lovely to see her, her sister Jess and her Mum.  Unfortunately she could not stay too long because I was unwell but she is hoping to make a return visit in another month. 

On Tuesday I had physiotherapy with Kaitlyn, I was so relieved to be able to see her, as I had not had it the week before because I was just not well enough.  She released my spine which was twisted to the left and right, she also released my neck which was rather stiff, then I had the wonderfully warm and soothing heat packs on my back.  I will not know have physiotherapy for another two weeks as Kaitlyn is going on a special holiday, however she has left instructions for Nalani and she will be able to massage me. 

I also had a visit from Wendy, my wonderful CNC from Sydney Children's Hospital, she visited with Sally my special nurse in Canberra and they were checking on how I was and it has been decided to increased my dosages of my pain killer called oxycodone.  It does make me feel rather drowsy but apparently I will get used to the higher dosage and it will not make me as drowsy but it will help my pain a little more.  Oxycodone is an opioid narcotic pain reliever similar to morphine. Oxycodone is used to treat moderate to severe pain.

I am catching up in Footy Tips, only two behind Nana now, poor Pop has fallen quite a bit behind but you never know, he may have a few really good weeks and catch up.  I was so excited that the Tigers won last week 40-0 beating the Raiders, I would have loved to have shared the excitement but was just not well enough to be there.  I hope that their success continues, their early season storm is now turning into a rainbow. 

In the next couple of weeks I hope to be sharing some extremely splendiferous news with you all, it is another way that we can raise funds for the Brain Tumour Fund as well as something very special for me. 

May you all stay well, warm and spread happiness to others who come into your lives.