A SPECIAL LEGACY

6th July 2013

Dainere and Theodore 8.2.1998 - 24.6.2013

To the many of Dainere's Blog followers, please accept our deepest appreciation for your love and support throughout Dainere's journey and especially over the past few weeks. 

We desperately miss our precious girl, she is in our thoughts and hearts every moment of each and every day.

Throughout Dainere's short life, she was able to inspire so many people, change lives and raise desperately needed funds and awareness for paediatric brain tumours.

She did all of this with such a selfless, courageous, determined, loving, honest and humble nature.  She was a role model to young and old and her footprints will remain on many hearts forever. 

As this Blog came from Dainere's heart, soul and mind, we feel that it is not our place to continue writing it.  This Blog is one of Dainere's greatest legacies and we hope her beautiful gift of writing and inspiring will continue throughout many years to come.  So although it will not be updated, it will remain to inspire and touch more hearts and lives.

As Dainere's greatest wish in life was to raise awareness and funds to help find a cure for paediatric brain tumours please continue to share her story and assist in fundraising so that no other children will lose their lives to this absolutely horrendous disease.

We have included a link to a song which was played during Dainere's Celebration of Life, it is called 'Look For Me In Rainbows' by Vicki Brown.  http://www.youtube.com/watch?v=RFc5sdn78b0&noredirect=1

If you were inspired by Dainere, thinking of or missing her you can light a candle, leave a flower or message on her Heaven Address page http://www.heavenaddress.com/Dainere-Monique-Anthoney/443600/

This is then the final entry to be written on this Blog, our precious angel will be with you all forever and always, especially in rainbows.  

A special message sent from Dainere as 15 balloons were released at her burial

Update 16/11/2013

It is with extraordinary pride that we would like to share with you this splendiferous news.  Last night in Canberra Dainere and Jarrett were jointly awarded a commendation in the Individual Community Service Category at The Young Canberra Citizen of the Year Awards. 

Then in what was a moment of mixed emotions such great pride, joy, honour, love and sadness - Dainere and Jarrett were announced jointly as The Young Canberra Citizen of the Year 2013.  http://www.allnewsau.com/news/dainere-anthoney-and-jarret-anthoney-the-young-canberrans-of-the-year/related

Jarrett will carry this honour with his usual humility, humbleness, maturity and dedication.  He will ensure that Dainere's legacy and greatest wish in life of raising desperately needed awareness and funds for Brain Tumour Research to find a cure, less devastating treatment and screening will one day occur.  

Both Jarrett and Dainere have shown such courage, determination, dedication, selflessness, passion and empathy for others, they are truly inspirational role models for the Community.   

Special mention to Jarrett who was the highest individual fundraiser in the 2013 City2Surf, raising an inspirational amount of $52 150 for The Sydney Children's Hospital Foundation Brain Tumour Research Fund.  Dainere would be so extremely proud of him not only for the funds he raised but also the awareness.  In the race he finished in a time of 00:59:02 and came 1369 which was a huge achievement as that was in the top 2% of finishers. 

DETAILS ABOUT THE CELEBRATION OF DAINERE'S LIFE

A celebration of Dainere's life will be held on Tuesday 2nd July 2013 at Holy Spirit Catholic Church, Burdekin Avenue, Amaroo at 10.30am. 

Following the Service a Burial will take place at Gungahlin Cemetery.

We are asking that people bring a single flower or couple of flowers to the Church to help build a very special rainbow for Dainere.

Dainere requested that people wear a colour of the rainbow.

It was Dainere's wish that donations be made to Jarrett's City2Surf fundraising for The Sydney Children's Hospital Foundation Brain Tumour Research Fund.  The link is http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

Her greatest wish in life was to raise awareness and funds so that a cure can be found for this horrendous disease so that no other children lose their lives in the future.

A special page has been set up in her memory http://www.heavenaddress.com/Dainere-Monique-Anthoney/443600/

Our family has been so deeply touched and comforted during this most difficult time by your beautiful messages and memories. 

YOU HAVE TO GO THROUGH A STORM TO GET TO A RAINBOW

25th June 2013


At 7:25pm last night God took our beautiful daughter and sister Dainere into heaven.  Heaven gained an extraordinary and special angel. She is no longer in pain or suffering and is now safe in God's loving hands. 

Rest in peace Dainere Monique Anthoney, you are the most inspirational, amazing, selfless, courageous, generous and beautiful person we know, we love you more than words can say and will miss your gorgeous smile and warm hugs. 

We thank you all for the support you have shown Dainere throughout her journey, she truly did touch so many people's hearts and lives, inspired them, changed them and raised so much awareness about brain tumours. 

Whenever you see a brilliant Rainbow in the sky know that Dainere is watching upon you all, smiling and giving you hope.

SO MANY HUMBLING AND THOUGHTFUL COMMENTS

15th to 21st June 2013

We are so extremely humbled and overwhelmed by your many beautiful comments.  Dainere's gentle soul and exquisite words have touched so many people, we are all so blessed to have her in our lives.

This week has been mixed for her, she has had a couple of days where she appeared a little brighter but then has had some dark and horrible days. 

The most difficult aspect of this disease is that it is so horrendous in the way that it is taking each and every little piece of her away from us. 

It is comforting to see that the syringe driver is making her life easier and keeps her comfortable.  However when moving her at all her little fragile face winces in pain, we give her breakthrough doses of morphine which I inject through her line.  It was originally 2.5mg but has now been changed to 5mg to try to take the edge of the pain of movement.

She communicates with us through slight nods or shakes of her head or blinks of her eyes. Sometimes her faint little voice will say one or two words, hearing her voice is so beautiful.

The palliative care team are so wonderful, they provide us with the very best care they can and Dainere seems to have made an impression on them, as she does. 

She still manages that totally incredible smile and it warms our hearts each time we see it. 

Jarrett has now finished his Year 12 exams, he has mixed feelings about how he thinks he went.  To have to face exams during such a difficult time is not easy but he too possesses some of the same qualities as Dainere and has shown perseverance and determination throughout.

Nalani is the same, she still has one exam remaining.  She has achieved marvellous results from her exams so far, having displayed courage and strength throughout hers. As a parent I am proud and in awe of both Nalani and Jarrett.

Jarrett's fundraising for City2Surf for The Sydney Children's Hospital Foundation Brain Tumour Research Fund is going well.  He has not quite achieved $15 000 yet but is hoping that during the next 50 days that remain until the race that many more donations will come in. 

As Brain Tumour Research Funding is very little, it is only through people like Dainere and Jarrett that the research can be done.  Brain Tumours are not as common as other cancers but they are the most lethal, so we need to raise these funds so that no more children will have to lose their lives.
http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90


Something wonderful that happened this week was that today on his Nana's Birthday, Jarrett was presented with the Pierre de Coubertin Award.  This is such a huge honour for Jarrett and such a proud moment for the entire family.


The Pierre de Coubertin Awards are named after the founder of the modern Olympic Games and take place on an annual basis to recognise senior secondary students who demonstrate attributes consistent with Olympism through participation and commendable behaviour in sporting activities.

Again with deepest appreciation for your comments, we are so very touched by them.  

SYRINGE DRIVER INSERTED THIS WEEK

8th to 14th June 2013

As Dainere is not well enough to write her Blog, I have again wanted to keep you all informed of how life is treating her. but firstly I would like to express mine and the family's deepest appreciation to Dainere's many followers for your humbling, touching and encouraging comments, I read them to Dainere, with each one, a beautiful smile enlightens her tiny face. 

Here in Canberra we have had some dreadful weather with two days of rain, which I have to admit the garden needed but it was just miserable to look out at. 

Dainere has had a tough week this week, her swallowing became more and more difficult and due to the many hours she was sleeping she was missing doses of her pain medication, so the decision, which she was also involved in (by nodding her head as a yes response) to insert a syringe driver was made.

A syringe driver is a small infusion pump used to gradually administer small amounts of medication to a patient.  It is regularly used in palliative care to continuously administer analgesics and other drugs.  By having this it prevents periods during which medication levels in the blood are too high or low and avoids the need to swallow.

The medication is administered subcutaneously (just underneath the skin), so Dainere has a small butterfly clip inserted in her thigh with a thin tube running up into the syringe driver.  It is painless and takes the stress out of trying to swallow medication.

She has to have Ondansetron which is her anti-nausea medication every day, she has this as a dissolvable wafer on her tongue. 

The shakes that she often speaks about is called Clonus which is a series of involuntary, rhythmic muscular contractions and relaxations.  It is often the sign of a neurological condition, in Dainere's case it is the caused by the tumours on her spine.

She sleeps most of the day but when she is awake we are blessed by her beautiful smile.  She is unable to assist with any body movement when dressing or being moved but when holding someone's hand her grip is extremely tight. She is a fighter and she is not going to give in to this disease easily. 

The palliative care nurses are now visiting daily to change the medication in the syringe driver and check on pressure sores and any other needs she has.  The level of care they provide is exceptional, it is a blessing to have them.

Jarrett is in the middle of his Year 12 exams at present and Nalani is also in the middle of her exams.  They both possess the most beautiful natures and have taken on determined study ethics during what have been difficult days. 

Dainere is now winning the footy tipping, that put another huge smile on her face as well as her Wests Tigers again winning.  This week she entrusted Jarrett to do the tipping for her, he is hoping he has chosen well enough to keep her on top.

To those Blog followers who have donated to Jarrett's City2Surf Fundraising effort, thank you so very much, please keep sharing his link to as many people as possible, it is only through the money raised through the efforts of people like Dainere and Jarrett that the research can be done to attempt to find a cure.  No child or their family should have to suffer through the horrors of this disease.  Here again is his link http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

If you have Facebook, apparently on The Everyday Hero Facebook Page Jarrett's Fundraising Story will be on there on Sunday 16th June, so like the page and then you can read all about it, like it, comment and share it.

This is one of Dainere's quotes that I would like to share with you this week.  "When your days are grey and gloomy, those who love you the most will help you discover all the beautiful colours of the rainbow"

A VISIT FROM NANA AND POP, JARRETT'S 18TH BIRTHDAY AND HUMBLED BY GENEROSITY FOR JARRETT'S CITY2SURF FUNDRAISING

1st to 7th June 2013

Unfortunately, Dainere is unable to write her Blog herself this week again but wanted to keep all her wonderful followers up to date on what is happening.

We were so blessed to have a visit from my parents (Dainere's Nana and Pop) for  a few days.  Having them around put a beautiful smile on Dainere's face. 

This week we also celebrated a huge milestone in Jarrett's life, his 18th Birthday.  It was a quiet celebration, but was one filled with love. 

Dainere is staying warm either in bed or under her lovely electric throw blanket.  She has been sleeping for many hours again throughout the day.  Sometimes I find she is staring as if right through me, I wish I could know what she is thinking. 

She is still swallowing medicine, her determination conquering again, although it takes her a long time to get the 10ml of panamax and the 30mg of MS Contin which the granules are made up in 10ml of water.  Her motive for doing this is she does not want to have the syringe drive inserted, this would provide her with around the clock medication but it is something she has told the doctor and nurses she is not keen to have.

I have been reading some of her very favourite stories from her childhood, they are by Shirley Barber and she writes lovely stories and also illustrated them with the most incredibly imaginative and glorious pictures.

Next week is a week of exams for both Nalani and Jarrett, so the long weekend will see them both with their heads in their books studying.  Or should I say using their computers to study as so much of today's education is based on technology.

Jarrett is recovering from his shingles which caused him quite a lot of pain, he was also frustrated as having them stopped him from doing his running training, however he has trained for so many years and so fit, a couple of weeks off won't harm him. 

We have all just been absolutely humbled and amazed by the generosity of so many who have contributed to his City2Surf Everyday Hero Fundraising Page.  He is now over $9000 and has been busily working on letters and posters to send out to local businesses, hoping to gain their support.  Here again is the link to his page if you would like to share it with anyone in your local community who you may think could help.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

I think she is catching up to her Nana in the footy tipping, hopefully her Wests Tigers can have a win again this week, that would definitely put a smile on her face.

At school this week Senior School had a very special fundraising day, it was called 'Theodore Day'.  The students were able to bring a teddy bear or their favourite soft toy in for a gold coin donation.  This was what Dainere would say was a splendiferous idea and is perhaps one that we could expand upon for future fundraising for The Sydney Children's Hospital Foundation Brain Tumour Research Fund. 

I can't thank you all enough for the many supportive comments that you have left on the Blog, I have read them all to Dainere, all of you have truly made a difference in her journey.

TIGERS WIN AT LAST!

25th to 31st May 2013

Good evening everyone.  Dainere is not up to writing her Blog this week so she has deputised me to do it.  I am afraid I don't possess her incredible and beautiful gift of writing but I will fill you in on her week.

She was so excited to see her Wests Tigers finally have a win, it was a hard fought one at that too.  Them winning put a huge smile on her face.  The fact that they beat the Cowboys, which is her Nana's team made the win all that more special, as they put her closer to Nana in the footy tipping competition.

Again this week she has not been able to attend school, she is sleeping for roughly 75% of the day, she is having dreadful swallowing issues, incontinence, pressure sores and is terribly off balanced.  She is such a fighter though and despite adversity is still able to smile that gorgeous smile of hers that magically lights up the room.

She had visits from her two wonderful palliative care nurses and one from Kaitlyn her incredible physiotherapist.  What amazing people they are they have assisted Dainere on this journey above and beyond what would be expected.

Her Occupational Therapist, Bronwen is organising a shower chair for her to make life just that little bit easier when showering her.  There are so many useful items available to help those with illness or disability, it is amazing.

We are all so extremely proud of Jarrett's City2Surf Fundraising effort, almost $6000 and to use Dainere's word, this is so splendiferous!  He would not be at that amount if it wasn't for people opening their hearts, spreading the word and being so generous.  Here again is the link to his everyday hero page to keep spreading in the community.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

Speaking of Jarrett, he is not too well at present, he has been diagnosed with shingles, which the doctor has said would have been brought on by stress.  Trying to keep up with the hectic demands of Year 12 as well as having Dainere unwell has taken its toll on him.

It is his 18th Birthday on Tuesday, it will be a day of quiet celebration and one of pride for such an extraordinary son and brother. 

Thank you for the comments you leave for Dainere, she is humbled and grateful to everyone.

COLD WEATHER AND A SPECIAL PRESENTATION AT SCHOOL

18th to 24th May 2013

Liquid water droplets of fog suspended in the air, translucent frost crystals scattering light in many directions and arctic southerly winds have invaded Canberra this week. 

I am thankful for the heat of my electric blanket , scrumptious mugs of hot milo and Mum's hugs to comfort me during this dreadful weather.

This week I have mostly slept, I have not been able to attend school for normal lessons at all.  I have done a little work from home though when I can manage to keep my weary eyes open. 

On Tuesday however I was determined to go for a special presentation that had been planned from last Term.  Jarrett, Nalani and I were doing a special presentation to Senior School on Brain Cancer.  We began with an introduction and then showed an excellent movie that Jarrett had made as part of a Biology assignment on paediatric cancer and also investigated my cancer as part of it.  We then showed a power point containing facts about Brain Cancer, we even had music to accompany it to make it more effective. 

Nalani read some passages from my first book, followed by some information about my treatment and side effects.  We then spoke about the Fundraising that I am so passionate about and this lead to Jarrett then speaking about his City2Surf Run to raise awareness and funds for The Sydney Children's Hospital Foundation Brain Tumour Research Fund. 

Nalani reminded people that it is through raising awareness and funds that other cancers like Leukemia no longer have the high fatality rates they used to.  She emphasised that if more awareness and funds are raised about Brain Tumours then perhaps the same results could be achieved. 

I know that a cure will not be found in my lifetime, but I hoped that through the presentation that people would go out in the community and continue to raise awareness and funds so that one day my greatest wish of a cure being found will happen.

Speaking of fundraising, Jarrett has now managed to raise over $5000, this is just so incredibly splendiferous and through people's amazing generosity which is humbling to both Jarrett and I that research can be done. 

Here again is Jarrett's City2Surf Everyday Hero Fundraising link so that you can continue to pass it on to as many people out in the community as you can.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90
I know that he also has a Blog on his fundraising page which he updates.

I now have two nurses that are coming to visit me, Leah and Karyn and a new doctor Dr Anne, they are taking extra special care of me and helping me to feel more comfortable. 

At physiotherapy this week the extraordinary Kaitlyn worked on my neck which was just so sore and stiff.  Then I had a wonderfully warm heat pack on it which felt marvellous.  Heat seems to be so soothing for my pain, the person who invented heat packs and hot water bottles is a genius!

I also had an appointment with my Paediatrician, he is also pretty amazing and takes good care of me.  He asked me lots of questions and examined me.  He found that my swallowing problems are also been caused by a palsy of my palate, this is all part of my tumours pressing on my spinal cord, just like my balance, stiff neck and shaking problems. 

In footy tipping Nana is still ahead, I think she may just win this time.  I was so very excited to hear that the Tigers have finally won a game, it was very close and they beat Nana's Team, The Cowboys. 

I want to thank everyone for their lovely comments and stories on my Blog.  I think that the story that Carol wrote about the rainbow ribbon was just so inspiring and beautiful. 

This week I had Mum help type this with me, she is so much quicker, she is a touch typist. I may have to get her to do most of the typing for me in the future also.  I supervised that she was typing what I wanted to say. 

EFFECTS OF MS CONTIN

11th to 17th May 2013

MS Contin is a strong medication, that assists with chronic pain, it can also make you very drowsy which I have experienced this week.  I think that I have slept more than what I have been awake.  It does help the pain a little and I guess it also assists you to relax, so that you can rest. 

I have not been at school this week because I have not been well, it is a combination of the medication and my disease.  I did not get to have physiotherapy either this week which was extremely disappointing, however I know that next week it will be even more beneficial, that is what happens when you miss something one week, you appreciate it more the next time.

This week I said goodbye to my electric wheelchair, as I am having problems with balance and staying upright when sitting, it is no longer beneficial to me.  I have many fond memories of special achievements in that wheelchair.  The School Athletics Carnival last year doing the 100m and 200m in it and then this year doing the Cross Country. 

Despite not been at school, I have tried to do a little research on my English Novel - The Lord of the Flies and I have been working on my Sports Science Assignment, it is difficult though when your eyes just don't want to stay open!

My care nurse Karen came to visit me and check how I was doing, she told me that resting will help me and that is what my body needs to do.  She also filled in another sheet with me, like the one I did before, some things have changed since the last time we did that.

There were two rainbows in Canberra this week, I think that rainbows are the most splendiferous and beautiful creations, they give me hope of better days.

Thank you to everyone who has been donating and passing on Jarrett's City2Surf Fundraising page information.  He is now over $4000 and with eighty five (85) days until the big event there is more time to really make a difference. He has been training with dedication and a passion, this is so important to him.

Here are some facts again if you want to share them with others to encourage them to donate.

•      Many people are unaware that brain cancer is one of the most lethal yet understudied of all cancers.

•      It is the leading cancer killer of children and young adults

•      Worryingly little is known about this disease, other than some devastating statistics

•      No risk factors have been identified and no screening procedures are in place

•      It will take $50 billion over the next 30 to 50 years to perhaps find a cure for brain cancer.

•      As it receives the least amount of funding of all the cancers, it is only through community donations that we can ever hope of finding a cure

    Here is Jarrett's link to his fundraising page again, so you can keep passing it on or just follow how he is doing.  Again many, many thanks for your support. http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

    In footy tipping, Nana is still leading, although last week she got the least correct so there is hope yet for Pop and I.  My poor Tigers are sitting last on the ladder and the incredible Benji Marshall has been benched for this week.  I know that both the Tigers and Benji Marshall will find an inner strength and they will come back fighting, after all they are the Tigers. 

    'When it rains in my life, I look to the sky, for I know that after the rain, a rainbow appears and makes the day so much brighter'.

 

 



A Rainbow that appeared in the sky this week

 

 

 

 

 

 

STARTING NEW PAIN MEDICATION

4th to 10th May 2013

'Never underestimate your potential or your ability.  Believe in yourself, persist and when others give in, keep on going'

As many of you know, competing, enjoying myself  and inspiring others during the Summer Season doing Interclub, throwing Discus, Javelin and Shot put was important to me. 

Well sometimes surprises come your way and I received the hugest and most splendiferous surprise on the weekend when I was awarded the Athletics ACT 2012/13 U16 Female AWD Track and Field Trophy. It was such a huge honour and also very, very humbling.

The AACT Trophy which I was so humbled and honoured to receive

On the weekend in absolutely delightful Autumn weather I was also lucky enough to have a lovely afternoon tea with Tass (my number one salesman of my book) and Gloria  and my family at Adore Tea at Federation Square.  You should have seen the menu, there were so many options.  I ended up choosing to have an old fashioned strawberry milkshake.  Again they are extraordinary people that I have been fortunate enough to meet through my journey.

I only had school for one day this week as my Grade were gong on Camp.  Instead of going on camp, I rested at home and worked on some of my assessments tasks.  However I could not do too much as I have begun a new pain medication, the MS Contin.  It is a brand of a time-released formulation of morphine sulphate and I have to take it every twelve hours. 

I have had nausea and some vomiting, my care team don't think it is from the medication as it is a once off occurrence. If it was from the medicine it would be all the time.  One thing that the medicine does do and that is cause constipation, so I have had to increase my dosage of Osmolax. 

It has reduced my pain slightly but it has also made me extremely drowsy. I am drifting off to sleep regularly and it makes me also feel just a little hazy.

I met my new Occupational Therapist this week, her name is Bronwen.  She is lovely, nothing like Tom who I really miss but she has been very helpful.  I now have a new wheelchair which is much higher on the back and you are also able to tilt the back of it so if I am feeling tired then it can be tilted so I can rest.  I also have cushioned toilet seat, it makes the gap in the toilet smaller, you see I was virtually falling in every time I went, which was a really uncomfortable feeling.

This week I was also able to have physiotherapy with Kaitlyn, she worked on my ultimately tight and sore neck, gently releasing and massaging it to provide some relief.  Then those absolutely marvellous heat packs went on my spine, they are truly magical. 

On Tuesday it was Dad's Birthday, we had a lovely day he had the week off work to spend with me and we played a game of upwords and then watched a movie together.  We spoilt him with a dinner of Pizza and the ladies at work gave him the most scrumptious coffee cake. 

Sunday is Mother's Day, it is a special day to celebrate and thank our mother's for the love and care they have shown us all our lives. Happy Mother's Day to all the extraordinary Mother's who follow my Blog, I hope you have the most splendiferous day and get very spoilt.

I found this poem by an unknown author and I think it is really beautiful.

 

FOR MY VERY SPECIAL MUM

There are times only when a Mother's love
Can understand our tears,
Can soothe our disappointments
And calm all our fears.

There are times when only a Mother's Love
Can share the joy we feel
When something we've dreamed about
Quite suddenly is real.

There are times when only a Mother's faith
Can help on life's way
And inspire in us the confidence
We need from day to day.

For a Mother's heart and a Mother's faith
And a Mother's steadfast love
Were fashioned by the Angels
And sent from God above....I love you so much, Mum.

Thank you so very much to all the people who follow my Blog who have donated to Jarrett's Everyday Hero Fundraising Page.  He has been training extra hard and really wants to help me raise as much awareness and as many funds to try to help researchers find a cure for this hideous disease. 

Again here is the link to his page, please keep passing it on to family, friends, businesses, within your work place and at schools.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

In footy tipping I am now five behind Nana, she is increasing her lead each week.  Perhaps this will not be my year, just like my poor Wests Tigers who are now sitting in last place on the NRL Ladder.

Please know I appreciate all your wonderful comments that you leave on the Blog each week, you are each such an important and special part of my journey.

BACK TO SCHOOL FOR SECOND TERM, SEEING MY ONCOLOGIST AND A SPEECH THERAPIST

27th April to 3rd May 2013

'Even the smallest kindness can change the course of humankind'

Many thanks to my Blog followers who have donated to Jarrett's City2Surf Everyday Hero Fundraising page.  I am so proud and excited that he has already raised over $3000 and is the third highest individual fundraiser. 

Raising funds for paediatric brain tumour research means the world to me and it is my greatest wish in life that one day a cure is found for this horrible and hideous disease.  I don't want children in the future to have to suffer as I have. 

If there was a way for doctors to screen for brain tumours, if there were more effective treatments and obviously if the diagnosis of a brain tumour was like having a cold and you were told it could be fixed easily.  How splendiferous would that be?
 
Here are some more facts about Brain Tumours:

A brain tumour is a collection of abnormal "cells" in the brain which are growing out of control. These cells were originally normal brain cells. For no good reason, they started to divide and make more of themselves. This growing collection of cells is called a "tumour." As the cells continue to make more of themselves, the "tumour" gets bigger and bigger, like bread baking. Since there is not a lot of extra room in the brain, the tumour may start to squish areas of the brain, causing them not to work properly.

Brain cancer has a devastating impact on the lives of families, it’s a ‘secret and silent’ killer without substantial funding and resources for decades.

A "malignant" brain tumour looks very different under the microscope than the normal part of the brain where it started. The more unusual the tumour cells look, the faster they usually divide and grow, and the more damaging they can be to normal areas of the brain. A malignant brain tumour grows into the normal areas of the brain so surgery cannot possibly remove all of it. Further treatment with chemotherapy and/or radiation is necessary to have the best chance of keeping the tumour from growing back but they often do grow back.

I saw on the news that Dr Charlie Teo has been invited to speak to the US Congress about Brain Tumours and the need for funding for research to find a cure.  He is very passionate about finding a cure as are the many other researchers like my own Oncologist who is specifically working on paediatric brain tumour research.

To do research though funds are desperately required and unfortunately as Brain Cancer is not as common as other cancers it is often forgotten, yet it is taking so many lives whilst there has been wonderful progress for other cancers.

Please pass on Jarrett's City2Surf Everyday Hero fundraising page information to as many people as you can. I think I remember saying in a previous Blog if every Australian gave only $1 we could raise millions for research and come that much closer to finding that elusive cure.

This is the link to Jarrett's page http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

School went back for Term 2 , this the term for colder weather and mid semester exams.  In Sports Science we are continuing our work on Technology in Sport, this is such an interesting and diverse topic and on the first day back at school we got an assessment task to begin work on.  I am looking forward to researching areas of technological development in disabled sport. 

In English we are working on the novel Lord of the Flies.  The vocabulary in this novel is quite complex, which makes it often just a little difficult to interpret however the use of visual imagery, irony and foreshadowing is used cleverly throughout the novel. 

We have been looking at box plots, scatter plots and statistics in Maths.  I find that drawing graphs is difficult for me as my fine motor skills are not that great. 

Unfortunately, I did not have my usual physiotherapy appointment this week as Kaitlyn was not well.  I will be eagerly anticipating my appointment next week with those marvellous heat packs.  They always assist with my pain which tends to become worse with the cooler weather.

I did however have an appointment with my Oncologist.  It was an early start for me on that day and it really knocked me around. At my appointment my Oncologist discussed how I was, pain relief and school.  He has increased the dosage of my Ondansetron which is my anti-nausea medication from 4mg to 8mg.  You see I have experienced some vomiting and terrible nausea despite having my Ondansetron.  I am going to start taking some MS Contin which is a slow release medication for pain.  MS Contin is an opioid agonist product used for the management of moderate to severe pain it provides continuous pain relief, taken in the morning and in the evening.  I have to have it as granules as I am unable to swallow tablets.  School is something that was of real concern to him and he has given me advice on what I should do.  We have to meet with the school to discuss his advice.

After my appointment with my Oncologist, I then saw a Speech Therapist, who was just looking at my swallowing and offered some helpful suggestions.  She said if I am unable to swallow solid food then I could try some of the liquid drinks like Ensure, Up and Go and others like that.  She said to have food with gravy or sauce, to cut it smaller and blend it if possible.  She thought lots of stews and casseroles would be ideal. 

Next week from Tuesday, which is also Dad's Birthday, my grade are going on Camp to Tathra.  I am not going, so I will spend the week resting, doing a little school work, I am meeting my new Occupational Therapist and hopefully maybe doing something special one day. 

In Footy Tips, I have fallen behind Nana again, she is ahead by three, I am hoping that my tips this week will bring me up to her again.  I have heard that Benji Marshall is going to play for my Tigers, so here's hoping that they have a win tonight.  They are sitting in 14th place at present and that is so disappointing for them and for me. 

I received some more splendiferous rainbows of hope this week, I now have twelve rainbows hanging from my shelf which lift my spirits each morning when I wake and each night before I sleep.  These wonderful people are also donating money to the Sydney Children's Hospital Foundation Brain Tumour Research Fund with every rainbow, so they are truly inspirational and generous.

A wonderful surprise was receiving the most comforting and magnificent 'snugglybug rug' from Helen and her amazing friends who have created the most warm and precious rug for me to be snuggled in.  Many, many thanks, it has made a difference already.  

Wishing you an extraordinary week, many it be filled with many rainbowiffic moments and of showing kindness to others.

This is Jarrett's Everyday Hero Fundraising Page Poster

LAST WEEK OF SCHOOL HOLIDAYS

20th to 26th April 2013

Yesterday was an extra special day, a day for all Australians to remember those who have fought for our Country; those who have given us freedom, those who lost their lives and those that are still fighting .  They are truly courageous heroes. 

Anzac day is probably Australia's most important national occasion, it marks the anniversary of the first major military action fought by Australian and New Zealand forces during the First World War.

ANZAC stands for Australian and New Zealand Army Corps.  The Soldiers in those forces quickly became know as ANZAC's and the pride they took in that name endures to this day.

This week I had to show courage as I said goodbye to my extraordinary Occupational Therapist, Tom.  He has been so supportive in helping me with equipment for school and home and he has also been a splendiferous friend.  He is off to the Philippines to weave his magic over there, they are so lucky to have him.  In life we have people come into our lives who truly make a difference and he is one of those people who I have been blessed to have met as part of my journey.

Another guardian angel in my life is Kaitlyn, my physiotherapist, she is there for me every week, relieving me of my pain.  This week she worked on my neck, lower back and that ever troublesome right foot.  At the end of my appointment I had those absolutely warm and delightful heat packs on my neck and spine. 

I have not felt too well this week with pain, nausea and just not feeling very well.  Resting has been an important and much needed activity this week for me as next week is back to rush of school and other appointments.

The appointments that I have next week are one with my Oncologist from Sydney and after seeing him I have an appointment with a Speech Therapist who may be able to offer some suggestions to assist with my continuing and difficult swallowing issues. 

I have been listening to Lord of the Flies on a CD for English, we have to have it read before returning to School. It is not really the type of novel that I would select to read for enjoyment.  It is an extremely dark and heavy novel, however it is written well and the language used draws you into the story.

Many, many thanks for those followers who have so generously donated to Jarrett's City2Surf fundraising, I am so excited and proud to say that he has now raised $2500. It is so incredible and with 107 days to go until the event, he is hoping to raise even more money.  Here is the link again to his Everday Hero page, please pass this onto family, friends, neighbours, around your workplace, school and to local businesses.  Together we can make a difference.
http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

There were not football games last weekend so I am still leading the tipping by one.  This week I already have one right because I choose the Roosters against the Dragons in the Anzac Day match.  Nana and I have made quite different selections this week so that will separate us by the end of the round.  I am hoping that my Wests Tigers can pick themselves up and find an inner strength to push themselves to victory.

Many thanks to Lori and Merran who sent me the most magnificent parcel in the mail this week, it was an envelope filled with the most splendiferous drawings done by students in Prep/Grade 1, their teacher Emily told them about me.  They are so special and I will treasure them always, when I looked through them I thought they were the most rainbowiffic rainbows I had ever seen. 

I will leave you with some words out of a book that Tom gave me.

"I feel so blessed - of all the billions of people who could have shared my path, I stumbled across you."

SCHOOL HOLIDAYS - A TIME TO REST

13th to 19th April 2013

As I sit typing this entry; attempting to keep warm, the wind is howling ferociously outside blowing the lustrous, golden Autumn leaves from the trees and trashing them savagely onto the dry, brown grass. 

This is been a most horrible week for tragedy, these events have shaken many people around the world, of course the events I am referring to are:  the Boston Marathon Bombings and the Waco Explosions.  Innocent lives taken and people's lives changed forever. 

Before I tell you about my week, I must thank those people who follow my Blog who have so generously donated to Jarrett's City2Surf fundraising.  He is helping me in my continual effort to raise awareness and funds for Brain Tumour Research.  My life goal is to do as much as I can to make a difference.  A cure will not be found in my lifetime but my wish is that no children in the future will have to suffer as many others and myself have had to.  There is no screening tests for early detection for a brain tumour, the treatments are harsh and cause life long cruel side effects and there is no cure. 

Here are some facts for you to think about and please pass this on to family, friends and people in your workplace, we are the only ones who can make a difference as funding is virtually nothing for brain tumour research. 

• Brain tumours are one of the most under studied of all cancers, yet receives very little research funding. 
• No significant improvement has been made in survival rates in almost two decades.
• Brain tumours are now the leading cause of cancer death in children and young adults.
•  Brain tumours strike adults and children alike.
• No risk factors have been identified and no screening procedures are in place.
• Brain tumours carry the highest individual financial burden of all cancers with an average cost been five times higher than any other cancer.

Here is the link again to Jarrett's fundraising page, it would so splendiferous if he could be the highest fund raiser, imagine what a difference that could make to helping researchers work towards a cure one day for paediatric brain tumours.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

I have been relieved to be on School Holidays, School took so much of my energy last Term.  I enjoy learning and challenging myself but I am finding it more difficult as my pain and nausea increases.

This week brought a visit to my Paediatrician, who is so very caring, we talked about pain relief, school, my nausea and other issues which are caused by the tumours putting pressure on my spinal cord.  I also had my usual physiotherapy appointment, as always I was looking forward to it.  Kaitlyn is exceptional and able to provide me with some relief which I am so grateful for. 

The other visit I had was from my care nurse, Karyn, she talked about how I am feeling, school, medication and we did a chart that rated my pain, nausea, mobility, general well being, breathing and swallowing.  She is also very lovely and I feel very comfortable with her.

One of the extraordinary people in my support is leaving, Tom my Occupational Therapist who has done so much for me has a new job in the Philippines.  I am rather devastated as he is someone that I feel really confident and comfortable with.  I think he is splendiferous and so wonderful at his job.  I will miss him.

I have begun listening to Lord of the Flies, it is written by the English author  William Golding, it is about a group of English boys  stuck on an uninhabited Island. they try to govern themselves with quite disastrous results. It is about human nature and individual welfare versus the common good. 

Stay strong this week, despite any hurdles that may come across your path and many thanks again to those that have contributed to raising funds from brain tumour research.

END OF TERM 1 AND SOME SPECIAL FUNDRAISING

6th to 12th April 2013

We have had the most incredible Autumn weather here in Canberra this week.  There is no season in all the year so beautiful with kaleidoscopic colours, so radiant with the freshness of the breeze or as glorious with a gentle warmth in the air, it is a lovely time of year.

We had to wind our clocks back an hour, daylight savings came to an end.  It is so delightful to wake up to see the sun waking and rising also.  However, it is also just a little melancholy that the sun disappears behind the horizon that much earlier.

This was the last week of Term 1 at School, it has gone so swiftly, has been so incredibly busy and filled with many academic challenges but at the same time it has been enjoyable, as you know, going to school is important to me.

We have already begun to look at our next unit of work for Sports Science; which is technology and Sports, this is not just about computer technology but also technology in areas of equipment, playing surface and clothing.  I think that this unit of work is going to be extremely fascinating.

In Maths we are doing Statistics Work, doing cumulative frequency tables and graphs as well as box plots.  Once you understand how to do it, it is quite easy to master. 

For English we had to do our presentations for our Money Matters Unit.  I did a video presentation based on a current affairs type show for teens where I interviewed 'Steve' who was actually Jarrett who had just got his first job.  We discussed how he went about getting it, facts about tax file numbers, superannuation, employment conditions and pay rates and saving the money he would earn.  'Blair' who was Nalani, was an expert from The Australian Taxation Office, giving advice on tax file numbers.  It was tiring putting it all together but I was really pleased with the finished product.  The next thing to do is to read The Lord of the Flies, I am fortunate enough to have it on CD so I can listen to it rather than trying to read the extremely small print in the novel.

I had my wonderful physiotherapy appointment as usual.  Kaitlyn is so fantastic, she worked on my neck which has been terribly painful, then she did a little on my back and finally my foot.  She used the voltaren gel with the ultrasound again, this gives it some relief for a while. 

Apart from school and physiotherapy I have been helping Nalani study for her exams, doing a little knitting and some Sudoku puzzles. 

Now for some exciting news from a fundraising perspective:  Jarrett has decided to run in the City2Surf this year, not for himself but to assist me in my fundraising efforts.  The race itself is a 14km run along a challenging course in Sydney, including the famous 'heartbreak hill'.  It is on the 11th August and Jarrett has secured a Gold Entry place.  He is running as part of Team Kids to raise those so desperately needed funds for The Sydney Children's Hospital Foundation Brain Tumour Research Fund.  It would be so wonderful if he could raise a huge amount of funds, it is so important that one day a cure is found.  The race for Jarrett will be challenging, just as the journey is with a Brain Tumour.  This is the link to his hero page -http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90. 
Please consider supporting him, you are also welcome to share the link. I believe that together one day we can make a difference to the lives of children and their families who receive the devastating diagnosis of a brain tumour.

I feel so blessed also because I have been sent during the last week the most rainbowiffic and beautiful 'Rainbows of Hope'.  Helen from Hugs' n Kisses organised this extra special surprise and fundraising initiative for me.  People have sent me the magnificent rainbows with a $5 donation to go to the Brain Tumour Research Fund.  I have hung the rainbows from a shelf in my room and each morning when I wake and every night before I go to sleep I see them and they fill my heart with hope and love.  Thank you so very much to Helen, Christine, Annette, Marilyn, Janine, Lo and Liz and family, your kindness is astounding and I am so humbled by what you have done and will treasure those rainbows always. 


The splendiferous 'Rainbows of Hope' that people have sent to me.  I will treasure them always.

In Footy Tipping I have now slipped one behind Nana, who has now taken the lead.  Pop is still a little behind but he is very analytical in his picks so as the season goes on he usually catches up.  Poor Benji Marshall is out with a toe injury, the Tigers will miss his extraordinary style of football but I guess if they live by my saying of 'You Have to go Through a Storm to get to a Rainbow', they will find an inner strength to pull through this difficult time. 

If you see someone this week that is not smiling, share your smile with them, not only to brighten their day but to also create happiness in every ones lives.