DAINERE'S RAINBOW BRAIN TUMOUR RESEARCH FUND LAUNCH

SPECIAL ANNOUNCEMENT FOR DAINERE'S 16TH BIRTHDAY 8/2/2014

We would like to announce the launch of Dainere's Rainbow Brain Tumour Research Fund.  Dainere's Rainbow Brain Tumour Research Fund was established in conjunction with The Sydney Children's Hospital Foundation using funds that Dainere so passionately raised during her short life and Jarrett's amazing City2Surf fundraising.  These funds will be used to assist the research team lead by Dr David Ziegler (Dainere's oncologist); research will be undertaken on three research projects as part of Dainere's Fund. Dainere’s Rainbow Brain Tumour Research Fund maintains a lifetime commitment to helping eradicate this number one cancer cause of death in children. 

We are dedicated to raising awareness of paediatric brain tumours and raising money to fund research in memory of our most precious Dainere and hopefully seeing her greatest wish in life become a reality. 

Thanks to the wonderful staff, especially John at Transit Graphics a splendiferous website has been created http://www.daineresrainbow.com.au/ and there is also a donation page which can be found at https://give.everydayhero.com/au/dainere-s-rainbow-brain-tumour-research-fund you can make a donation at anytime to assist Dainere's greates wish in life become a reality and help Dr David Ziegler and his team continue their research to find less devastating treatments, screening methods and hopefully one day a cure to this most hideous disease that stole Dainere's life.

LINKS ABOUT DAINERE

TO MAKE IT EASIER FOR BLOG FOLLOWERS TO READ THE LINKS TO STORIES ABOUT DAINERE'S JOURNEY WE HAVE DECIDED TO SEPARATE THEM.

PLEASE READ OVER THE MANY STORIES AND SHARE THEM WITH OTHERS TO HELP SPREAD AWARENESS ABOUT PAEDIATRIC BRAIN TUMOURS THE NUMBER ONE CANCER KILLER OF CHILDREN UNDER THE AGE OF 16. 

Heavenaddress page
http://www.heavenaddress.com/Dainere-Monique-Anthoney/443600/

Dainere's Journey: The Anthoney Family's Story (video)
http://www.youtube.com/watch?v=3SzXQkXs0w8

City2Surf for SCHF-Team Dainere's Rainbow
https://city2surf2014.everydayhero.com/au/schf-team-dainere-s-rainbow

Orbit Diagram
http://ssd.jpl.nasa.gov/sbdb.cgi?sstr=308306;orb=1;cov=0;log=0;cad=0#orb

Farewell to a teen who touched our hearts - Canberra Times
http://www.canberratimes.com.au/act-news/farewell-to-a-teen-who-touched-our-hearts-20130628-2p1o4.html

Interview with Carol Duncan from ABC Newcastle
http://blogs.abc.net.au/nsw/2010/05/the-girl-who-gave-me-a-rainbow-dainere-anthoney.html?site=newcastle&program=newcastle_afternoons

IBTA page
http://www.theibta.org/DainereAnthoneyBookReview.html

Blessings - A Visit with Dainere Anthoney
http://www.happychild.com.au/blogs/carolduncan/2010/09/20/blessings-a-visit-with-dainere-anthoney

meet dainere
http://ofdphoto.com/2010/04/19/meet-dainere/

The girl who gave me a rainbow - Dainere Anthoney
http://blogs.abc.net.au/nsw/2010/05/the-girl-who-gave-me-a-rainbow-dainere-anthoney.html?site=newcastle&program=newcastle_afternoons

Zed helps out with Dainere’s new book
http://citynews.com.au/2012/new-book-from-unstoppable-dainere/

Dainere's Journey
http://blogs.abc.net.au/canberra/2010/04/danineres-story.html

Dainere's story
http://www.abc.net.au/news/video/2010/04/12/2870344.htm?site=Canberra

Hansard ACT page
http://www.hansard.act.gov.au/hansard/2010/week06/2478.htm

Inspiring teen's 'special list'
http://www.canberratimes.com.au/act-news/inspiring-teens-special-list-20120713-221nz.html

Ash from Planet You's "You Crew" interview
http://www.youtube.com/watch?v=4aPcEV2T4C8

Get to a rainbow
http://www.abc.net.au/news/video/2010/04/23/2881751.htm?site=Canberra

Little Ray of Sunshine
http://www.newcastleschild.com.au/Stories/Stories/Little-Ray-of-Sunshine.php

Brainstorm for a Cure
http://www.brainstormforacure.com.au/

Giving Hope
http://blogs.abc.net.au/canberra/2013/07/sarah-mamalai.html

Book Review
http://www.theibta.org/DaineresReview.pdf?utm_source=MailingList&utm_medium=email&utm_campaign=IBTA+ENews+June+2013

Goodbye
http://lkrms.org/x100-365-114-goodbye/

Athletics ACT page
http://www.athleticsact.org.au/aact-news/dainereanthoney

City News
http://citynews.com.au/2013/digital-edition-august-1/ (page 3)

Teenager runs to honour his sister's memory
http://www.canberratimes.com.au/act-news/teenager-runs-to-honour-his-sisters-memory-20130812-2rsr7.html

Brainstorm for a Cure - Can you help?
http://m.youtube.com/watch?v=0l36nzOxfOY&desktop_uri=%2Fwatch%3Fv%3D0l36nzOxfOY

Dainere Anthoney and Jarret Anthoney the Young Canberrans of the Year
http://www.allnewsau.com/news/dainere-anthoney-and-jarret-anthoney-the-young-canberrans-of-the-year/related

Dainere and Jarret Anthoney named Young Canberran Citizens of the Year
http://www.canberratimes.com.au/act-news/dainere-and-jarret-anthoney-named-young-canberran-citizens-of-the-year-20131117-2xpcm.html

Neurosurgeon helps raise funds for brain cancer cure
http://www.canberratimes.com.au/act-news/neurosurgeon-helps-raise-funds-for-brain-cancer-cure-20131122-2y1x1.html

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"