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.
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.
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.
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"
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.
