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.
16 comments:
Dear Dainere
It is heartbreaking for us to hear how your journey is now affecting you. You have shown such courage and determination since your diagnosis and have inspired so many people including us. We are so proud to be your Nan and Pop.
What a wonderful birthday present for me (Nan) to have Jarrett receive such a high and deserving award.
We are praying for you all every day.
Nalani and Jarrett you are champions coping the way you have during such a stressful and heartbreaking time. We send our love to you all.
So proud of you too Yvonne, we know how strong you have been throughout this ordeal.
Saw short verse that would apply to Dainere -
Give your smile to the World
But don't ever let the world
Take away your smile.
All our love
Nan and Pop xxx ooo
Hello Anthoney Family
So thrilled to hear that Jarrett received such a prestigious award on his Nan's Birthday. Congratulations Jarrett. Thank God your exams are done too. Hopefully Nalani's are over with now as well. It is a gruelling time for your family.
My poor little Dainere. Mum is being the best nurse & P.A. indeed. Know that I am thinking of you 24/7, there have been rainbows out this week with the crazy weather, I wake during the night & think of you & your family. Hopefully you are snuggled up warmly with Mum & Dad & Tinkerbelle. God Bless, your are splendiferous Dainere!!
My love to all the family, Nan & Pop too. May you all find love, comfort, faith & strength with each other at this time.
Love always, Fran xoxoxo
Dear Dainere,
I have read your blog for a long time and you are inspirational. I have also experienced cancer and have helped raise money for such an important cause just as you are doing. This last week we have had many rainbows where I live in Victoria and I always think of you.
Well done to Jarrett and Nalani for doing so well with their exams.
Dainere, I miss your splendiferous updates but Mum is doing a wonderful job although not quite as well as your wonderful writings.
Myself and some friends would love to buy copies of your books. Any chance of some more being printed?
There's a rainbow in the sky, all the time, don't be blind (Ziggy Marley.
My love to you and the family.
Dawn
Dear Stephen, Yvonne, Nalani, Jarrett and Dainere,
Yes, Dainere's gentle soul and exquisite words - such a beautiful description Yvonne - have made a great difference to my life.
It is good to hear that the syringe driver is giving Dainere a certain amount of comfort.
No one could leave after meeting Dainere without the belief that this is definitely a very special person, so full of courage and determination, and who, despite all her personal suffering, can still gift those who love her with her unique smile.
Jarrett, you would have tried your very best with your exams and know that you will be rewarded with well-deserved results. Congratulations on receiving your award. What a great honour.
Nalani, one exam to go and then, hopefully, time for a rest. You certainly deserve that after all your wonderful efforts.
Jarrett's fundraising continues to do so well. That gives us all a boost.
Much love to you all. You are in my prayers every day.
Elizabeth xxxxxooooo
Dear Dainere,
Here is a poem I wrote, inspired by your saying “You have to go through a storm to get to a rainbow”.
A poem for Dainere…
Sometimes you have to go through hard storms.
Storms that are so difficult they take away almost all the warmth.
And even though life can be terribly hard,
And sometimes you will be forever scarred,
Looking forward is the key to win,
To show the world you can still show your grin.
And when the rainbow comes out from the dark,
In a beautiful, colourful rounded arc,
You will feel your courage, feel the might
Because you have overcome the powerful blight.
Pain, sorrow, misery, grief
Will become happiness, joy, cheer and relief.
All you have to do is hang in there,
Keep smiling, and don’t be scared.
For the rainbow will come soon, to shine above,
The rainbow will come soon, to sing you love.
You have inspired so many people, both young and old
You have shown so much bravery, shining like gold
You are a fighter, a writer, a bright star in the dark sky
Keep smiling, forever, as the world goes by and by.
Keep smiling Dainere! You are such an inspiration and your courage is extraordinary. I admire your bravery and your strength, your positive attitude and your gift in writing which makes you an amazing person. Your saying “You have to go through a storm to get to a rainbow” is so true, and it is one of my favourites.
With love,
Claire
Hi Dainere,
It is heartbreaking to learn of how the disease is affecting you, you have beaten the odds so many times and you inspire me each and everyday.
Congrats Jarret on the award, your exams and fundraising! Your family would be very proud.
Good luck with your last test Nalani.
I saw a beutiful rainbow this afternoon, it brightened up my day.
love Steph J
Dear Dainere
Our thoughts are with you and we are sad that you are not feeling too well....lots of hugs Nick and Cristina Arganese
Thank you again Yvonne for your updates. It must be such a very tough time for you all, but you have a very splendiferous family!
Congratulations to Jarrett, and may this coming week see more smiles from Dainere
Dear Dainere and Yvonne,
Thank you for this update.
It is good that Dainere is receiving some comfort from the syringe drive.
Dainere's smile is really special.
Best wishes to Nalani and Jarrett with their exam results.
I'm sure there will be more donations.
Just heard that the Tigers and Raiders are 12-12 in the pouring rain! Come on Tigers!!!!
Congratulations to Jarrett for being honoured with such a prestigious award.
Love to all.
Plus rainbows and hugs for Dainere.
Michael and Clare xoxo
Dearest Dainere, Theodore and all the wonderful Anthoneys
As insidious as this terrible disease is, it will never take our beautiful Dainere away from us. She continues in all that we do, in every rainbow we see and in all the awesome memories we have of her.
Dainere, your beloved Tigers had a win for you tonight. They must have heard you cheering for them!
Nalani, good luck for your final exam on Monday. You will be brilliant as always, such a professional in all your studies.
Jarrett, enjoy your well earned rest and holidays now. Refresh and enjoy time with your wonderful family as you prepare for your big run in Sydney.
Yvonne and Stephen, with you every step of the way...friends for life. Your strength and love for your family is truly inspiring. It is no wonder you have such amazing children...they learnt from the best.
Love Gail xxxxx
Dearest Daniere and Anthoney Family,
We are home safe and sound- back to this cold weather. So glad to hear you are snuggled up warm and being so lovingly cared for.
You must be all so proud of Jarrett's award. Good luck to Nalani for the last of her exams.
Yvonne and Stephen , your three children are all remarkable young people and a real credit to you both.
Sending you all love and strength this week,
Catherine and Ollie the cat xo
Dainere,
You are the most beautiful person I have ever known. Inside and out you are simple beautiful. You are an inspiration to everyone. I hope you will remember that you have touched many more lives than you may think.
Your courage and spirit is amazing.
After this journey, you have yet another to go through, and I hope that it will be everything you've dreamed it will be.
X
Dear Dainere
I read your book many years ago and since then have religiously read your blog (so much so that I have it saved in my favourites)!
You are such an inspirational young lady and as the mother of a young girl, I often think that - if my daughter grows up to have even half the amount of strength and courage that you have - I would be very proud, indeed.
It amazes me when I hear your story mentioned by others in passing conversation, and I think that that is evidence that your journey has touched so many people.
I think of you often and hope that you see many more rainbows.
xxx
PS - I always wanted to know: how do you pronounce your name?
Thank you for your kindness in updating this amazing blog
It is clear where Dainere gets her strength from
My heart breaks to imagine your pain watching your perfect precious girl struggling.
I pray you and your family continue with strength
Dainere has touched so many, she is truly amazing, in fact she is splendiferous
xxx Monica
G'day Steve and Yvonne,
I haven't seen you for some time so I just wanted to let you know that you guys are in my thoughts and prayers. I wish you all every bit of the strength you need to help you through this heartwrenching time.
Dainere and her story are truly remarkable. She is an inspiration as is your wonderfully strong family.
Take care, Luke Roberts
Dear Yvonne, Steve, Jarrett and Nalani. You are such a wonderful family and have given Dainere such a rich life. Enjoy your remaining time with her and I am glad her pain is being managed. Know that you have all made such a difference for so many.
Susan
on behalf of the ACT BT support network.
www.btaa.org.au
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