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.
14 comments:
I have been following Dainere's blog for a long time and am humbled by her courageous outlook throughout her journey. She is an amazing girl and she is obviously part of a wonderful family. Love to you all, Nicole Maher xxx
Dear Dear Dainere,
We are sorry to hear that you are not able to write again this week , But rest assured that mum is doing a most splendiferous job.
So glad to hear that nan and pop could spend some time with you .
A belated Happy Birthday to You Jarrett, you truly are the most amazing brother that Dainere could ever wish for , its an honour to know you .
Ah Dainere so glad you are able to keep warm under the doona or electric throw blanket .
You continue to amaze Meryl and I , your determination is to be commended .
We are sure you love listening to mum reading your favourite stories from Shirley Barber .
Nalani and Jarrett , we wish you two the very best wishes in your exams next week .
Wow , Jarrett , the $9000 is simply awesome .
OH Dainere mum tells us that you may be catching nan and pop again in the footy , "" go girl "" as they say .
AH yes what an amazing idea for money raising at school bringing in the favourite bear or soft toy, and named in Theodores Honour , its awesome Dainere, even though you are unable to go to school you are still having such an amazing impact on things .
Well my dearest friend , we are still in North wales , We send YOU our sincerest LOVE , KISSES AND GENTLE HUGS . no internet access after Tuesday our dear friend , so stay warm and snuggly , we are thinking of you very much .
lots of love
stuart and meryl
xxxxxxxxxxxxxxxxx
Dear Dainere and all the family
We really enjoyed spending time with you all.
Although it saddened us to see Dainere so ill, we did leave with a memory that we will ever hold dear, of the beautiful smile we got from Dainere when leaving.
Dainere is creeping up in the footy tipping. In fact as of last night she was only 1 behind Nan.
Wonderful to see Jarrett doing so well in his fund raising, so proud of you Jarrett. Would have loved to see all the soft toys at school on Theodore day. Hopefully some photos were taken.
Always thinking of you. Keep warm and comfortable.
All our love
Nan and Pop xxx ooo
Dear Yvonne and Dainere,
All of you would have benefitted from your parents' visit.
It is good that Dainere can keep warm.
Is there a patch that Dainere could use for pain? One that is applied to the skin.
How lovely to have someone read to you.
Best wishes to Nalani and Jarrett.
Good to see Jarrett has improved.
What a great event to have: 'Theodore Day'!
Sending love and rainbows,
Michael and Clare xoxo
Hi my friends,
Loved ready your blog again this week, the teddy bear fundraising day sounds like a lot of fun and hope you did well with the fundraising.
Speaking of fundraising Jarrett you are doing so well, a fantastic effort, looking forward to your final amazing amount raised.
Sending loving thoughts your way Dainere, hope you are keeping warm.
Love Kay
Lovely Dainere and family,
I have heard from my daughter about Dainere's visit with her carers and family at school. She managed to say a few words, which was so brave and difficult. The school community is amazed and touched by your strength.
I hope Dainere you are staying warm and your pain is not too bad.
I pray you are dreaming sweet dreams of rainbows and smiles and feel the love of your family around you.
I have been inspired as usual by your blog and feel deeply privileged to have read your words.
I hope your brother gets better soon.
I wish we could all give you some of our health to make you better but this is not possible, instead I hope you feel the good wishes we all send your way.
Stay warm, loved and pain free
xxxx Monica
Dear Yvonne and Dainere,
Sending much love to Dainere and to all the family. Sorry to hear that Dainere was not able to write in her blog again this week.
Hoping that she is feeling warm and comfortable and the medication is helping ease her pain. Please give her a big hug from us.
Theodore Day is such a great idea and hopefully will be introduced at other schools as well.
Best wishes to Nalani and Jarrett for their exams. Well done Jarrett on the fundraising efforts so far.
With much love to you all. Always thinking of you.
Steph D and family xxx
Dear Dainere and Family,
Just a quick message from Roanoke, Virginia, USA.
How lovely for Nan and Pop to have such a beautiful memory during this time. I used to read to my girls - Martha B Rabbit, the faires cook- it was always a Shirley Barber favourite.
Still lots of rainbows over here sending you love and peace.
Keep warm,
Love from afar,
Catherine and Ollie the cat who has taken to sleeping in the linen cupboard while his mummy is away. Xoxoxoxo
Dear Yvonne,
Thank you for your message this week, keeping us up to date with Dainere and the rest of the family.
The visit of your parents would have given you a much needed boost. Grandparents are special people.
I know that there would have been much love in your home on Jarrett's birthday.
At times, when I am assessing a situation, or wondering how to cope, I find myself looking into the middle distance. Perhaps this is what Dainere is doing.
Michael mentioned patches for pain. These can be very beneficial. Have you heard of them?
I hadn't heard of Shirley Barber, so looked her up. Such beautiful illustrations. Stories that are so much more gentle than Lord of the Flies!
I hope that Jarrett is feeling better. It is important to rest when you have shingles. His fundraising is doing excellently.
Best wishes to Nalani and Jarrett for their exams this week.
Theodore Day - what a wonderful idea. The school has been very generous with its donations. It is obvious that they think very highly of your family.
I feel honoured to be part of Dainere's journey and to have actually met her and you.
The electric throw blanket sounds so cosy.
My love to you all and a warm hug for Dainere.
Elizabeth xoxo
Hi Dainere,
I am sad that you could not write again this week but your mum is doing a great job.
It would be good having Nan and Pop stay with you, it is really encouraging when close friends and family make time to see you.
Happy birthday Jarret! And an absolutely HUGE congratulations on raising so much money!
It is very sad to hear that you are in pain but hopefully you will be relieved and that the doona/blamket is snuggly, safe and warm.
Great idea for fundraising! Theodore would be proud.
Shirly Barber is a great author, I have quite a few of her books, loved reading her as well.
Stay warm, know that you are loved and pain free,
Love,
Steph J (in case of any confusion, when I usuallly post I write as Steph but I saw that there is another Steph as well.Sorry about any misuderstanding this may have caused.)
Hello Dainere, Yvonne & family,
Thanks again Yvonne for blogging. I just learned Tigers won today so immediately thought how stoked Dainere will be! I think my round has been shocking again but it's fun tipping.
I am going to watch the Telethon tomorrow, as recently my son & I spent a weekend in C1North while he had his broken collar bone treated. I believe that is where Dainere & Charlotte Wyse have spent time so I felt a connection to the ward through them. Please give Dainere a big fat hug from me, I'm always thinking of the Anthoney Family.
There is no batter nurse or carer than your Mum & family so keeping warm & resting, is the best comfort you could be in.
Glad Jarrett is feeling a little better, good luck in your exams Jarrett & Nalani - you are to be admired.
Lots of love always, hugs & kisses
Fran xoxox
Hi Dainere and Yvonne
Keeping warm under an electric blanket certainly sounds like a good idea as this Canberra weather gets colder and colder. Great to hear Dainere's determination remains unchanged. Her amazing attitude inspires us all.
Wonderful to hear that Jarrett's birthday was a day full of love.
Dearest Dainere and precious family, May a beautiful rainbow surround your house, much love and healing sent to you all. Susan xx
Dear Dainere and family,
You are such a special family with so much courage. I am sorry that you are not able to write Dainere but it is great that you have taught your Mum so well... Yvonne, you have written beautifully.
Stay warm and cosy Dainere and I hope your medication can give you the pain relief you need.
We are all sending you lots of love and very special rainbow wishes.
Lots of Love
June, Graham and Louise Ellery
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