Saturday, June 15, 2013

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"

24 comments:

Anonymous said...

Keep smiling Dainere, I know it means so much to your family.

Thank you for dedicating so much of your time and effort to such an important cause. You have already made such a difference and I have no doubt will continue to do so long into the future. There will be many people like me who will continue to support brain tumour research and awareness associated with you. Every time you see Jarret's fundraising efforts climb a little bit higher, be so proud of what he is doing for you and what you have done to inspire him to put so much effort into such an important cause.


M.

Luke Arms said...

Oh Dainere, this journey just gets harder and harder, doesn't it? I'm sorry I haven't commented here for a while, but I've been reading your posts and have been so blessed by the rainbows you're always able to paint with your words, regardless of your circumstances. Your beautiful soul is so very evident, even through the words of your mum, even though you mightn't feel very beautiful right now.

You're a hero in so many ways, and your impact on those around you is profound and immeasurable. That your faith in the God who loves you like no-one else can has remained unshaken as this terrible journey has unfolded is so incredibly encouraging... How wonderful that another journey is ahead for us... Free of pain and tears and disease and weakness!

So much love from us to you and your beautiful family.

Luke, Michelle, Josiah, Katherine

Anonymous said...

You're a fighter Dainere, you've defied the odds for so long now, keep on fighting. Whenever I find something difficult or I am in pain I always think of you motto, you have to go through a storm to get to a rainbow and I find the strength and courage within to keep going on and keep fighting. You're blog posts are so touching and they always hit that soft spot in all our hearts. You are an inspiration to us all and I am honoured to write this. You have made a huge differance to the world in a way that is impossible to fully understand because of its' enormosity and everyday you never fail to stop inspiring me.

It may make you happy to know that this year for Y7 NAPLAN testing we had to write an exposition on someone we believed should receive some recognition because they are a hero. I chose to write about you because you have touched my life in ways I never thought possible and know that you will always be a hero no matter what happens. May God's love always be with you and may He hold you in his arms. You are amazing.

On a totally different note, listen to the song called 'Keep Holding On' it is really inspirational and I love it.

IF (by Ruyard Kipling):
IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build 'em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: 'Hold on!'

If you can talk with crowds and keep your virtue,
' Or walk with Kings - nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run,
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man, my son!

God bless, and all my love
Steph J

Anonymous said...

I hope the little bit of sunshine outside today made its way into your home.

Blessings to you all from one Burgmann family to another xxxxx

Bronz68 said...

Beautiful Dainere and your lovely family. Each week I have been following your blog and stay marvelled at your strength and connectedness of you and your family. My prayers are with you all at this time.

It has been raining a lot here in Echuca and we have seen lots of rainbows. Each time I see one I think of you and smile. I think that I always will.

Love lots
Bronwyn Chatfield

Greg Jericho said...

I wish I could give your hand a squeeze too Dainere. You provide me with such strength. You are a blessing to your family and to all who have come into contact with you - even if it is only through your book or this blog.

Michael and Clare said...

Dear Dainere and Yvonne,

Thank you for this update.

You are in the best of hands Dainere.

All the best to Nalani and Jarrrett.

Good on you Dainere for reaching the lead in the footy tips! Jarrett will do his best for you.

Sending all our love and rainbows.

Michael and Clare

EDS Warrior said...

Dear Dainere,

You're such a beautiful princess and it breaks me heart to see you suffering and having to battle so hard.

I battle a monster myself, although it's a genetic condition not cancer, I know what it's like to know there is no cure and to be in pain. Sometimes I have trouble swallowing too.

I just want you to know that in my darkest days you have inspired me and the one of the most special things I own is your book. You even signed it!!

Get plenty of rest beautiful girl and show that smile when you can.

Know that you have made a difference in the brain tumour and cancer community. You're an inspiration and you have changed many lives.

Best wishes to Nalani and Jarrett for their exams.

Sending you rainbows!
Rhi

Anonymous said...

Good morning, from icy Blackheath, to all of the Anthoney family,
My message this week will be brief as I'm using my mobile phone and the letters are so small. I'll blame the phone, not my eyesight!
I'm glad to hear that you are getting pain relief right throughout the day Dainere. Yesterday I closed a window on my finger and went on about it, until I thought, ' offer it up for Dainere'.
Jarrett, it's good to hear that you are well enough to be running those distances. My muscles ache at the very thought!
My love to you all and my prayers for strength for an already amazingly strong family.
Elizabeth xxxxxooooo

Anonymous said...

Dearest Dainere,

I hope that you and your family can draw strength from the love and thoughts that are coming your way from all around the world. You have travelled such a difficult journey and we all hold you in our hearts and prayers as you travel this most challenging part.

Stay warm in the cocoon of love that surrounds you,

Love always xoxoxoxoxox

Anonymous said...

Hello family,

Hi Dainere, Your Mum is being a splendiferous Personal Assistant, keeping us informed on all the matters that we care so deeply about.
Nalani & Jarrett, keep up the amazing study for your exams. I'm so glad that the pain medication is being administered by the syringe driver. Luckily you can communicate to your family by squeezing their fingers - this is a comforting sign for all.
I send you my biggest, warmest hugs & prayers each day,& know that we are all so much more aware of brain tumour research because of your efforts. Bless you!
Lots of love always, Fran xoxoxo

Gail said...

To my dearest sweet friends Dainere, Theodore and the entire Anthoney family,

You are showing some serious blogging talent Yvonne on behalf of Dainere. You write in such a way that I feel as though I am there with you.

Keep inspiring your wonderful siblings Dainere as they study hard for these exams. They devote themselves to their studies as a sign of their love and admiration for you and your amazing parents. You are a part of everything they do in life and their achievements are yours too.

I am glad you now have your medication through the pump as it will allow you to relax a little more and not be so anxious about having to swallow when it is so difficult. I am so very proud of you for making such a mature decision xx

After today's lovely winter sunshine there is a chance of some showers early this week which means more gorgeous rainbows to come your way.

I'm going to leave you with one of my favourite messages....

Walk on a rainbow trail;
walk on a trail of song,
and all about you will be beauty.
There is a way out of every dark mist,
over a rainbow trail.

Navajo Song

Thank you for the lessons you have taught me about humility, perseverance, resilience and seeing beauty in the most unexpected places.

You are constantly in my thoughts and prayers Sweet Pea,

love Gail xxx

Anonymous said...

Thank you Yvonne for keeping us all informed about Dainere's journey.

I know so many people love you Dainere and wish you were not suffering.
You beautiful smile lights up a room so keep them coming and we continue to send our love to you and your splendiferous family.
Again Jarrett is doing a wonderful job on your behalf fundraising and I wish him and Nalani all the best as they sit exams.
Lots of love,
Kay Harrison

Anonymous said...

To my sweet little author buddy, I am thinking of you each day. This evening I watched the sunset and admired the vibrancy of nature as it lit the sky in flames of orange. It wasn't a rainbow or a storm- it was just simply a stunning wash of colour and it made me smile and think of you. Yvonne thank you for the wonderful job you are doing updating Dainere's blog and keeping us informed. Sending hugs to you all.
Tracey Hawkins xxx

Anonymous said...

All our love to you Dainere and the family. You are such a brave girl and we are thinking of you at this time of struggle. Keep warm and I wish for sunny skies outside your window.

Stay strong.

Love the Skvorc family xoxoxoxox

Anonymous said...

Dainere,

As usual your decisions show strength, I am glad you are using the syringe driver, I hope it helps your pain and you can dream of rainbows leading to bright beautiful skies.

My thoughts go to your lovely strong brother and sister who are trying to get through exams.

You are such a special young lady and you have and continue to inspire everyone you touch.

You are loved Dainere

xxxx Monica

Anonymous said...

Dearest Dainere and wonderful Anthoney Family,
These days must be so hard for you all but your love and togetherness shine through. Dainere, your precious gift to this world will be something I carry with me throughout my life - Thankyou !
We are due to return to cold old Canberra on Thursday after our wonderful trip in the US. We are visiting with Andrew's sister and her family and I know when I get home Ollie the cat will be very suspicious of the funny smells I bring with me - Dublin and Puff the Americian cats send their love too.
So glad your pain will be under a bit more control with the syringe driver.
Love and furry hugs,
Catherine and Ollie the cat xoxoxo

Ben "TheFonz"Barry said...

Bikers across the world know who you are now, and rest assured we are all praying that the man upstairs changes his mind and decides to let you stay a while longer.Praying for ya kiddo

Anonymous said...

Dear Dainere,
Thankyou for your courage and strength in sharing your difficult journey. My wife (Cookie KX Bikers) was diagnosed with a brain tumour (Craniopharyngioma) about 20 years ago. The doctors were fortunately able to remove it but it did leave her with a number of health issues. We see each day as a blessing and a struggle combined and as time has moved on the struggle has become just that bit harder with each day. It has been that struggle however that has allowed us to recognise others in life who struggle. Many years ago when doing it pretty tough Cookie was drawn to Kings Cross, in need herself what she found there were many others also in need, she also found Animal, Feral and Steptoe KXBikers and with their help was able to draw on her own strength forged through her struggle to reach out to others, she ran a food van providing meals to the homeless and more importantly a smile and recognition of all as people with their own struggles. She forged friendships, reached out and touched many lives, something that I can see just from this blog alone that you have also done. Somehow the struggle is intertwined with a blessing and that blessing extends way beyond what seems possible. So again thankyou so much for sharing your struggle for in doing so you have blessed many lives.

Sparx

Dianne said...

Dainere,
There was a storm this evening, I was thinking of you and the personal storm journey you have been on for so long and your rainbow is waiting for you. All the colours of your smile and face when lit up with happiness.

You are the hero - to you Dainere thank you, we are all grateful for your example of humility, determination and consistent efforts to raise funds for Brain Tumour research.

Jarrett shows the same determination and has raised the funds and interest in eradicating such cancer in the future.

Anonymous said...

Dear Dainere,

Always thinking of you and sending much love to you and the family.

Hoping that the syringe driver is giving you better pain relief.

You are such an inspiration to so many people and you continue to teach us all so much.

I have a little plaque that is very special to me as it belonged to my grandmother. It has a verse on it about rainbows which always makes me think of you.

It reads:

Hope is a Rainbow (author unknown)

Hope is a lovely rainbow
With colours clear and bright
Sparkling like a thousand diamonds
Inspiring to the sight

Sending you many rainbows.

Our thoughts and prayers are always with you.

Love
Steph D, Mauro, Luke and Louisa xxx

Anonymous said...

To dear Dainere
Sending you lots of luv and strength to you and your family.
You are a delightful young lady and an inspiration to all of us. I saw a splendiferous rainbow yesterday and immediately thought of you and your beautiful big smile.
Luv and hugs Sandra xoxox

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