Tuesday, October 26, 2010


24th to 26th October 2010

Having to be without Mum was absolutely devastating, I felt like I was been punished but for what crime I do not know.  I hugged Theodore as tightly as I could and he gave me a little comfort in this cruel situation that has left me feeling so confused and hurt.

When Mum arrived on Sunday at 9.30am we both hugged each other in the tighest hug you could ever imagine.  When Mum is with me I feel secure and safe when she is not there I am so scared of what may happen to me.  I have felt like a prisioner, treated like I have committed a crime but it is not me who is in the wrong, I have done everything possible in my journey to do the right thing, listening to the doctors, being brave and taking each painful procedure in my stride. 

I was told to walk which I am able to do a little of, but I was given no support and I do not have my rollator here so I was extremely off balanced and wobbled, my right ankle has been re-injured and is swollen and painful.  The fact that I have had a Brain Tumour has not been considered, I am not an ordinary twelve year old, I have been left with side effects from my tumour and the treatment, this is something I can not help.  It did happen and I can not change that so I am so confused as to why now it is not cared about.

Please if you are having chemotherapy and lose more than ten per cent of your body weight request that your doctor do something about it, don't just accept that you will pick up later.  Also when you finish all your treatment ask that you are given a dietary plan, I ate well but it was not enough apparently and now I find myself in this dispicable situation.  I want to help others so that they won't have to go through this. 

Dad arrived on Monday together he and Mum can work as a united front to sort this all out.  My paediatrician at home was looking after this, what has happened is not right.  Why am a pawn in the middle of this and being categorised without a proper assessment, I am confused and scared.

My ankle is so sore and swollen, I have to go to have an xray, perhaps some serious damage has been done to it.  Another hurdle and just when it was going so well, this whole experience has been such a horrendous storm but I still hold the hope and remain positive that my rainbow will appear very soon and my life can bring me some happiness. 

Life is too precious to waste, there are so many things I wish to do and this is wasting my time, that I can not go back and retrieve.  Thank you for all your support, comments and prayers I hope that I can update you with some positive news soon.


Anonymous said...

Our most precious granddaughter Dainere, no you certainly do not deserve this treatment. We have been keeping up with the goings on and all that has been happening to you. We have shed many tears and lost hours of sleep along with you.

What is our health and hospital system coming to? This is almost third world treatment. This would never have happened if your Canberra medical team had been kept in the loop as should have been.

How easy it would have been if you had been given the advice you had requested on several occassions. Only 1 month ago you were given some help with a special drink and from then on you started to put on weight. You are definitely not in the category they have placed you.

Keep up the courageous spirit you have shown all along. Hopefully you will be out of this nightmare soon.

Hopefully steps will be taken to ensure this doesn't happen to anyone else in your situation.

So angry that after all you have been through, you had to be the one that copped this.

We love you dearly and are praying for your speedy return to home and your continuing build up to good health.

All our love
Nan and Pop xxx ooo

Anonymous said...


I feel very outraged on your behalf that this is happening to you. As a mother and a nurse I can imagine you do feel scared and confused.

You have done nothing wrong, you have done everything right. I know you feel like you are being punished but it is just you are seeing the hospital system at its worst. Children shouls not be separated from their main support people, in your case your mum.I am glad Theodore gives you some comfort.

You are a very courageous girl and your courage and strength is inside you and no-one can take that away from you.

I hope your mum and dad can sort this out and you can come back to Canberra to be treated again by your paediatrician here. Are there any nice girls in your room to talk to?

We are all sending our love and thinking of you.
Remember "Walk with knowledge, that you never walk alone"


Anonymous said...

Just an addit: I have contacted the hospital to state my outrage, maybe some other supporters can do this as well. They have an email address as well as a telephone number.

If any other followers are interested, we can flood them with our annoyance: try and talk/email CEO or Director of Nursing.

Anonymous said...

Dear, dear Dainere,

As if you hadn't already been through more than enough!! What an awfully horrible thing to be happening to you. I am so sorry that you feel like a prisoner and not to have Mum there makes it even worse...

Hope the x-ray goes well and that you can have some treatment to ease the pain and swelling.

This is a terrible storm you are travelling through at the moment.... there must be a bright rainbow up ahead SOON.

Sending love and prayers,


Anonymous said...

Hang in there Daniere.

You will get through this!!

x Christine

Anonymous said...

Hi Dainere, yes being without mum would be a great strain for you , mum has been your main carer through all of this so I can appreciate what you say.

You have done nothing wrong , and unfortunately you are seeing our health service in a bad light right now , which should not be the case.

Oh dear yes its so hard isnt it , My balance is terrible Dainere , I cant walk a straight line and when we go bush walking i am, quite severley held back from our friends because of my lack of balance . You tell them that stuart says its the case as well and that it will always be a bit of a problem with our balance.Sometimes I think they need to be shown what its like after these types of surgery . that do affect the brain etc.

May I suggest to Mum and Dad that you ask for a Family Case Conference , these are your right and would involve mum and dad talking to the allotted team members of your care , social worker , doctors, nurses , ot's physios etc, they all belong to the Wholistic approach team . I reAlly would suggest this , , Mum and Dad deserve to included in this , and you need answers.

I was thinkling of ring to speak with mum but dont wabnt to put her under pressure.

You and me should get together one day and write our escapades lol haha.

Just try and rememnber that as you go through this storm , many people are willing you to come through the other end ok , , you know that picture you have of the rainbow at New Zealand , well before we went through the tunnel to get to the other side where the water is , it was raining cats and dogs , Meryl and I where so disapointed , but when we got to the other side , there was the rainbow and it was lovely .Your life is so precious and you have lots to do . YOU WILL get past this hurdle , Lots of love and hugs . Stuart and meryl xxx

Michelle Arms said...

Oh Dainere, I'm so very sorry to hear that you are experiencing all this. I was away last week and have only just caught up on what's been happening. You are an amazingly strong girl and I have confidence that God is with you and will get through you this. We love you and are praying that things will be turned around very very soon. xoxo

Anonymous said...

Dear Dainere

We guess you already know that we have been keeping in touch on a daily basis and more to see what is happening to you. We know you have had trouble keeping up with your blog.

We are so pleased to know that things are getting sorted out for you. Not happy about your foot. Do hope the MRI shows the least severe diagnosis.

It is great to know you have a new and caring pediatrician in Sydney and that when you return to Canberra you will be placed back in the hands of your wonderful pediatrician there.

All of the prayers and support you have been receiving must have helped, and of course all that Mum and Dad have been through to get this result, they deserve a gold medal.

Stay Strong and you will be home pretty soon.

Lots of love
Nan and Popxxxooo

Anonymous said...

Daniere, I've found your rainbow. A dear friend of my cousin in WA was driving home through a storm when a rainbow appeared. The rainbow is sitting in front of the storm clouds. I'm sure you will love it.

Hang in there! X Christine

Anonymous said...

Hi Dainerer , OH just reading the blog from nan and pop , it looks like something may at last be working in your favour, not sure what the foot MRI will show , but hopefully not to much damage.

I was so upset last night , I must admit it did make me cry ,It is so traumatic , just the main issue is enough isnt it .
Anyway on to brighter things like Rainbows

Well doing a bit of research in to rainbows for you , I came across this great web site :
www.webecoist.com/2009/12/22/spectacular-spectrums-10-amazing-rainbows/ , it has the most amazing rainbow pictures , for example , did you know that it is possible to have a completely round rainbow.

Keep well my dear young friend

lots of love stuart and meryl xxxx

Anonymous said...

Dear Dainere,

Pleased to read Nan and Pop's comment. It sounds a lot more hopeful.

You certainly have had a lot happening. May it not be too long til you are home again.

Thoughts and prayers,