Wednesday, November 3, 2010


2nd and 3rd November 2010

'The wind blows in a certain direction which I can't change but I can adjust my own sails to reach the destination that I am hoping for'

I remain in Sydney with a nasal gastric tube still sticking out of my nose, making my throat sore and in general really bothersome.  I have had another ECG which was absolutely perfect, so no heart problems, I am eating 'king size' meals and finishing them all, there is no way that I want to be told I have an eating disorder and I just want to return home so I am doing everything that is asked of me and more. 

Chemotherapy has reduced my kidney function so it is not functioning at the full one hundred percent, it has to be kept an eye on as it is at eighty per cent but that is not serious.  My bloods have been good including my blood sugar levels, however my phosphate has been going up and down like a yoyo and they are yet to come up with an explanation for that.

My bone density results have come back however as Mum is not with me all the time, I did not understand what the doctor said about them, all I really understood was that she was having them verified by another doctor at Westmead.  The high doses of radiotherapy that I had can affect your bones as well as the chemotherapy, I am on caltrate which is a calcium supplement so hopefully that will assist it. 

I had occupational therapy yesterday and we made cup cakes which I was allowed to have one to eat for morning tea, they were chocolate ones and were extremely light and delicious.  As you know I love cooking at home and do lots of it so this was easy for me, I am not sure if they were testing me to see if I really could cook, I feel so much like that I am been watched or examined under a microscope. 

School is nothing like at home, I much prefer my class and curriculum, I just wish I was there right now, today would be my electives, French and Textiles yet I am stuck here.  In textiles I am missing out on doing knitting and that is something that Mum has already taught me and I think I am quite expert at, now I won't get to show my Textiles teacher how good I am. 

I have still not had an MRI on my foot and Mum has questioned it over and over again and we keep getting told it will get done eventually they are busy and have to fit me in, in the meantime I have to suffer in pain and not know what has happened to it.  There were other tests that they were talking about also that have not as yet occurred.

My nights are still so lonely, I miss Cosima licking my head in the middle of the nigh and purring loudly in my ear and hearing the familiar sounds of my family as they sleep.  When I wake with pain or a nightmare, I can't call to Mum and have her comfort me, I have to stare in silence and pretend she is there.

On the Ward they had a person come and do stretch and relax classes, I was allowed to do them to try to help my muscles as they have been wasting from sitting around and I am not allowed to do my physiotherapy exercises that Rhiannon gave me at all until they know what is happening with my foot.  This is so frustrating, I was just building up my muscles and they are now wasting again, I don't see how this could be helping me progress in any way.  I wish I had my rollator here, I was doing exceptionally well with it, although I would not be able to use it because of my foot, wow what a vicious circle.

In the afternoon I got to see Mum, I count the hours each day until I see her, we always hug each other so tightly, say how much we have missed being together and how much we love each other.  Some people think that girls my age and their mother should not get along, that we should be arguing because I am becoming an individual and resent my parent, but I love Mum so much and I know that she loves me too.  Nalani and Jarrett get along with Mum really well also, we are just that sort of family, why argue with each other life is too precious to do that.

Last night when Nalani and Jarrett called, Nalani told me that she had been nominated for Student Leader for next year, I was so proud and excited for her, I think she really deserves to be selected, she is a generous, caring, responsible person who would put her heart into the position.

I had another huge breakfast this morning and then they are having me do art therapy, which is good, I guess because I like art but sometimes I feel that I am wasting my time here, I could be doing art back home. 

When you are stuck in hospital, you miss seeing the splendiferous blue sky with the wispy, cotton wool clouds floating gently, forming magical shapes, I miss the sun shinning down to warm my face and fill me with hope and the fresh air that enters my lungs and helps me breath.  Each day I am here, is  a wasted day that I could be making the most of.  I am hoping that I will be able to adjust my sails and sail home in the wind very soon.


Anonymous said...

Dear Dainere,
It was really lovely hearing from you yesterday. We miss the regular contact we have with you and will be glad when you get home and we can chat like always.

You are one very special girl, and we are the proudest grand parents ever.

We do hope you get that MRI done soon. As we told you, Nan has a sore foot too and knows what it is like to be in so much pain. However, Nan is lucky, because it is being attended to very quickly with treatment and medication.

Maybe you will have to move up here.

Oh! for one of those lovely chocolate cakes you made. We know just what your cooking is like because of the delicious dessert you made for us when we visited last.

Pop keeps trying to get me to cook things like you do, but without success I'm afraid. Maybe when we see you next, you can give me some lessons.

It is really understandable that you are missing Mum and we do understand the close relationship you have with her. You know, Mum and Nan were very close when she was your age and we still are. Pop and I are also very close to your family and your uncle and aunt.

We count ourselves as being very lucky to have this relationship, so don't let anyone tell you it is wrong, having the relationship with your family that you do. Jealousy can be a curse sometimes.

Also, we are sorry to hear that you have been advised not to continue your blog. We know you, and know how dear to your heart this has been, helping others, and also helping you through your journey.

We know there will be a lot of disappointed followers around the world. Hopefully you will be able to continue at a later date.

We will all have to put our thinking caps on to perhaps find another way of getting your message heard.

Keep smiling and inspiring as best you can.

Lots of love
Nan and Pop xxxxxxxxoooooooo

Anonymous said...

Hi Dainere, yep its me again , the product , really is for oxygen cannulae , but could be used for Ng tubes is comfeez.
Excellent about the ecg and the king size meals fantastic .

You will have your chance I hope to show your teacher how good you are at knitting , could you not ask mum to get you some needles and wool and knit something from a pattern ,and show teacher once you get home. just a thought.
Im sure they will let you know the outcome of the bone density scans and hopefully mum will be informed.

Hope your able to watch Junior master chef, Isabbella and Seiena are my favourites.

That is exactly right and as it should be Dainere , your mum , will always be your mum , and its fantastic that you are so close. Meryl is very close to her mum. still gives her hugs , and we see her as often as we can , and she speaks with her on the phone a lot . Families are what life is all about . You stay as you are .

Congrats to Nalani for being chosen student leader for the year .

I dont nthink you are wasting your time , may be it just seems like that , keep strong my friend , Im sure you will be back home in your own home and surroundings soon.

One thing that worries me a bit Dainere is what Nan and Pop say , about you having to stop the blog , that makes me sad , not only for me , but also for you . as I know how much it means to you .

Our thoughts and prayers are as always with you .

love and hugs

stuart and meryl xx

Anonymous said...

Dear Dainere,

Firstly, why are you not continuing your blog? I've been reading your beautiful book and your blog and they have been giving me so much inspiration. I've told all my friends about your journey thus far and how you have such courage and such an amazing outlook on life. You have touched all our hearts and we wish you the absolute best.

This is my first year at uni and I've only ever wanted to finish my degree, giving me a platform on which to help people. At such a young age you have already accomplished this. Just remember that what you have gone through has set you a part from the rest and that you are destined to achieve many more wonderful things.

You are an idol

Love Sarah xox

Anonymous said...

Dear Dainere,

Good news about the results from your ECG. Hopefully you won't have wait too much longer for that MRI. It is unbelievable that you have had to wait SOOO long.

The chocolate cupcakes sounded absolutely delicious. As Nan says, you must be a good chef. Maybe your next book could be a cook book!! :-)

I worry about a health system that does not allow a parent to stay with their child! It really is beneficial to everyone- patient, parent and staff- and surely aids a speedier recovery. I am glad your family is such a warm, close, loving one. It certainly helps when we have to go through the storms in life to have people we know will always love us and support us. And we can certainly become individuals without resenting our parents!!! Life is DEFINITELY too short to argue!

Splendiferous news about Nalani's nomination as School Leader. Will there be an election? Does Nalani have to give a speech? All very exciting.

"One of the greatest comforts and strengths you will find is in the sharing with others, particularly as you discover that you are in a position to help others. And as you do so, you will help yourself. It's a magic that never fails".

Dainere, you are helping and encouraging, educating and inspiring others. Thank you so much!

Hoping for a safe and restful night and a better day tomorrow.

With thoughts and prayers,