Saturday, October 23, 2010

ARRIVING IN SYDNEY AND NOT WHAT I EXPECTED

22nd and 23rd October 2010

I was so nervous as I waited to go to the airport for my unexpected flight to Sydney, the butterflies were fluttering at a hundred kilometres an hour and did not want to stop, I also had this terrible feeling like the ones I had during chemotherapy when things did not quite go as expected.

In the morning when Jarrett and Nalani went to school, they were both crying and so was I as I gave them a huge loving hug.  Jarrett asked if he could come to the airport with us to say goodbye but we told him that school was more important. 

After checking in at the Qantas desk we were told that the plane we would be flying on was on the Tarmac and we would require a special lift to get me onto the plane.  We waited patiently for the special assistance person who was helping us to come.  We got to walk where all the action was taking place with the busy Qantas Staff getting everything ready for various flights.  I looked ahead and saw a spectacular bright pink Dash 8 aircraft sitting on the Tarmac, it was a special breast cancer one, it was our plane.  The special lift came and I got to go in a little wheelchair and went up in the caged lift, it was quite an adventure.  On the plane our seats were right near the propeller so I could see it slowly start to gain speed and take off.  I thought having a pink aircraft was a good omen.

On the plane I remained quiet and in deep thought, I know that I am a strong person and very determined but do I have to face this many obstacles and being dragged away from my home and family makes me feel angry and upset.  When I mentioned to the Airline Attendant that I was going to hospital in Sydney, he went and got me a whole pile of raspberry cream biscuits and said they would be better than hospital food!  That was so generous and thoughtful of him.

We arrived in a hot and streamy Sydney and I still had those butterflies fluttering around in my little stomach and then we went to admissions we were told that there was no bed available until 4pm and we had been told by our doctor we had to be there by lunchtime.  So we left our bags at admissions and went for lunch, I enjoyed some strawberry and cream pancakes with Mum and I had a Coke Spider, they put heaps and I mean heaps of icecream in a large glass and gave me the can of Coke, I poured a little in and immediately it bubbled and rose to the top of the glass.

Mum and I decided that because we had a couple of hours still to waste we would take a walk down to Coogee Beach, we were half way there when we received a call from the Hospital to say the bed was now ready.  So Mum had to walk back up the hill as quickly as she could and the hill down to Coogee is rather steep.

I was admitted and given a bed, I was expecting to see a Paediatric Cardiologist which is what we were told but suddenly I was surrounded by all these other specialists, I had blood taken, blood pressure done and weighed and measured, I had still retained the weight that I had put on when I was measured in Canberra on Monday so I was happy with that. 

Mum asked when the heart monitoring would begin and we were told that we would be seeing a Nutritional Team instead.  Mum was not impressed, all of this could have been done in Canberra under my wonderful paediatrician and if he had of thought it necessary he would have sent me to Sydney,  we had gone to Sydney and really had not needed to, I think they just like to control everything and don't think our doctors in Canberra are capable. 

Anyway while Mum was taken away to talk to a doctor, I was whisked away and a nasal gastric (NG) tube was inserted into my nose and down my throat, I had one after my surgery and it is the most uncomfortable feeling and it is difficult to swallow with it in. 

My weight has been slow to pick up since my ordeal and during Chemotherapy it plummeted and the doctor saw no real urgency about it.  I had just been eating  really well, putting on weight and feeling much better within myself so I could not believe they were doing this to me, I asked for Mum but they told me she could not be with me, I was so terrified I lost my voice, almost like mutism and could not speak but I wanted to tell them no! not without Mum, Mum help me!  I cried and when Mum returned from talking to the doctor she was taken by surprise, she had not given permission for this to be done to me. 

An EGC was done of my heart and everything was fine, bloods were done my potassium and phosphate were a little low so I was put on a supplement as well as some calctrate for my bones, this again could have easily been done in Canberra.  Through the NG tube I would be given Ensure at night it puts weight on rapidly but the only problem is that if it is done too suddenly then other problems can occur. 

I had a dreadful night sleep, I felt uncomfotable, frightened and just wanted to go home, Mum slept in a chair beside the bed and said it was terrible but at least she was there beside me as usual.

This morning things went from bad to worse, they gave me less food to eat than what I do at home, I can't understand what is going on and they are trying to say I am like an annorexic person, but I am not, I eat, in fact I have been eating well, I certainly don't make myself sick after eating or go out and do crazy exercising either. Mum is not allowed to stay with me and they are sending her to a Lodge it is like they are blaming her but my Mum always looks after me.

Worse still is that because of where I am, Mum can only visit at certain times from tomorrow, from 9.30am to 8.30pm tomorrow but on Monday I will only be able to see her from 4.30pm to 8.30pm, I am so frightened, I don't want to be alone, I am scared that they will do something to me again without Mum's permission, this does not seem right.  I know that my weight is a little low but Jarrett is on the bottom three percentile and he does not have to have this done, my Nana, Uncle and other members of our family are only small, they have fast metabolisms that burn fat quickly, I am probably like that it would most likely be hereditary like low blood pressure. 

My heart rate is perfect., my blood pressure and all my blood tests are good, I am in no danger of having a cardiac arrest now and probably never was and my seizures are exactly what my paediatrician said they were from the Brain Surgery, so I should now be able to be released home. My friend Emily was going to come visit me today to cheer me up and so was Tess but we were told to ring them and cancel it as they did not want me to have visitors.  I am not sick, I can not understand this, I have been crying lots and then they are trying to say it is about my weight but it is nothing like that it is because I want to be home, they won't listen to me, it is awful.

At least I have Theodore with me, he has been through everything and I know that through having him there again I will find the strength to get through this and get back home to Canberra as quickly as I can with my paediatricians help.  Thank you for all your truly wonderful and supportive comments as well as touching stories to help me through.

25 comments:

Anonymous said...

Dear Dainere
We are horrified to hear that you have been put in a ward that treats people who purposely starve themselves. We wish we could do something about it but it seems nobody has any say. However we are sure all those who love you and those medical people who have been taking care of you in Canberra will be able to sort something out.

It is natural that you feel frightened as you have never had to be alone since your cancer, but believe us, when your Mum was little and had to go into hospital, parents weren't allowed to stay overnight, and she was a lot younger than you.

We are sure you will be OK and will be able to draw on all that inner strength you have shown for so long. Remember, all those people out there who are following your blog will be with you all the way.

Miracles do happen, and we hope one happens for you really soon.

EAT UP BIG AND SHOW THEM.
We love you heaps.

Remember no mountain is too high if you have the courage and we are sure you have that.

Nan and Pop xxxxxxoooooooooooooo

luke said...

Hi Dainere,

How horrible! I wish I could do something to help, but of course I can't. I only hope you're out of that ward and back home as soon as humanly possible! On the upside, at least they can't find anything for you to be worried about :)

Love,

Luke

Kristin said...

Dainere -

My friend, Luke, showed me this link.

I'm so sorry you have to deal with this. It's disgusting treatment and I'm appalled at the way the hospital is handling it.

I wish I could do more than send my best wishes and positive vibes!

You are such a strong person - I hope this is over soon and you're back home fast.

Anonymous said...

Dear Dainere
I'm sure everything will get sorted out soon. Just remember that there are a lot of people supporting you from a distance so think of us and smile through this latest challenge.
I hope I can come and see you soon. I am sending you special wishes across our rainbow.
Stay strong and eat lots.That's the best defence!
Lots of love and big hugs always
Tess xoxoxoxoxoxo

Carol said...

Hello darling girl.

Well, that all sounds really awful. I can only guess these doctors don't quite understand that you are not your average 12 year old girl, a girl who understands far more than they are giving her credit for.

Can I suggest you ask them questions. Tell them there are things you want to know and would like explained to you.

I feel so sorry for those girls who are being treated for anorexia, it must be awful so feel so bad about yourself, as they do.

Anyway, chin up, soldier on - as you always do - and I will come to Sydney or Canberra to see you soon.

Alexander was 9 on Thursday and we are having a party for him tomorrow (Sunday). He loves pens and things like that so I bought him a beautiful red pen on which I had engraved his name, and the birthday - 21.10.2010. He also received a beautiful big box of Derwent coloured pencils - like an artist's box - I must admit I think they are lovely, too.

Say hi to your mum and your family ... know that we all love you very much - even those of us who've only known you for a little while ... and I will see you soon.

Carol xxxxxxxxx

Anonymous said...

Hi Dainere, my dear friend, I am so sorry to hear that are having all this trouble ,. It may be a good idea for mum to try and find out what is going on , this all seems terrible for you I am sure . I will see if I can come in some time and see you if you are going to be in for some time , I will ask them if you can have visitors if you are going to be in still on Friday afternoon. Thats is of course if it is ok with you and mum

You stay as strong as you can , and with all of us you will come through ok , I think this has been a big shock for you and now from what you say , it all seems a bit rushed . best not to jump to to many conclusions. .

I was the same as you , when I was in Royal Prince Alfred , the meals where not big enough for me , so I asked for bigger meals and i got them , Believe it or not I came out heavier than I went in !!

We continue to have you and your family on our thoughts , hope fully at least someone who you at least write to can come and talk to you for a while .

Lots of love and hugs , stuart and meryl xxx

Anonymous said...

Hi Dainere, its stuart again , just a suggestion , if all this is still going on on MOnday , may be mum could ring your paediatrician in canberra and ask him to ring the hospital and find out whats going on , and ask why they are treating you like this . love and kisses
stuart xx

Rhiannon said...

Dainere, I'm sorry to hear about the pain and suffering you and your mum have been put through during your hospital visit. You are my strongest patient and I know you can come out the other side of this! Sending love and prays, Rhi xx

briana said...

Hi Dainere

We are so sorry to hear about what is going on in Sydney. It must be horrible for you and your mum to be seperated like that.

We are all thinking of you and praying you will be home real soon. We know you are so strong and will keep climbing that mountain.

Sending you, your mum and your family rainbows from our hearts. Stay brave and remember we are all behind you.

Lots of love and best wishes
Taylah, Briana and Cathy Xx.

Anonymous said...

Dear Dainere,

All this seems incomprehensible, but it is good that your results were much better than first anticipated.

It's not right that your Mum isn't with you! Hopefully, this will be sorted out REALLY soon.

AS Nan and Pop say there are many people out here who "are with you all the way", wishing and hoping that your steps over this latest mountain are quick, fast ones and that you'll soon be back home.

With loving thoughts and prayers,

Mariannemr

Anonymous said...

Hey Dainere - Hang in there, sometimes we are given/thrown things in our lives that do not make sense at the time. But then further down the track it all seems to make sense. Just take one step at a time, one day at a time, even though you feel frustrated and angry about it all, be brave girl and everything will fall into place. Thinking of you. Luv Sandra xoxoxo

Gavin said...

Hey Princess,
Hope that you are resting and comfortable. I got the text from your mum about no visitors for now, so I will hold off from visiting - your email about getting me to come and bust you out was truer then either of us expected huh?

I think that each and every doctor who is treating you like this needs to read you book and your blog. The mechanics of the whole process seem to very quickly block out the fact that they are dealing with real people who get scared and want answers.

I am sending you positive thoughts over our rainbow. Know I am thinking of you as you read this.

All my love
Gav

Anonymous said...

Hi Dainere,

Sorry I haven't written for a while I've been really busy with assignments and tests going on. I hope you feel okay being away from you mum she will come back,I saw this underneath my shelf (boarders put stuff under there)and it said "Live free, die proud, have fun, laugh loud" I really helped me through the homesickness and depression I had so maybe it can help you.

That plane sounds really cool being from distant parts of Australia I've only been in a plane once. But it was pretty cool. My friend (Mele) said this to me " I love my food say it with in the tune with "We will We will Rock You"! :)".

I think you could watch "My Sisters Keeper" I watched it today and its about a girl who has Leukemia (Kate) and her mother was forcing her other girl (Anna) to make donations which she did not agree to. Its a beautiful story about the strenght and the heart of this girl.

I'm sure you'll match the courage of the girl in the movie.

Best of wishes and lots of love

Lucy

Cate Bolt said...

Hi Dainere,
Well I never! Don't they know who they are dealing with?!
Be strong and keep thinking all the positive thoughts you can think. You know you have been through worse and although Mum might not be with you all the time, the whole family and all your friends are thinking of you every hour of every day.
Please tell Mum to call me if there is anything I can do or you need anything at all and we will make sure it happens.
Big love to you and all the family,
Cate & Asho & the rest of us.

Anonymous said...

Dear Dainere,
I go away for a few days to camp and when I come back your world has fallen apart. I am so sorry to hear about your ordeal. They don't seem to know you as well as they should. You have been doing so well lately. Especially with the warmer weather to help.

We will pray for you tomorrow that you get moved to a more appropriate room and better yet that they let you come home.

We are thinking of you and praying for your return to us. Be strong and hang in there. Say hello to your mother for us, she probably needs a hug and some care as much as you do. She must be beside herself.

God Bless
Mrs Chatty.

Shamozal said...

Hello Dainere,

We are watching your story all the way from Doha, Qatar. Tell you Mum I think she is almost as brave as you are. What a remarkable little girl you are. We will be thinking of you over here and sending all positive vibes your way.

Kirsty

Anonymous said...

hi dainere that is terrible stuff happening but i know you can battle through it because your a soldier

i have also been putting your pen to good use i use it every time i write a song

lots of love ASHO

Tracy said...

Hi Dainere,

Me again. Wow! They're really testing you with this one, aren't they? I'm sure you can tell we're all thinking of you, and hoping that you start getting some answers, and some visitors, very soon. Stay strong, lovely girl, and this will soon be all sorted out.

Lots of love,
Tracy

Yvette Vignando said...

Hi Dainere,

You are so strong but it must be so frustrating to be saying things to the medical staff and feeling like they are not listening.

Adults also feel like that often in hospitals - sometimes it's because the doctors don't explain things well or don;t take enough time to explain, and sometimes it's because the doctors (even though they are experts at medical stuff) are not very good at understanding how other people might feel. They should teach that stuff at medical school too don't you think?!

I hope you get the chance to tell a doctor how you are feeling about the treatment. I also hope you get a chance to ask all the questions that you have. Perhaps your mum coud show the doctors what you have written here on your blog? You have explained it very well here so it would be a good way for them to get better at understanding why you are upset and crying.

My kids (who are 15,12 and 8) get pretty upset too when they don't like something and don't understand why it's happening. I guess it's a little bit like when teachers or parents make decisions that kids don't like and then don't take enough time to explain. I know I have made that mistake (of not explaining) as a mum before.

It's been a rainy weekend in Sydney so I am glad you at least got a quick trip to Coogee before this wet weather set in. We had a birthday party here last night for one of our boys and even though it was raining, all the kids went into the unheated pool at about 8 o'clock at night - that's a good example of how kids are sometimes better at having fun than adults I guess!

I'm sending you lots of blog hugs and I hope you can go home with your mum to Canberra as soon as possible

Love Yvette xx

Anonymous said...

Hi Daniere,

Found you! Back in hospital once again. What a bummer! Keep protesting and fighting. What they are doing to you and your mum is not right, no matter how well intentioned they believe they are.

Sending the biggest hug, a beautiful rainbow and a quote Val Taylor (shark and underwater expert) treasured.

This one is from an South African freedom fighter name unknown. I framed it and had it on my wall while fighting cancer.

You've never lived till you've almost died. For those who fight for it, life has a flavour the protected will never know.


x Christine

Anonymous said...

Dainere,

How awful that they are making your mum stay away and putting in a NGT without her consent is very naughty. You are a strong little girl and as I can see from all your posts lots of people are praying for you and sending you their thoughts, I know this is not the same but I hope you can get a little extra strength.

Of course you are not aneroxic, you are just someone who was little anyway and then your body got a beating and you have ended up even smaller.

I hope things are going a bit better now, it sounds like they got an idea and then suddenly acted on it without thinking about the consequences on you and your mum and rest of the family's lives.

I agree with the man who said "can your paediatrician call them."

I am thinking of you and with all the others who you have touched, I am praying for you and sending you rainbows

xxxxxxMonica

Anonymous said...

Hi Dainere - Susan from BTAA. Things are going well here in Canberra for the brain tumour event at Parliament House. The Senators and MPs got their mailout today - including the ribbons you helped us make up. Thanks so much. I am very sorry to hear you are having such scary and invasive treatment. I wonder if your Mum is staying at Randwick Lodge? That is where we stayed when Matt was in hospital for his surgery. If so it is very close but on a very noisy intersection. Tell her not to worry about you and to get a good sleep as she will soon be back looking after you at nights. It must be scary for you on that ward but I guess that is the best they can do and remember those other girls are very sick but in a very different way.

Hope to read things are better for you soon.

And that you do get that walk to Coogee soon.

Susan (and all at BTAA)

Anonymous said...

HI Dainere, you precious girl , i hope things are becoming a little easier today , it was lovely to talk to you on saturday and of course also your mum. You tell mum that We know she does not know us as in seeing us , but she has our home number and if she needs anything or just wants a chat , she can ring anytime , because when im at work the number she has will ring on my mobile in the hospital I work in , because it diverts from home to the mobile .

its been quite a cool start to the week hasnt it .

When you go home there will be another little Rainbow surprise for you .

You show them how great you are and together with all of us we will win.

Take care my friend , lots of love stuart and meryl xxx

Anonymous said...

Hello Dainere, My daughter Eloise who is 9 had a brain tumour removed in May this year. She is not a big fan of going to hospital and hates the food too. She has had radiotherapy also like you (Coogee team rocks) and is now on chemotherapy.
We got a copy of your book and she has just started looking at it. She is very scared and your book has helped her and us as parents to understand the road you have been travelling. We thank you for that. Eloise likes your Teddy Theodore and she also has a Teddy called Whitey (he is her rock)
You are an inspiration to many, keep your spirits up and your courage strong. We are thinking of you and soon you will be home again.
All the best to you Dainere.....
Alicia Littlefield (Eloises'Mum)
Hope we get to meet you someday.....take care

Dianne said...

Dear Dainere,

I am so sorry to hear of your sudden ordeal, I do hope Mum has been able to get some answers by now om what is going on.

If Mum talks to Dr Rosier about what has happened since getting to hospital he will seek some answers.

At times half the battle of being sick is dealing with the system; the Doctors could be a little more forthcoming and avoid scarring their patients!

I am hoping your next blog entry is less traumatic telling us you will be coming home very soon. Take care and don't be frightened...Mum is not far from you.

Thinking of you
Lv Dianne xxxxxxx