Monday, June 7, 2010


7th June 2010

I fell asleep last night to the soothing sounds of the waves rolling into Coogee Beach, I needed a decent night sleep before my big day today unfortunately my body had other ideas and I once again suffered with severe pain in my knee, hip, ankle and hand, I am learning how to operate though with little sleep and if I can smile through it, it makes me stronger to face whatever comes along in the day. On waking I was pleasantly surprised to see the sun shinning and this made me think that today was going to be a spectacular one.

The amazing Tess came and picked us up for our interview with Amanda Kellar and Jonesy. The morning traffic in Sydney can only be described as chaotic, we don't know how lucky we are in Canberra. When we arrived, Laura met us and took us to the recording studio where the interview would be taking place, we also met Ben who chatted to us. Jonesy and Amanda walked in, they were so friendly and hilarious, Jonesy had being to the hairdressers the day before and had a $120 haircut, it looked pretty cool but I don't think I would pay that much for it. The interview was a pre-recorded one so they can edited parts in and out of it. I was asked some questions which were quite different to what many other interviewers had asked, they talked also throughout it with their opinions and ideas, it was lots of fun, they are terrific people. I then gave them both a signed book, Jonesy wanted his to say 'You're the best' and in Amanda's I wrote 'You're Splendiferous'. We then had some photographs taken together and I will post them on this Blog once I return home to Canberra. The interview will be on WS FM later in the week, as soon as I know I will let you all know. The trip back to hospital was much quicker than on the way there as the traffic was much lighter. Tess gave me a lovely bag of surprises today and that as a beautiful crocheted jacket and long socks with pink love hearts from her Mum, Effie, some Lindt Chocolate which is my comfort food, a lovely butterfly cross stitch to keep me busy and a special bag from Matt Preston with his book that he signed especially for me, his CD and you won't believe this one, a cravat! I feel so overwhelmed and grateful to receive such wonderful gifts.

I then had an appointment with my Neurologist on C2 North, I felt quite nervous whilst waiting in the waiting room, I hate feeling this way but I guess it is all part of my journey and I have to breath deeply and find courage. Firstly she asked all about my book and she bought one from me which I signed especially for her. Then it was down to the medical side of the appointment, the check up. She asked if I had any new symptoms and we talked about my pain, knee, headaches, scar pain and how I generally felt. I did my favourite test, the nose to finger one, trying to walk as if on a tightrope, which I epically failed at as I totally off balanced and fell, testing of my nerves and muscles and looking in my mouth and eyes. I was weighed and measured, my weight has dropped again but I have been eating perhaps it is the pain taking its toll on my body. After my examination the Neurologist who is such a kind and caring person, looked at me with a look that made me worry, her forehead creased as she informed me that she had feared that earlier my tumour had caused a condition known as neuropathy and she confirmed that I do have it. This condition, which has different strains has seriously effected my muscles and nerves in both my legs, feet and arms, it is also what is still causing so many difficulties with my balance and walking, her prognosis was that I will be in my wheelchair for a very long period of time and most likely indefinitely for distance. She said she will converse with Occupational Therapy, this could mean that I will need a different wheelchair and looking to the future for my desire to do sport she is encouraging it but it looks like I may be a wheelchair athlete and I can tell you now if that is what occurs I am going to be an inspiring one. One storm, now for another, I also have developed a curvature of the spine which is a rare effect of the radiotherapy and I will need to see the orthopaedic specialist next visit about my knee and my spine. In a small rainbow moment I was told that I have gained some strength but it seems to be more prevalent earlier in the day and it decreases later on. Such is life and now I have some new challenges that I have to face, I will stay strong and I am not going to let them deter me from my goals and dreams. I will be honest I did cry, this news really hurt and upset me and really had me questioning again, why me and why so much? It just does not seem fair some days.

From my doctors visit I decided to continue on my main purpose in life at present and that is getting my story out there in the world, so we visited Ronald McDonald House which had been our beloved home away from home during treatment. I gave Michelle a signed copy of my book and she was so thrilled and said that it was the most incredible wish she had heard of anyone having, they are going to let sponsors and families know all about it and she wants me to send her all my newspaper clippings so they can display them in the house. Doing this warmed my heart after my devastating news and made me realise that this is why I have been given this journey and I have to see it through to making a difference to other people's journey's. I don't want other children to have to face the same side effects I have, something has to be done to change this.

When we came back to our welcoming Hotel room I cried again, I felt so low and disheartened, then as if in a twist of fate, we read emails and I discovered that Natalie had sent me the article and front cover of Canberra Weekly, she is a talented and marvellous journalist and told my story with so much compassion, empathy and understanding and to see myself on the cover in the photograph taken by Cole really blew me away and gave me a small rainbow moment, this could really start the sales sky rocketing this week, that is my dream and I hope that it will come true. I also heard from Denis, he forwarded an email message from a person in Paraguay about my book, my story is reaching distant places in our world this can only be a huge positive. Then Tess forwarded me an email from Carol whose friend Jayne did an article on me in her magazine Sunny Days Magazine and it was just magnificent also, the link is:

In this visit to Sydney so far even though my appointments have not brought me the best of news, what my book is doing is making a huge impact on other people's lives and what more can I ask for. I am now hoping that my MRI later tonight will be okay, I still have that dreadful, sickening feeling that I spoke about yesterday. I will only receive preliminary results whilst I am here and will be informed of the full results in next week after I return home.

While Jarrett went for a run along the Coogee Beach Front and up Dinningham Park Mum and I went for a walk and took in the picturesque views and the fresh sea air. As I looked out to sea I wished that the waves could come and wash all my troubles away and carry them far out to sea. I still feel a sadness within my heart but life is too short to dwell on your troubles no matter how terrible they seem, over the horizon there has to be my rainbow. Having Jarrett here has been great though because he always makes me laugh and gives terrific hugs just like Mum when I am feeling blue.

The rain is pelting down outside as I am typing this, it is as if the people in heaven are all crying tears upon our earth. I certainly have shed my fair share of tears today also, I am hoping that tomorrow there will be glorious rays of sunlight and my smile will match it. We received a telephone call from the MRI people to ask us if we could come in earlier as they had received a cancellation. So instead of having my MRI at 6.20pm I was in there having the canula inserted by 5.30pm. Having the canula inserted is so easy for me, it stings a little but that is nothing compared to the pain I experience every day. I had a good stratch of my head prior to entering the room because it has been itchy this afternoon. The MRI began and I closed my eyes and listened to the various different noises that it makes as it takes the images of my brain and spine. Then towards the end they come in and add the contrast which shows enhancements clearer. They then took more images and came to inform me that they wanted to take a few more, they did not say why and it was not because I had moved so maybe they just wanted to take a closer look at something. So instead of it taking the usual hour it took one hour and twenty minutes. Theodore was there with me lying on my legs and Mum was beside me holding onto my legs and stroking them. We always ask for a disk copy of my MRI so that I can keep it in my treasure box, they tell my story from the beginning.

I am so tired now and tomorrow is an enormous day for me starting at 10am with a physiotherapy review and ending at 3.40pm with an Endocrine appointment in between I have oncology clinic, occupational therapy review and a lumbar puncture.


Anonymous said...

Dearest Dainere

Life just keeps dealing you these terrible blows and you just keep smiling and remaining positive. There is absolutely no doubt that you are my hero.

I'm so glad you and Mum managed a walk along the beach before the rain came in. It's so peaceful and calming looking at the water. It's very cold now too so I hope you get back from the hospital quickly so that you can snuggle in and perhaps have one of those Mummy Specials.

Stay strong gorgeous girl and I will talk to you and see you soon.

Love you lots and lots
Tess xxxoooxxxoooxxxooo

briana said...

Dear Dainere,

i am so sorry about the news what is happing i feel so sorry for you and your family hope you get better so.

hope you are having a beauiful time in Sydeney.

hope to see you on the Canberra Weekly.

thank you for putting me on your blog.

love from your friend briana

ps: taylah said hello

Anonymous said...

Hi Dainere
I couldn't help but check out your blog before I went to bed to see what sort of a day you had. Im sorry to hear that it wasnt what you had expected but you did have a chance to walk by the sea which is always a bonus. You are such an amazing girl, still smiling through it all. I hope you get a better nights sleep and tomorrow is a lot kinder. Thinking of you always.

Luv Sandra xoxox :)

Anonymous said...

Dear Dainere,

You are such a brave and strong girl thats why you inspire me in life.

I have learnt that life itself is much more important than anything else.

Tinkerbelle is missing you heaps, as am I. Tinkerbelle has been running like crazy around the house but she had a bit of time for a cuddle, she was purring loudly!

Just keep strong and keep on fighting.
My thoughts and prayers are with you while you are in Sydney.

Hope you have a good day tomorrow and I'll talk to you soon.


Anonymous said...

hey there beautiful girl. everyone on 'team dainere' are looking forward to seeing you on thursday. i am so sad to hear your day was spoilt by doctors news again. i hope you get some quality nice time at coogee. seeya thursday paul

Anonymous said...

Dear Dainere

You are in our thoughts and prayers and we hope that tomorrow is a better day for you.

You are such an inspiration and we wanted to let you know that we have been following your journey through your blog and your book.

You are very courageous and we are praying that you get some better news tomorrow.

Lots of love from Stephanie & Louisa
(and family) xxx

Anonymous said...

Dear Dainere

Sorry to hear about your news from the doctors.

You so deserve some good news for a change and I hope your appontments today deliver some.

What a lovely place you are staying in and the sound of the ocean is beautiful to listen to.

Hope your day today gives you a glimpse of the rainbow you so deserve to catch.


Jenney, John, Ben , Josh and Sophie

Anonymous said...

Dear Dainere,

I have not commented before but I just wanted to say hello from 7C. We miss having you in the room with your smile and your beautiful mother.

We are sorry to hear about your bad news but hopefully tomorrow will be better. It is so cold here in Canberra that being in Sydney nearer the coast has to be a bonus.

Take care Dainere and see you when you return.

God bless

Mrs Chatty

Anonymous said...

dear dainere,

i am very sorr to here about your story.

my name is jess and u probably don't remember but i went to holy spirit with you in kindy yr1 and yr2. bethany and i are very sad to here you story.

i can't wait to read your book

ps get well soon<3

Dianne said...

Dear Dainere,

I know you feel nervous being back in Sydney, all the memories flow back, good and bad, but don't feel disheartened as you have come so far on your journey.

Sounds like you are just blowing away the minds of all those people you got to know in Sydney by the great achievement of turning your WISH into publishing your book; the good news story will continue grow.

Keep your faith strong. I will be thinking of you during the next few days as you go through the rest of your tests.

Say hello to Mum and Jarrett, I hope they are doing well.

Lv Dianne xxxxx