Wednesday, June 9, 2010


9th June 2010

What is it like to have a night where you sleep the whole night through? I would not know anymore, every night I wake in pain and last night was no exception. After all the examinations yesterday my right knee throbbed constantly with the most excruciating pain I have ever felt and it was so huge, then I could not even bend or straighten it properly. It was not just my knee that drove me to tears, the pain ran up from my ankle and into my bony little hip, the pain was so intense that it made that whole side feel numb and heavy. To cap it all off, I had a headache that made me feel quite dizzy, this can occur after a lumbar puncture but I have never had it happen before.

The skies were overcast and the clouds floated quickly as the wind carried them through the sky, fortunately they cleared and it was a glorious winters day with only a hint of chill in the wind. People were even sun baking on the Coogee Beach around mid morning.

I had to do a stool sample this morning which is not the easiest thing to manage. Mum had gloves and a container to work with and coped amazingly well, nursing may be a career in the future for her with all this experience she is gaining! Jarrett however just thought it was all too gross. We made our way up to SEALS to have my blood tests. It was crowded and surprisingly most of those waiting for blood to be taken were children. Finally after a long, boring wait I was called in. They had to get ice to put one of the tubes in because it had to be kept cold. There were six vials to be filled with my blood. These tests had to be taken from my vein which I actually don't mind at all. The blood nurse told me I was a great patient and she loved my beautiful smile. Some of the tests will take a couple of days for results to come through.

I still have no results for my lumbar puncture or MRI so I am hoping that no news means good news. Keeping positive has been the most important thing throughout this journey if I was not then every little challenge would have seemed like a huge mountain that I would never be able to climb.

We then met with Janine from the Sydney Children's Hospital Foundation, we talked about my book which she was amazed by. She is keen to promote it on the Foundations Website and hopes that by doing that then it would increase sales. She is going to send some information to my teacher about the Brain Tumour Fund to help with the Walk-a-Thon that is going to take place next Term in Week 5 and then she asked us to make a comment about The Sydney Children's Hospital to be placed in an article in the Canberra Times that is being done. The Sydney Children's Hospital at Randwick as part of Gold Week are having a telethon on Channel Nine on Friday and they have asked me if I can be at the hospital that morning so that a cross could be done and they could talk about my book.

After our time with Janine it was then time to go and have a weight and measure done for Endocrine. My height was checked five times because since my last measure I have shrunk, perhaps it is due to the curvature of my spine or a side effect from the radiotherapy but the height difference was 1.2cm. My weight was also checked and as it has been noted by other doctors it has gone down slightly again. In fact it is lower than what it was on completion of my chemotherapy, obviously they are concerned about this. They will check me further in September when we are due back.

We ran into a Mum, Maria who we met in Ronald McDonald House last year. Her little boy Alex has had transplants and even though he is now disease free,he has had some complications from the transplants in the form of viral infections. They have now been in Sydney for ten months, that is a month longer than we were in Sydney. She bought one of my books and thought that it was fantastic and was going to spread the word.

We walked back down the hill to Coogee, Jarrett went for a run while I had lovely warm shower as my pain was still unbearable and making me ill. I am having a rest so that I will be ready to have dinner with Gavin.

We had some terrible news about a member of the family, a Cousins husband who lives in Queensland, he was driving a truck for work, he had a seizure and crashed. He was taken to hospital for tests, there are no serious injuries from the accident however it has been discovered that he has three inoperable tumours on his brain, cancer in his lungs and liver, he can not be treated and has only been given months to live, he is only 52, it is so sad and I would like to ask everyone to pray for him and his family.

See how fragile and precious life is and how we really do need to make the most of every single day and realise that life is far more important than money, work, things like exams or being popular. Life is a marvellous gift and we really need to treasure it.

Dinner with the magnificent Gavin was so much fun, he is such a wonderful person, he always lifts my spirits and makes me feel special, it was disappointing that Gill was unable to make it due to work. I was able to see his new car 'Hercules' which I named for him, it is a smart car, they are really not much bigger than my wheelchair, so it had to have a name to make it seem a bit tougher and larger, he told me not to laugh at it but I have to admit I did have a chuckle. I am so looking forward now to lunch tomorrow with the Focus Creative Team, Paul and Tess these people are the most genuine, caring and determined peopl. I feel extraorindarly blessed to have met them on my journey, I would compare them to the pot of gold at the end of a rainbow, true treasures.

We also saw Janine when we were having dinner and she let me know that Channel Nine are unable to cross live to the hospital during the morning, so even though it would have been wonderful to be able to share my story, it is not possible.

With some disappointing news though came some splendiferous news and that was from Tess, Womans Day contacted her after Amanda had given her a contact there and they would love to do an article on my story in their magazine. This is huge, incredible and exciting, Womans Day is sold all around Australia, this means that through this story more interest will be generated around Australia, hopefully meaning being able to reach out and touch more people then in turn more funds raised for Brain Tumour Research. This is like a rosebud that starts tightly closed and then with sunlight and water gradually opens into a beautiful rose.


Anonymous said...

Hi Dainere

The news about your cousin's husband is very sad. We will pray for him and his family.

Hope that the pains you experienced last night have subsided and that you get a better rest tonight. Take care.

Love Stephanie (and family) xxx

briana said...
This comment has been removed by the author.
Anonymous said...

Hi Dainere,

I'm so sorry to hear that you are suffering so much pain. That hot shower sounds wonderful for providing some relief.

Janine sounds like a lovely person. It also sounds as if she will be helping to promote your book and its message in lots of different ways. So many people have already been inspired by your work - and there will be so many more.

I had to laugh about your efforts with the stool sample. You do realise that it is the role of big brothers to tease their little sisters!! It sounds as if Jarrett is fulfilling that role perfectly!

I found this quote today which I think you will like. It is from Helen Keller, who lived an inspiring life despite the difficulties that she faced because of congenital blindness.

"If there were only joy in the world, we could never learn to be brave and patient."

Hope that you manage to sleep a little better tonight,

Love and warm hugs,

Anna xoxox

Anonymous said...

Hi Dainere,

Missing you heaps. Tinkerbelle has been very good but cheeky sometimes as she keeps running around the house and jumping onto the table and the bench. She is so full of energy.

Your quotes are always so true and inspiring, they really are special.

Never stop believing in yourself, hold onto hopes and dreams and wish upon an evening star.
Be the amazing person that you are and keep your head held up high, stay strong and keep going.

Hope you have a fantastic day tomorrow.

<3 Nalani

Anonymous said...

Hi Dainere,
Saw your story in the Canberra weekly today and another front cover with your smiling face on it. We will have to start calling you 'covergirl'. You are lucky you aren't in Canberra today it was freezing. Stay strong and see you soon.
Love Aunty Kate and Uncle James

Anonymous said...

Hi Dainere - Loved the Canberra Weekly article. Sorry to hear your sleep is interrupted. Hope for a better night for you tonight. Regards

Anonymous said...

Dearest Dainere,

Your blog is wonderful - please keep the stories and insight coming! It always puts a big smile on my face.

I'm so glad you had a wonderful time with Gavin at dinner the other night. The date had been in our diaries for weeks (ever since the second Gav found out you'd all be in Sydney) ... so I am really, really sorry that I couldn't make it.

Did Gav tell you about my work? He probably didn't want to bore you!! But on Wednesday night, the last 2 years of hard work finally came to fruition for me when the NSW Parliament passed a Bill to amend the National Parks and Wildlife Act (the legislation that mak sure all of our national parks and reserves are properly looked after), to make it really clear that sustainable visitation and tourism to parks is ok. It's been a long battle, because lots of people think parks should be locked up for conservation alone. But, I think that the more people who get out and in to our parks, the better people are going to be able to understand why they're so special - and the better chance we have to look after them forever more.

Anyway, that might all sound really boring (sorry!) ... but that's the reason I (very sadly) couldn't make it to dinner. I was at Parliament House (the Sydney version!) with our Minister and his staff until afetr midnight.

So, I'm very tired and soooooooo excited about being able to relax on our holiday - and, of course, also looking forward to our wedding!!

We'll keep you posted! In fact, a friend is trying to work things out so that we can webcast the wedding ceremony from the beach in Borneo!! So, you may be able to watch us get married! We'll let you know how plans go ....

Until then, take care and keep smiling.

Lots of Love,
Gill X

Anonymous said...

Dainere, I've been watching the Gold Week Telethon on channel nine and was waiting for you to come on, but I must have missed it :( They have done a fab job and im about to donate. Keep smiling Champ!! Rhi xx