Sunday, June 6, 2010


5th and 6th June 2010

If you could call a Winter's day perfect then that would describe the day that greeted us on Saturday. Jarrett had running training at Stromlo but I did not go this time as Mum wanted to make sure everything was organised in the house for our return to Sydney for a week on Sunday. Once everything met Mum's high standards Nalani, Mum and I went to the shops to buy a gift for Celina whose Confirmation we were going to that night. The shops were so busy, I started to feel really uncomfortable and the noise really affected my ears, as they began to ring more than usual.

In the afternoon we had a visit from my number one Salesman, Tass and his lovely wife Gloria. They had been to Melbourne to see the stage shows Mama Mia and Fame and they brought me back the most beautiful and delicate lilac butterfly mobile. Then Tass excitedly told me some magnificent news that he had received on Thursday and that was that Mick from Canberra Weekly had called him to tell him that after Natalie had interviewed me, she and the camera man went back to the Office inspired and in awe of my story. Mick, who normally sells the front cover to people for advertising has decided to change his format because of me I can not believe how my story is affecting and chaning so many people's lives and this week I will be featured on the front cover of the magazine. Wow, me, a cover girl and attracting more attention to my story and my dream of helping and inspiring others this is just unbelievable! I am now hoping that every person in Canberra who picks up that magazine will also buy a copy of my book, this would be a true rainbow moment then.

I managed to grab a quick cat nap before we had to go to Church to see our family friend Celina make her Confirmation, a very special occasion. The Mass was lovely and reminded me of making my Confirmation last year when I returned home after radiotherapy for five weeks. After the Mass the family held a dinner at a wonderful new Italian restaurant near Yerrabi Ponds. The food was presented artistically and would have met approval of the MasterChef judges. I was getting extremely tired and after speeches and the cutting of the cake we left to go home to bed. It had been magnificent to be invited to be part of Celina's special day and she really loved the gift that I had chosen for her. I had also got to catch up with another friend Briana who has to have an operation soon and she is really nervous about it, so I was able to give her some tips on how to get through the difficult times. The only thing that was really dreadful on this night was that it was overly noisy and I just could not hear and it was so frustrating, I wished that I had my pink hearing aid and then I would have been able to answer questions people asked me and join in converstions like a normal person.

After a restless nights sleep with pain and probably nerves I woke to what could only be described as the most miserable, foggy morning Canberra has had in weeks. The thick fog made the air so damp and icy, Jarrett went to running training at the AIS while Mum and I packed our bags for Sydney. I received a lovely gift from Jenny who had knitted me a rainbow beanie and scarf, it is different to the one Tess and her Mother made I think rainbow beanies and scarves may be the new fashion statement this season, she also made one for Theodore which he is wearing. She had found a butterfly badge that she had bought years ago for a fund raiser for hearing impaired and she said she thought I would love to have it. The morning flew by so quickly and then it was time to leave and drive to the airport. As I hugged Tinkerbelle goodbye I felt a wave of sadness come over me, which made me choke up in my throat and made my stomach churn. As we drove the tears began to fall freely from my eyes and I found it difficult to stop. I don't know what this visit to Sydney will bring, I always hope that it will be positive but I had this gut feeling, so similar to the one I experienced prior to my line insertion surgery which went drastically wrong and caused me so much pain because the surgeon made an error and thought they were inserting a port-a-cath and not a double lumen central line and it was also the same feeling I had during my second and third chemotherapy when I had dreadful problems with my blood pressure, I am feeling so nervous.

Jarrett, Mum, Theodore and I were escorted to the aeroplane first, when you are in a wheelchair you are put on the aeroplane first and you always sit near the front of the aircraft. The flight was extremely quick, one minute you are up in the air the next you are landing. Unfortunately, it was raining in Sydney when we arrived and as the taxi drove us to the Crowne Plaza Hotel at Coogee Beach, Paul had organised this for us, Ronald McDonald had no accommodation,the Motel we had booked at is being renovated and Paul did not think it was a nice place for me to stay. Paul is one of the miracle men behind my book and he has a heart of gold, I feel so fortunate to know him. The Crowne Plaza is incredible, our bags were taken to our room, there was a lovely card written to me welcoming me, flowers and chocolates in the room and the most magnificent view of Coogee Beach with the pounding waves crashing onto the delicate sand, I honestly felt like Royalty today. I thought that it would be marvellous if all children who are ill and have to have tests would be able to stay at such a tranquil place it would certainly lift their spirits. We had a telephone call from Tess who is picking us up in the morning for my interview at WS FM with Amanda Keller and Jonesy. I am so excited about this, a Sydney radio interview this means that I can let everyone here know about my story and my burning desire to inspire, raise awareness and help others. I am so hoping that this interview will create a renewed interest in my book here in Sydney and that the sales will sky rocket and then that will mean so many more funds for Brain Tumour research. I also have my appointment with my neurologist tomorrow as well as my MRI, even as I write this I have felt a wave of fear engulf me.


Anonymous said...

Dear Dainere,

I'm glad you had a safe trip up to Sydney.

I will look after Tinkerbelle and let you know how she is going. So far she has been going well and she is wanting lots of cuddles :)

Talk to you soon
x x x x

Dianne said...

Dear Dainere,

What exciting news to hear you will be a Canberra Weekly 'cover girl' I will keep watch for the issue and get a couple of extras for you to keep, or pass on to other special people in your life.

The Crowne Plaza sounds a lovely hotel and Coogee is a very nice beach-side location, relax and enjoy with Mum and Jarrett. I know you are feeling anxious about being in Sydney, but remember there a lot of people here, and now around the region, giving thanks to you for your story, thinking positive thoughts and praying for you. The tests will be over before you know it and you will be back here very soon.

Keep smiling and bring the rainbow to all around you.

Lv Dianne xxxxxx

Anonymous said...

Dear Dainere,

It sounds as if you have had a great start to your Sydney trip with the royal treatment at the Crowne, courtesy of the lovely Paul!

I hope that tomorrow's radio interview goes really well and that lots of people hear your story and are inspired to buy your book. Say hi to Tess from me!

I especially hope that all your medical appointments go well. It is so understandable that you are feeling anxious and nervous about them. All of us who are travelling with you on your journey are sending you all our positive thoughts for strength and good outcomes.

I can't wait to get my copy of this week's Canberra Weekly - I know already that your smile will be lighting up all of Canberra when it is published!!

Lots of love and warm hugs,

Anna xoxox

Anonymous said...


We are all thinking of you this week as you attend your appointments. We hope you receive good news on all your results.

I have your book pride of place in my office where everyone can see it when they walk in. This is certainly causing some interst and discussion amongst my co workers.

Josh thought it was funny when he looked out his bedroom window and saw your dad in your backyard. We may need a gate put in!!!

Luv and Hugs

Jenney, John, Ben, Josh and Sophie XXXOOO

Anonymous said...

Hi Dainere
Cover girl! Wow - I will have to go and get my copy. Staying at the crowne plaza will be great. Had the opportunity to stay there a few years ago, and they really look after you.

I will be thinking of you this week and I hope all goes well with all the tests and hopefully you will have a positive outcome.

Good Luck Dainere you will be in my thoughts and prayers. Hope to see you soon!

Luv Sandra xoxoxo

monica said...

Hi Dainere,

I am gald you have a beautiful, peaceful place to stay in Sydney.

I am looking forward to getting a copy of you being the cover girl in the Canberra Weekly.

I will be thinking of you this week and praying for you.

Keep smiling, beautiful girl

xxxx Monica

Anonymous said...

Dear Dainere
What a wonderful start to your Sydney visit this time. Enjoy the beautiful accommodation and scenery you all desrve this. We hope and pray that this is the start of many positives this week.

Cover Girl and Radio star in Sydney, what next can we expect.

Keep on believing that you will get to that rainbow you are seeking.

All our love
Nan and Pop xxx ooo

Anonymous said...

Enjoy your fancy hotel in Sydney ... you deserve it! Good luck this week and I hope Judy can give you some relief. I have been filling out your athletics forms so we can fast track it all. See you on return xx Rhiannon

Anonymous said...

dear dainere, i would like to thankyou for sharing your journey with the public as your thoughts and experiences have enlighten all that have read your story so far. i picked up your book from the local book store in outer western sydney and over the long weekend found it difficult to put down. your courage is inspiring and your family is very much a gift to be treasured. I would like to wish you all the very best for your journey ahead. i'm not that intuned with this new world of technology but i will be checking in with your blog from time to time to continue following your story and that of your families achievements on a regular basis. once again thankyou for such insight into a life filled with challenge and may we never forget that it dose happen to the most unlikely people but yet so special people, GOD BLESS, lynda.