Friday, August 5, 2011


30th July to 5th August 2011

Another week has come and gone,   the weeks go so quickly, before we know it, it will be Christmas time.  In a lifetime everyone has a dream or goal they would like to achieve.  I have been watching MasterChef on television and many of the contestants have spoken about realising dreams.  I think that if you picture yourself achieving your special dream or goal, if you really place yourself in that picture, think and hope deeply, take positive action then you will be surprised to find how your visualisation can become a reality.

I found a wonderful new craft activity on the weekend, it is called latch hook craft, you use a piece of canvas with a printed illustration on it, have coloured wool that matches the colours of the illustration, then you have a tool called a latch hook, using that latch hook you pull the wool through each hole.  When it is finished you can make a cushion, wall hanging or rug from it, they really look amazing.  You need patience and time but when you finish it you have something to be proud of.  The one that I got was a pattern of a sun and a rainbow, I will be taking it to Sydney with me to help the time I have to spend in hospital and at appointments more bearable.

At School this week I have continued with algebra in Maths looking at positive and negative number substitutions, today in English we finished reading and listening to The Merchant of Venice, in Science we are continuing worksheets on Chemical and Physical Reactions, in Textiles we are working on a design for a calico bag that will hold our work and in Christian Living we learnt about the music within us and how having a positive attitude can change the outcome of an event. 

On Wednesday I had appointments at Canberra Hospital, firstly I saw the Cardiologist who did an echo cardiogram on my heart.  Often when you have chemotherapy it can affect your heart, fortunately my chemotherapy did not cause too many problems in the area of my heart, although my heart beat has become irregular and my heart is a little smaller than average it appears to be healthy at this stage, which is terrific news. 

Then I had to see the Endocrinologist, that is when I did not receive the greatest news, my cholesterol remains high and this is of concern to him, I have to be put on a low fat diet and be monitored closely, if there is no improvement with diet then they will look at medication but because the high cholesterol is caused by the treatment there is no guarantee that the medication will work.  It has also been confirmed that I have insulin resistance which is the early stages of type 2 diabetes, this has to be watched and treated also.  My thyroid appears to not be functioning correctly either and there has been a drop in my thyroid function test.  He ordered a new blood test for that and if it has dropped again, I will need to have further tests done for this. 

We had to fill in all the paper work to apply for me to be able to have the Growth Hormone injections, it can take approximately two months for approval, that works out because when you have had a brain tumour and the treatment for it you can not have growth hormones until two years after completion of treatment and that will be on 17th November this year.  I will have an injection every day, there were various types and brands but the one best suited to me was an injection with no preservatives in it.  Once I start having the injections which will initially be at a high dose, my legs will begin to grow, they are hoping that in the first twelve months I will grow five centimetres.  I have been told before that only my legs will grow, my spine will never grow because of the high doses of radiation I had.  There are side effects from the injections and that is that in the first three to six months whilst I am on them that I will experience severe pain in my bones and muscles as they grow, I will require pain killers and physiotherapy to assist this side effect. 

The Endocrinologist also told me that the period two years to five years post treatment is when recurrent tumours occur and if the remaining tumour grows or new tumours appear I have to be taken immediately off the growth hormone treatment.  The Endocrinologist also sent me for several blood tests for some painful symptoms I have been having, he is checking out lactose intolerance, heliobactor, crohns disease and coeliacs disease. 

Today I had physiotherapy with Rhiannon, she worked on my neck which has been sore and tight, it was so tight it was making my head tilt to the side.  She then worked on my still repairing heel, my calves and hamstrings.  Rhiannon has put so much time and effort into my rehabilitation and I feel so blessed to have her. 

Mum and I leave on Sunday for a busy week in Sydney, I have so many appointments and tests, we are going to be near the beach but unfortunately won't get much time to enjoy it, I have also checked out the weather forecast and it looks rather gloomy with rain and winds predicted the whole time we are there.

Jarrett is running in a 3km race this weekend then his training tapers because on Saturday it is only two weeks until Cross Country Nationals.  We are all very excited, we are all hoping that this Nationals will be better than last year for him, when he had his severe asthma attack. 

Nalani continues to do well with her rehabilitation for her knee, she is still going to the gym and has begun running again.  She is extremely busy at School, she has four assignments at the moment all due in two weeks, as well as she is looking at options for further education next year.  She wants to do study in the area of sport, either massage, fitness, exercise science and coaching or sport management.  It is a very exciting time for her making all these decisions.

Many people comment on the wigs that I wear, some people have even thought that it is my real hair.  Although it would be nice to have real hair, I do have some but it is so sparse and patchy I feel that I am fortunate that you can get such lovely wigs,  I can have a new look, style and colour every day, not many people can do that.  I have purchased many of my gorgeous wigs from a place called Play With Hair, they are an online company and their web address is, you should see all the different wigs they have, you may recognise some of the ones that I have worn in photographs and on television.  Having acess to lovely wigs is important for many people, especially teenagers and women living with cancer because a wig can make them feel more confident and beautiful when they are going through such a difficult time in their lives.

Keep following all your dreams, never give up on them or yourself and one day you will find that your vision becomes a reality. 


Anonymous said...

Hello Dainere

A tough week receiving all that medical information and news. I pray for you all the time Dainere and hope your time in Sydney, having all the tests will be of benefit to you. You are very unique Dainere, and you bring a smile to my face each time I read your inspiring quotes.

My son is in year 8 too, studying the same Science as you, Maths topics the same as well. Keep working as best you can but go easy, you need energy for other things!

Let's hope Sydney puts on beautiful weather for you and your Mum. This week's been perfect. I remember doing Latch Hook when I was young. You're right, it becomes addictive and you will be glad to have that to focus on while here. I began to Crochet when I was in year 5, back in 1979. I have made numerous rugs over the years for my own babies and nieces/nephews. I started two rugs three years ago, one Dragons colours and the other Tigers colours, each for my two sons. They are very large, big enough to fit a Queen bed but I still haven't finished them. My neck becomes painful looking down all the time and my shoulders ache so I just have to do a little bit at a time, slowly. But it's addictive. The rainbow image sounds pretty and perfectly suited to you.

I think the Tigers are winning as I write, good luck with your tips this week. I tipped the Tigers - Go Boys!!

The little boy, Jarrod, from my sister's class is not doing so well at present, he is undergoing treatment which only you can understand. I pray for him too. Have you heard of Charlotte Wyse? She's on my prayer list too.

My sincerest best wishes for your time in Sydney, you know I'm thinking of you.

Love always, Fran xoxo

michellemma said...

Hi Dainere,
I purchased your book last week and it arrived Thursday. I will start reading it tomorrow. This year I moved to the Central Coast of NSW for work I am a primary school teacher. Previous to this I was a Canberra girl:), so I can understand where you come from with Canberra cold. (I am so happy to have escaped the winter) I will donate my book once i've read it to the school I work at in Kincumber and the librarian will also show your book at her next library conference. This will reach all schools on the Central Coast. I hope to help you get your book out there.
Thank you for sharing your journey, I think you are a beautiful strong person! Take care and I will continue to follow your blog.

Anonymous said...

Hi Dainere , I hope the sun comes out for you in Sydney this week it has been lovely weather , Ruby-Mai who you you were rooming with last November insyxney has been reading your book , she has been inspired so much that she held a fundraiser in our apartment for all our neighbors and charged entry fee to view her paintings and sold cards she had made , on total she raised $55 which we took up to the children's hospital . I was very proud of her and thankyou for your inspiration through your book , to help others , although ruby was only in hospital for a short time she has more awareness of other children and whAt they are going through. We wish you all the best in Sydney And pray all goes well for you , lots of love to you Chris and ruby x

Anonymous said...

Hi Dainere, oh how right you are are about dreams and goals.

Meryl and I hope you had a good trip to Sydney , and will hope to catch all your news about what happens this week at the hospital , It will be a long hard week for you , and mum , so hug each other and stay close . BUT you will come through this OK Dainere , because of your fantastic out look on life .

I will continue to pray for you at our chapel at Calvary every day before i start work at the hospital , Remember you are Never alone , your army of followers is right beside you , and so is all your wondeful family .

Good luck Dainere ,

LOts of love , hugs and kisses

Stuart and meryl xxxxxxxxxxxxx

Anonymous said...

Hi Daniere,
It made me smile when I though about you latch hooking. I remember making a rug when I was about your age and how addictive it was. I think that Christmas all of my family got cushions!
I'm hoping that even though the weather is forecast to be rainy in Sydney, at least it will be warmer than Canberra. Wasn't last week beautiful. All of the bulbs in my garden are growing rapidly and I can't wait until they start to show their beautiful blooms.
Although you will be busy with all your appointments and tests, I hope you and your mum get to do some nice things as well. You are blessed to have such a wonderful family and I'm sure it will be lovely to all be together again after this week.
Sending you lots of love, good luck and beautiful rainbows.