Monday, October 18, 2010


17th and 18th October 2010

On Sunday the weather still remained wintry with a wind that chilled you to the bone, yet if you found a sheltered corner of sunlight the glorious warmth provided a comfort, like a large, soft, fluffy blanket wrapped around you.  

Jarrett had his running training, Sunday's are always a long run from the AIS, he ran for an hour and pulled up strong which was terrific considering he had run 3.8km in total on Saturday night.  We went for a walk around the AIS and were lucky enough that most of the paths we took were sheltered from the wind.  

I came home and read, then played Upwords, as I was sitting playing Upwords, I had dreadful pins and needles travelling through my heel and ankle which was followed by pain which felt like extremely sharp needles were been dug into my skin and through to my bones, it virtually took my breath away.  I needed to sit with my feet up, heat around my ankle and heel and panadol to help ease the pain.  

Luckily by the afternoon it was feeling a little better because we were going to a working bee to help make ribbons for Brain Tumour Awareness Week for our politicians to wear on their last sitting day in Parliament. We cut, pinned and dipped the tips of the ribbons in glimmering silver glitter.  The ribbons are grey, when we speak of our brains we often hear them referred to as grey matter.  By the end of the session we ended up looking like fairies all sparkling magically from the glitter.  We also discussed the Train for the Brain Fun Run and Walk which is on 6th November, it is going to be a spectacular day and Sarah is really looking forward to pushing me.  The Train for the Brain Fun Run is being held at 10am at Lake Burley-Griffin.  The two primary goals of this event are to raise awareness in the community about brain tumours and secondly to raise funds for Dr Charles Teo’s charity Cure for Life Foundation.  If you are interested in being part of such a special day you can register at or from 8am on the day at the venue.

I was really fatigued and my hands were both inflamed and painful but helping for such a great cause was worth the pain.  After a shower and rest I felt more refreshed and decided after dinner to ride the exercise bike, even though it is not a weight bearing activity it is helping to build the muscles in my legs back up which have all withered away terribly from my treatment and not been mobile.  I rode whilst watching Junior MasterChef and ended up riding for twenty minutes, at the completion of my session I found that I felt a little dizzy as well as my ankle was really swollen, I did not realise when I was riding, it was probably because of the distraction of watching television. 

Snuggling up in bed with a hot water bottle and my bears comforted me and I just wanted to have a good night sleep.  I can't understand why I must be plagued with pain and stiffness throughout the night, again I did not sleep well, when I don't sleep well neither does Mum, I wish that both of us could just be blessed with one night that we sleep without disturbances. 

The sun greeted us this morning but it was deceiving because the wind had a chill factor that was like being locked in a huge meat freezer.  I did not have school today which I was relieved about because my weekend craft activities had left me with weakened hands especially my right one.  I did some reading while Mum did some housework and then I worked on my Raising Awareness Integrated Studies Assessment Task, as I typed up my research notes I was amazed at the statistics about Brain Tumours.  Did you know that three hundred children in Australia each year are diagnosed with a brain tumour, men are more likely to have a primary tumour than women and that brain tumour research receives only a minimal amount of funding from the Government compared to other types of cancer.  All the more reason for me to remain passionate about raising awareness and funds for Brain Tumours.  Once I present my information and action plan at school I will write more that I have found out and what I hope many Australians can do to raise awareness.

Even though I enjoyed working on my project, it really fatigued me, so I needed to have a rest, I fell asleep for half and hour.  On waking I played Upwords, Disney Princess Memory Game and did some physiotherapy for my left wrist by working with playdoh. 

In the afternoon I had a splendiferous visit from Anna, you may remember me posting a picture on my Blog of my book visiting Greece, well Anna is the wonderful person who took it over there.  She shared my story with all her Greek relatives and one of her relatives Popy sent me a beautiful message on a digital postcard of Greece she said "We hope that every child around the globe takes courage and strength from you.  I was really moved after reading your book and I assure you that all my Greek students will learn your story and how special you are".  I was so touched by the message and it made me realise how important to everyone it is to share my journey and to continue sharing it. 

It was then time to go to my appointment with my Paediatrician, he is a very caring and understanding doctor, he did a thorough examination of me.  I have put on a little weight and now weigh 29.3kg, but my height has not changed any and usually for a person my age you are going through a growth spurt.  The radiotherapy can cause this to occur and that is why the endocrinology team are looking at the possibility of me having to have daily growth hormone injections.  My blood pressure was good, my pulse was a little low and my skin was cold to touch, I had no ankle jerks when they were tested.  We had written a detailed description of what occurs when I have had seizures and on what dates, he is going to monitor them and if they become more frequent I will require medication however it does have side effects so he does not want to rush into giving me that particular medication.  I have to have blood tests done on Wednesday and he will then contact us once he receives those results, more tests will be organised based on those results.  He is contacting my Sydney team tomorrow and he wants to monitor me more closely, I now need to see him every month. 

I am going to ride the exercise bike now, when I am doing that it helps me to feel that little bit free and normal.  My heel and ankle are deplorably painful but if I can just get my muscles that  bit stronger each day I will be able to take small steps, I think I will set myself a goal of being able to walk with my rollator two laps of the kitchen and family room by Christmas. 

I found a beautiful Irish Blessing I would love to share with you all, thank you for always supporting me, I am truly blessed.

'May the wings of the butterfly kiss the sun

And find your shoulder to light on,

To bring you luck, happiness and riches

Today, tomorrow and beyond'.


Anonymous said...

Dear Dainere,

What a busy few days you have had!! So glad to read that your visit to the paediatrician was today and that it went well. Good that you have put on some weight. Not long to wait until you have your blood tests either. Hope it goes well on Wednesday.

Very interested to hear about the grey ribbons you were making for the politicians on their last sitting day. I hope there is something controversial on that day in parliament so we see them on television! Politicians with glitter on should look good! How many ribbons were made?

Saturday here was a very cold, windy and miserable day. It was so windy no cricket matches could be held. (I guess the bails would have been blown off all the time!) My Canberra son said his Saturday match was called off, washed out, on Friday because of the rain. Not a good beginning to the season.

Great news about Jarrett's winning ways! It's wonderful that he hasn't had any more asthma attacks and that his breathing exercises are working well. Hope this continues throughout the season.

You are remarkable in the way you persevere with your exercises, pushing through the pain barrier and building up those muscles. Congratulations! Setting goals is a very positive thing to do.

Exciting news about Anna and your book going to Greece! Your inspiring story and journey is making a BIG difference to MANY people in LOTS of different places. Thank you for your willingness to share your insights and understanding. People are being made much more aware of the need for funding, among other things, of course, including your personal courage.

Thank you for sharing the lovely Irish blessing. The thought of butterfly wings lighting on your shoulder is special, a real blessing.

Hoping and praying for a restful night for you and yours.

Thoughts and prayers,


Anonymous said...

Hi Dainere, yep the weather is real Strange at present , its cold here in Sydney so I guess canberra is worse.

DOesnt a shwer make all the difference , oh so nice , especially when you dont fell your best.
OH yes and I missed junior master chef on sunday , but saw it last night , silly of me to have missed it .

My dear Dainere , if i may make a suggestion , try not doing to much exercise just prior to going to bed , instead try and focus on relaxation say an hour before you snuggle up in bed .

I look forward so mmuch to reading about your brain tumour awareness research.

I came across this little bit of info Dainere:

Each of us in in possession of a magical bank, the banks name is Time, , every day when we awake we recieve 86,400 seconds, as a gift of life, when we go to bed at night any remaing seconds are not credited to us, what we dont use that day is gone till the bank is refilled the next day , so we must enjoy every waking moment , each day is an new day , which we have hopes and dreams for . I wish you lots of happy dreams and wish all your hopes come true.

lots af love
stuart and meryl xxxx