Friday, April 19, 2013


13th to 19th April 2013

As I sit typing this entry; attempting to keep warm, the wind is howling ferociously outside blowing the lustrous, golden Autumn leaves from the trees and trashing them savagely onto the dry, brown grass. 

This is been a most horrible week for tragedy, these events have shaken many people around the world, of course the events I am referring to are:  the Boston Marathon Bombings and the Waco Explosions.  Innocent lives taken and people's lives changed forever. 

Before I tell you about my week, I must thank those people who follow my Blog who have so generously donated to Jarrett's City2Surf fundraising.  He is helping me in my continual effort to raise awareness and funds for Brain Tumour Research.  My life goal is to do as much as I can to make a difference.  A cure will not be found in my lifetime but my wish is that no children in the future will have to suffer as many others and myself have had to.  There is no screening tests for early detection for a brain tumour, the treatments are harsh and cause life long cruel side effects and there is no cure. 

Here are some facts for you to think about and please pass this on to family, friends and people in your workplace, we are the only ones who can make a difference as funding is virtually nothing for brain tumour research. 

  • Brain tumours are one of the most under studied of all cancers, yet receives very little research funding. 
  • No significant improvement has been made in survival rates in almost two decades.
  • Brain tumours are now the leading cause of cancer death in children and young adults.
  •  Brain tumours strike adults and children alike.
  • No risk factors have been identified and no screening procedures are in place.
  • Brain tumours carry the highest individual financial burden of all cancers with an average cost been five times higher than any other cancer.
Here is the link again to Jarrett's fundraising page, it would so splendiferous if he could be the highest fund raiser, imagine what a difference that could make to helping researchers work towards a cure one day for paediatric brain tumours.

I have been relieved to be on School Holidays, School took so much of my energy last Term.  I enjoy learning and challenging myself but I am finding it more difficult as my pain and nausea increases.

This week brought a visit to my Paediatrician, who is so very caring, we talked about pain relief, school, my nausea and other issues which are caused by the tumours putting pressure on my spinal cord.  I also had my usual physiotherapy appointment, as always I was looking forward to it.  Kaitlyn is exceptional and able to provide me with some relief which I am so grateful for. 

The other visit I had was from my care nurse, Karyn, she talked about how I am feeling, school, medication and we did a chart that rated my pain, nausea, mobility, general well being, breathing and swallowing.  She is also very lovely and I feel very comfortable with her.

One of the extraordinary people in my support is leaving, Tom my Occupational Therapist who has done so much for me has a new job in the Philippines.  I am rather devastated as he is someone that I feel really confident and comfortable with.  I think he is splendiferous and so wonderful at his job.  I will miss him.

I have begun listening to Lord of the Flies, it is written by the English author  William Golding, it is about a group of English boys  stuck on an uninhabited Island. they try to govern themselves with quite disastrous results. It is about human nature and individual welfare versus the common good. 

Stay strong this week, despite any hurdles that may come across your path and many thanks again to those that have contributed to raising funds from brain tumour research.


Anonymous said...

HI Dear Dear Dainere , yes it is getting colder now isnt it and the wind has got up here too .

Wow weve just about recovered now , i have not felt very well all week , so hence im afraid your little gift from Bolivia has only just been sent today .

Oh its heartbraking isnt it about the tragedies in the USA , why do people do these things i just dont understand it , sometimes i think humans are the cruelest animal on the planet .

Yes Dainere you are so right , but please think of how much you have raised in other projects my dear friend , and its early days yet .

Yes you must rest up now whilst on holiday and keep warm too as the winter months approach .

We are so glad to hear that doctors and nurses are continually talking to you and helping you .

Oh so sorry to hear that Tom is leaving for the Philippines , you have gotten to know him so well .

Dainere i have a suggestion to make about Jarrett and his fund raising but i will send you an e mail about it.

lots of love , hugs and kisses

stuart and meryl

Anonymous said...

Dear Dainere,

Yes, we have left Summer behind us.

So much human tragedy throughout the world.

Medicine will advance as it always has done. Your efforts will make that progress quicker.

So sorry that Tom is leaving.

Heard this recently: 'keep smiling, it makes people wonder what you've been up to!'

Sending rainbows,

Michael and Clare

Anonymous said...

Dear Dainere,

We have had a most beautiful day here today, after such heavy rain yesterday. We escaped the fierce winds, thankfully.

The US is in the news for all the wrong reasons, presently. Lord of the Flies is an example of just what humans are capable of.

Jarrett's fundraising efforts are progressing very well and I am sure there will be more to come.

Thank you for those facts regarding brain tumour research. I had little idea about this.

I hope that you are getting lots of rest. It is very encouraging for a teacher to hear a student state that school is important to them, also to see how well you express yourself.

Your care team sounds as if they are all very supportive. That is sad news about Tom, but I'm sure that whoever replaces him will look after you well.

Have a restful week, keep warm and happy.

Much love,

Elizabeth xoxo

Anonymous said...


It is getting cold !!! Such beautiful autumn colours around though :)

Thanks for posting about Jarrett's run, I have donated and put the link on my facebook so other Canberrans will know about it. What a wonderful brother !!

There are lots of sad stories at the moment from around the world but as you often point out there is also so much good and so many wonderful stories.

I saw a post about some stray dogs in Russia, who every morning board the trains to the city from the outskirts of town. The people on the train give them food etc. Then at the end of the day, they hop back on the train, back to the suburbs for the night.

Copy and paste the link in your browser, it's a really lovely story

Stay warm

xxx Monica