Friday, April 26, 2013


20th to 26th April 2013

Yesterday was an extra special day, a day for all Australians to remember those who have fought for our Country; those who have given us freedom, those who lost their lives and those that are still fighting .  They are truly courageous heroes. 

Anzac day is probably Australia's most important national occasion, it marks the anniversary of the first major military action fought by Australian and New Zealand forces during the First World War.

ANZAC stands for Australian and New Zealand Army Corps.  The Soldiers in those forces quickly became know as ANZAC's and the pride they took in that name endures to this day.

This week I had to show courage as I said goodbye to my extraordinary Occupational Therapist, Tom.  He has been so supportive in helping me with equipment for school and home and he has also been a splendiferous friend.  He is off to the Philippines to weave his magic over there, they are so lucky to have him.  In life we have people come into our lives who truly make a difference and he is one of those people who I have been blessed to have met as part of my journey.

Another guardian angel in my life is Kaitlyn, my physiotherapist, she is there for me every week, relieving me of my pain.  This week she worked on my neck, lower back and that ever troublesome right foot.  At the end of my appointment I had those absolutely warm and delightful heat packs on my neck and spine. 

I have not felt too well this week with pain, nausea and just not feeling very well.  Resting has been an important and much needed activity this week for me as next week is back to rush of school and other appointments.

The appointments that I have next week are one with my Oncologist from Sydney and after seeing him I have an appointment with a Speech Therapist who may be able to offer some suggestions to assist with my continuing and difficult swallowing issues. 

I have been listening to Lord of the Flies on a CD for English, we have to have it read before returning to School. It is not really the type of novel that I would select to read for enjoyment.  It is an extremely dark and heavy novel, however it is written well and the language used draws you into the story.

Many, many thanks for those followers who have so generously donated to Jarrett's City2Surf fundraising, I am so excited and proud to say that he has now raised $2500. It is so incredible and with 107 days to go until the event, he is hoping to raise even more money.  Here is the link again to his Everday Hero page, please pass this onto family, friends, neighbours, around your workplace, school and to local businesses.  Together we can make a difference.

There were not football games last weekend so I am still leading the tipping by one.  This week I already have one right because I choose the Roosters against the Dragons in the Anzac Day match.  Nana and I have made quite different selections this week so that will separate us by the end of the round.  I am hoping that my Wests Tigers can pick themselves up and find an inner strength to push themselves to victory.

Many thanks to Lori and Merran who sent me the most magnificent parcel in the mail this week, it was an envelope filled with the most splendiferous drawings done by students in Prep/Grade 1, their teacher Emily told them about me.  They are so special and I will treasure them always, when I looked through them I thought they were the most rainbowiffic rainbows I had ever seen. 

I will leave you with some words out of a book that Tom gave me.

"I feel so blessed - of all the billions of people who could have shared my path, I stumbled across you."

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.

Friday, April 12, 2013


6th to 12th April 2013

We have had the most incredible Autumn weather here in Canberra this week.  There is no season in all the year so beautiful with kaleidoscopic colours, so radiant with the freshness of the breeze or as glorious with a gentle warmth in the air, it is a lovely time of year.

We had to wind our clocks back an hour, daylight savings came to an end.  It is so delightful to wake up to see the sun waking and rising also.  However, it is also just a little melancholy that the sun disappears behind the horizon that much earlier.

This was the last week of Term 1 at School, it has gone so swiftly, has been so incredibly busy and filled with many academic challenges but at the same time it has been enjoyable, as you know, going to school is important to me.

We have already begun to look at our next unit of work for Sports Science; which is technology and Sports, this is not just about computer technology but also technology in areas of equipment, playing surface and clothing.  I think that this unit of work is going to be extremely fascinating.

In Maths we are doing Statistics Work, doing cumulative frequency tables and graphs as well as box plots.  Once you understand how to do it, it is quite easy to master. 

For English we had to do our presentations for our Money Matters Unit.  I did a video presentation based on a current affairs type show for teens where I interviewed 'Steve' who was actually Jarrett who had just got his first job.  We discussed how he went about getting it, facts about tax file numbers, superannuation, employment conditions and pay rates and saving the money he would earn.  'Blair' who was Nalani, was an expert from The Australian Taxation Office, giving advice on tax file numbers.  It was tiring putting it all together but I was really pleased with the finished product.  The next thing to do is to read The Lord of the Flies, I am fortunate enough to have it on CD so I can listen to it rather than trying to read the extremely small print in the novel.

I had my wonderful physiotherapy appointment as usual.  Kaitlyn is so fantastic, she worked on my neck which has been terribly painful, then she did a little on my back and finally my foot.  She used the voltaren gel with the ultrasound again, this gives it some relief for a while. 

Apart from school and physiotherapy I have been helping Nalani study for her exams, doing a little knitting and some Sudoku puzzles. 

Now for some exciting news from a fundraising perspective:  Jarrett has decided to run in the City2Surf this year, not for himself but to assist me in my fundraising efforts.  The race itself is a 14km run along a challenging course in Sydney, including the famous 'heartbreak hill'.  It is on the 11th August and Jarrett has secured a Gold Entry place.  He is running as part of Team Kids to raise those so desperately needed funds for The Sydney Children's Hospital Foundation Brain Tumour Research Fund.  It would be so wonderful if he could raise a huge amount of funds, it is so important that one day a cure is found.  The race for Jarrett will be challenging, just as the journey is with a Brain Tumour.  This is the link to his hero page -
Please consider supporting him, you are also welcome to share the link. I believe that together one day we can make a difference to the lives of children and their families who receive the devastating diagnosis of a brain tumour.

I feel so blessed also because I have been sent during the last week the most rainbowiffic and beautiful 'Rainbows of Hope'.  Helen from Hugs' n Kisses organised this extra special surprise and fundraising initiative for me.  People have sent me the magnificent rainbows with a $5 donation to go to the Brain Tumour Research Fund.  I have hung the rainbows from a shelf in my room and each morning when I wake and every night before I go to sleep I see them and they fill my heart with hope and love.  Thank you so very much to Helen, Christine, Annette, Marilyn, Janine, Lo and Liz and family, your kindness is astounding and I am so humbled by what you have done and will treasure those rainbows always. 

The splendiferous 'Rainbows of Hope' that people have sent to me.  I will treasure them always.

In Footy Tipping I have now slipped one behind Nana, who has now taken the lead.  Pop is still a little behind but he is very analytical in his picks so as the season goes on he usually catches up.  Poor Benji Marshall is out with a toe injury, the Tigers will miss his extraordinary style of football but I guess if they live by my saying of 'You Have to go Through a Storm to get to a Rainbow', they will find an inner strength to pull through this difficult time. 

If you see someone this week that is not smiling, share your smile with them, not only to brighten their day but to also create happiness in every ones lives. 

Saturday, April 6, 2013


30th March to 5th April 2013

Easter was a special time, a time to be grateful for what we have in life.  Easter Sunday marks the day Jesus was resurrected. This is a joyous day for all and reminds us of the promise for eternal life and God's love for us all. As I reflect on Easter, I think of my journey over the past few years, they have been difficult and challenging, yet also a time of many joys and new wonderful friendships.  My journey, which I believe that God has given me for a reason, has inspired me not only to raise awareness about brain tumours but also the so desperately needed funds so that researchers may one day in the future find either a cure, a way of early detection and more successful treatments.

This has been a short week at school which was a relief because after competing in the Cross Country I have been extremely sore and fatigued. 

In Maths we have continued our work on Money Matters, including doing some work with excel spreadsheets.  We wrapped up our unit in Sports Science by listing what improves and diminishes an athletes fitness.  In English we have been working on a Money Matters unit and researching things like tax file numbers, bank accounts, credit, industry awards, buying a car and superannuation.  We have our new novel which we have to read before the first week back at school next term.  The novel we are reading is Lord of the Flies. 

It was wonderful to have physiotherapy this week, with the amazing Kaitlyn working on my right heel and foot using voltaren gel and the ultrasound to try to provide some relief from my stinging pain and swelling.  She also did some work on my neck which is stiff and painful.  Then those absolutely fabulous heat packs provided me with some more relief.

I also had a visit from my care team nurse, my oxycodone has been increased by another ml, I now take 8ml four times a day and can have 4ml breakthrough doses as required.  My panamax remains at 10ml as that is the most I can take of that, as it can cause liver problems if you take too much of it when you have it regularly.  She talked about getting me a lovely soft and comfortable cover to go over my mattress to make it softer, my bed is beginning to feel hard and uncomfortable for me. 

My throat still feels so restricted, it feels as though it is as thin as a straw and I find it frustrating and it is not only when I am eating, it feels that way if I am swallowing saliva and sometimes when I have my neck turned to look at something. 

In footy tipping I am still leading but just by one to Nana, poor Pop has fallen behind, but he is known for his comebacks and it is early yet so he is still in with a chance.  My Tigers are playing Storm this week, I believe in them and hope that they can dig deep and produce a win. 

I sent a cheque off to The Sydney Children's Hospital Foundation Brain Tumour Research Fund this week, it is such a wonderful feeling to be contributing and trying to make a difference.  Every little bit counts, imagine if every person in Australia gave just $1, that would be an amazing $22 981 979.00, this is what our current population is. 
Raising much needed funds for The Sydney Children's Hospital Foundation Brain Tumour Research Fund at my Rainbow of Hope for Brain Tumours Stall

To all the people who have been helping me in my endeavour to raise those desperately needed funds, you are all splendiferous, your hearts are truly filled with love and kindness and I wish you many rainbows throughout your lifetime.