18th to 24th May 2013
Liquid water droplets of fog suspended in the air, translucent frost crystals scattering light in many directions and arctic southerly winds have invaded Canberra this week.
I am thankful for the heat of my electric blanket , scrumptious mugs of hot milo and Mum's hugs to comfort me during this dreadful weather.
This week I have mostly slept, I have not been able to attend school for normal lessons at all. I have done a little work from home though when I can manage to keep my weary eyes open.
On Tuesday however I was determined to go for a special presentation that had been planned from last Term. Jarrett, Nalani and I were doing a special presentation to Senior School on Brain Cancer. We began with an introduction and then showed an excellent movie that Jarrett had made as part of a Biology assignment on paediatric cancer and also investigated my cancer as part of it. We then showed a power point containing facts about Brain Cancer, we even had music to accompany it to make it more effective.
Nalani read some passages from my first book, followed by some information about my treatment and side effects. We then spoke about the Fundraising that I am so passionate about and this lead to Jarrett then speaking about his City2Surf Run to raise awareness and funds for The Sydney Children's Hospital Foundation Brain Tumour Research Fund.
Nalani reminded people that it is through raising awareness and funds that other cancers like Leukemia no longer have the high fatality rates they used to. She emphasised that if more awareness and funds are raised about Brain Tumours then perhaps the same results could be achieved.
I know that a cure will not be found in my lifetime, but I hoped that through the presentation that people would go out in the community and continue to raise awareness and funds so that one day my greatest wish of a cure being found will happen.
Speaking of fundraising, Jarrett has now managed to raise over $5000, this is just so incredibly splendiferous and through people's amazing generosity which is humbling to both Jarrett and I that research can be done.
Here again is Jarrett's City2Surf Everyday Hero Fundraising link so that you can continue to pass it on to as many people out in the community as you can. http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90
I know that he also has a Blog on his fundraising page which he updates.
I now have two nurses that are coming to visit me, Leah and Karyn and a new doctor Dr Anne, they are taking extra special care of me and helping me to feel more comfortable.
At physiotherapy this week the extraordinary Kaitlyn worked on my neck which was just so sore and stiff. Then I had a wonderfully warm heat pack on it which felt marvellous. Heat seems to be so soothing for my pain, the person who invented heat packs and hot water bottles is a genius!
I also had an appointment with my Paediatrician, he is also pretty amazing and takes good care of me. He asked me lots of questions and examined me. He found that my swallowing problems are also been caused by a palsy of my palate, this is all part of my tumours pressing on my spinal cord, just like my balance, stiff neck and shaking problems.
In footy tipping Nana is still ahead, I think she may just win this time. I was so very excited to hear that the Tigers have finally won a game, it was very close and they beat Nana's Team, The Cowboys.
I want to thank everyone for their lovely comments and stories on my Blog. I think that the story that Carol wrote about the rainbow ribbon was just so inspiring and beautiful.
This week I had Mum help type this with me, she is so much quicker, she is a touch typist. I may have to get her to do most of the typing for me in the future also. I supervised that she was typing what I wanted to say.