Friday, May 3, 2013

BACK TO SCHOOL FOR SECOND TERM, SEEING MY ONCOLOGIST AND A SPEECH THERAPIST

27th April to 3rd May 2013

'Even the smallest kindness can change the course of humankind'

Many thanks to my Blog followers who have donated to Jarrett's City2Surf Everyday Hero Fundraising page.  I am so proud and excited that he has already raised over $3000 and is the third highest individual fundraiser. 

Raising funds for paediatric brain tumour research means the world to me and it is my greatest wish in life that one day a cure is found for this horrible and hideous disease.  I don't want children in the future to have to suffer as I have. 

If there was a way for doctors to screen for brain tumours, if there were more effective treatments and obviously if the diagnosis of a brain tumour was like having a cold and you were told it could be fixed easily.  How splendiferous would that be?
 
Here are some more facts about Brain Tumours:
A brain tumour is a collection of abnormal "cells" in the brain which are growing out of control. These cells were originally normal brain cells. For no good reason, they started to divide and make more of themselves. This growing collection of cells is called a "tumour." As the cells continue to make more of themselves, the "tumour" gets bigger and bigger, like bread baking. Since there is not a lot of extra room in the brain, the tumour may start to squish areas of the brain, causing them not to work properly.
Brain cancer has a devastating impact on the lives of families, it’s a ‘secret and silent’ killer without substantial funding and resources for decades.
A "malignant" brain tumour looks very different under the microscope than the normal part of the brain where it started. The more unusual the tumour cells look, the faster they usually divide and grow, and the more damaging they can be to normal areas of the brain. A malignant brain tumour grows into the normal areas of the brain so surgery cannot possibly remove all of it. Further treatment with chemotherapy and/or radiation is necessary to have the best chance of keeping the tumour from growing back but they often do grow back.
I saw on the news that Dr Charlie Teo has been invited to speak to the US Congress about Brain Tumours and the need for funding for research to find a cure.  He is very passionate about finding a cure as are the many other researchers like my own Oncologist who is specifically working on paediatric brain tumour research.
To do research though funds are desperately required and unfortunately as Brain Cancer is not as common as other cancers it is often forgotten, yet it is taking so many lives whilst there has been wonderful progress for other cancers.
Please pass on Jarrett's City2Surf Everyday Hero fundraising page information to as many people as you can. I think I remember saying in a previous Blog if every Australian gave only $1 we could raise millions for research and come that much closer to finding that elusive cure.

School went back for Term 2 , this the term for colder weather and mid semester exams.  In Sports Science we are continuing our work on Technology in Sport, this is such an interesting and diverse topic and on the first day back at school we got an assessment task to begin work on.  I am looking forward to researching areas of technological development in disabled sport. 
In English we are working on the novel Lord of the Flies.  The vocabulary in this novel is quite complex, which makes it often just a little difficult to interpret however the use of visual imagery, irony and foreshadowing is used cleverly throughout the novel. 
We have been looking at box plots, scatter plots and statistics in Maths.  I find that drawing graphs is difficult for me as my fine motor skills are not that great. 
Unfortunately, I did not have my usual physiotherapy appointment this week as Kaitlyn was not well.  I will be eagerly anticipating my appointment next week with those marvellous heat packs.  They always assist with my pain which tends to become worse with the cooler weather.
I did however have an appointment with my Oncologist.  It was an early start for me on that day and it really knocked me around. At my appointment my Oncologist discussed how I was, pain relief and school.  He has increased the dosage of my Ondansetron which is my anti-nausea medication from 4mg to 8mg.  You see I have experienced some vomiting and terrible nausea despite having my Ondansetron.  I am going to start taking some MS Contin which is a slow release medication for pain.  MS Contin is an opioid agonist product used for the management of moderate to severe pain it provides continuous pain relief, taken in the morning and in the evening.  I have to have it as granules as I am unable to swallow tablets.  School is something that was of real concern to him and he has given me advice on what I should do.  We have to meet with the school to discuss his advice.
After my appointment with my Oncologist, I then saw a Speech Therapist, who was just looking at my swallowing and offered some helpful suggestions.  She said if I am unable to swallow solid food then I could try some of the liquid drinks like Ensure, Up and Go and others like that.  She said to have food with gravy or sauce, to cut it smaller and blend it if possible.  She thought lots of stews and casseroles would be ideal. 
Next week from Tuesday, which is also Dad's Birthday, my grade are going on Camp to Tathra.  I am not going, so I will spend the week resting, doing a little school work, I am meeting my new Occupational Therapist and hopefully maybe doing something special one day. 
In Footy Tips, I have fallen behind Nana again, she is ahead by three, I am hoping that my tips this week will bring me up to her again.  I have heard that Benji Marshall is going to play for my Tigers, so here's hoping that they have a win tonight.  They are sitting in 14th place at present and that is so disappointing for them and for me. 
I received some more splendiferous rainbows of hope this week, I now have twelve rainbows hanging from my shelf which lift my spirits each morning when I wake and each night before I sleep.  These wonderful people are also donating money to the Sydney Children's Hospital Foundation Brain Tumour Research Fund with every rainbow, so they are truly inspirational and generous.
A wonderful surprise was receiving the most comforting and magnificent 'snugglybug rug' from Helen and her amazing friends who have created the most warm and precious rug for me to be snuggled in.  Many, many thanks, it has made a difference already.  
Wishing you an extraordinary week, many it be filled with many rainbowiffic moments and of showing kindness to others.
This is Jarrett's Everyday Hero Fundraising Page Poster

6 comments:

Anonymous said...

Good Morning Beautiful Girl,

I'm so sorry that you are experiencing so much pain and nausea; yet, you continue to smile. I am in awe! You are a courageous example for all!

You have really helped to raise awareness about brain tumours, particularly paediatric brain tumours. You have achieved so much in such a short time - congratulations! Jarrett is doing so well in helping you to spread the message - you truly are everyday heroes!

Enjoy your rest time next week.

Sending you lots of rainbows and big hugs,

Anna xoxoxoxox

Anonymous said...

Dear Dear Dainere, ""Laughter ia a burst smile ""
Thought you might like that .

WE have the utmost respect for Dr Charlie Teo , he is an amazing Man and surgeon.

Have you thought about contacting the local tv and radio stations , about support for Jarrett, not sure of thats allowed , mum would know .

School continues and how you love school.

So Sorry you could not have your physio this week , and also sorry Kaitlyn was sick , hope she is ok for next week .

WE are also sorry to hear that you needed to have the dose increased ,to stop the vommitting .

WE think it is very wise for you stay at home and not go to Tathra.

Happy Birtyhjday to dad for next Tuesday we hope you can all have a nice day . Your dad is extra special .

oh it will be nice for you to meet your new occupational therapist, we are sure the two of you will get on very well.

WE wish you a Good week DAINERE , take care and stay warm
love
stuart and meryl
xxxxxxxxxxxxxxx



Anonymous said...

Dear Dainere,

Jarrett is so close to his target and I'm sure the donations won't stop there. Love those shoes!

I'm sorry to hear that you missed your appointment with Kaitlyn. I hope she is feeling better.

It is good to hear that your Oncologist was able to help you. I hope that the advice he gave regarding school is possible. I know that school is so important to you.

I wish I lived closer, as I'm quite good at making stews, casseroles and soups. Blending food will make it easier for you and you will still be getting the nourishment you need.

I'm sure you will feel very comfortable with your new OT.

This week should give you a perfect opportunity to rest. I'm sure you will all do something special for your Dad on his birthday.

The rainbows sound magnificent and the rug arrived in good time to keep you warm over these cooler months. I heard that it was -1 in Canberra, overnight.

Rest well,

Much love ,

Elizabeth xoxo

Anonymous said...

Hi Dainere
So glad to read your blog each week. Thank you for updating us so often. I hope the increased pain medication helps you a little. You are so brave.
Your awareness for raising funds for research & a cure for brain cancer is fantastic. It is my pleasure to support Jarrett & you. We should be thanking you.
I met a young girl named Erin, in ward C1 North at Randwick over the weekend. My son was admitted to theatre for manipulation as he has broken his collar bone. We were in a bed opposite Erin and her mum was telling me that she turns 13 next month, & just diagnosed during the week, had surgey & it sounds like a journey just begun.
There world has been turned upside down. Erin's mum was telling about her illness up to date & all I could think of was you & Charlotte Wyse. The faster a cure comes,the better.Please let's all keep Erin in our prayers too. She is just gorgeous & wished mt son & I a restful nights sleep. Erin needed the rest, we were fine!

I tipped Tigers - big mistake that was. I was unaware they had several players injured but at least Benji played. I was coming 2nd in my comp, but feel I've blown that position after this week's upsets. How did your Nan go?

Make the most of your restful week. I will be at home with Ben too as his right arm is in a sling & the surgeon wants him to keep it as still as possible so no school for him!

Take care, Love always,
Fran xoxo

Anonymous said...

Dear Dainere,

Wonderful quotation!

Great news about Jarrett.

I'm sure that a cure will be found. I saw Dr Teo on TV talking about his upcoming US Congress speech.

Best wishes to your father for his birthday.

I hope you can do something special next week.

Sending love and hugs,

Michael

Cassandra Polyak said...

Thinking of you through this hard time. Thoughts, prayers and best wishes though out the next few weeks. You're so beautiful, special, inspiring, brave, courageous, positive, determined. I aspire to be more like you. Your story touches the lives of so many. Have a restful week, stay warm and dry on these horrid rainy days. You're very special to me and you always will be gorgeous Dainere. I love you! Lots of love always Cassie XOXO