TIGERS WIN AT LAST!

25th to 31st May 2013

Good evening everyone.  Dainere is not up to writing her Blog this week so she has deputised me to do it.  I am afraid I don't possess her incredible and beautiful gift of writing but I will fill you in on her week.

She was so excited to see her Wests Tigers finally have a win, it was a hard fought one at that too.  Them winning put a huge smile on her face.  The fact that they beat the Cowboys, which is her Nana's team made the win all that more special, as they put her closer to Nana in the footy tipping competition.

Again this week she has not been able to attend school, she is sleeping for roughly 75% of the day, she is having dreadful swallowing issues, incontinence, pressure sores and is terribly off balanced.  She is such a fighter though and despite adversity is still able to smile that gorgeous smile of hers that magically lights up the room.

She had visits from her two wonderful palliative care nurses and one from Kaitlyn her incredible physiotherapist.  What amazing people they are they have assisted Dainere on this journey above and beyond what would be expected.

Her Occupational Therapist, Bronwen is organising a shower chair for her to make life just that little bit easier when showering her.  There are so many useful items available to help those with illness or disability, it is amazing.

We are all so extremely proud of Jarrett's City2Surf Fundraising effort, almost $6000 and to use Dainere's word, this is so splendiferous!  He would not be at that amount if it wasn't for people opening their hearts, spreading the word and being so generous.  Here again is the link to his everyday hero page to keep spreading in the community.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

Speaking of Jarrett, he is not too well at present, he has been diagnosed with shingles, which the doctor has said would have been brought on by stress.  Trying to keep up with the hectic demands of Year 12 as well as having Dainere unwell has taken its toll on him.

It is his 18th Birthday on Tuesday, it will be a day of quiet celebration and one of pride for such an extraordinary son and brother. 

Thank you for the comments you leave for Dainere, she is humbled and grateful to everyone.

COLD WEATHER AND A SPECIAL PRESENTATION AT SCHOOL

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. 

EFFECTS OF MS CONTIN

11th to 17th May 2013

MS Contin is a strong medication, that assists with chronic pain, it can also make you very drowsy which I have experienced this week.  I think that I have slept more than what I have been awake.  It does help the pain a little and I guess it also assists you to relax, so that you can rest. 

I have not been at school this week because I have not been well, it is a combination of the medication and my disease.  I did not get to have physiotherapy either this week which was extremely disappointing, however I know that next week it will be even more beneficial, that is what happens when you miss something one week, you appreciate it more the next time.

This week I said goodbye to my electric wheelchair, as I am having problems with balance and staying upright when sitting, it is no longer beneficial to me.  I have many fond memories of special achievements in that wheelchair.  The School Athletics Carnival last year doing the 100m and 200m in it and then this year doing the Cross Country. 

Despite not been at school, I have tried to do a little research on my English Novel - The Lord of the Flies and I have been working on my Sports Science Assignment, it is difficult though when your eyes just don't want to stay open!

My care nurse Karen came to visit me and check how I was doing, she told me that resting will help me and that is what my body needs to do.  She also filled in another sheet with me, like the one I did before, some things have changed since the last time we did that.

There were two rainbows in Canberra this week, I think that rainbows are the most splendiferous and beautiful creations, they give me hope of better days.

Thank you to everyone who has been donating and passing on Jarrett's City2Surf Fundraising page information.  He is now over $4000 and with eighty five (85) days until the big event there is more time to really make a difference. He has been training with dedication and a passion, this is so important to him.

Here are some facts again if you want to share them with others to encourage them to donate.

•      Many people are unaware that brain cancer is one of the most lethal yet understudied of all cancers.

•      It is the leading cancer killer of children and young adults

•      Worryingly little is known about this disease, other than some devastating statistics

•      No risk factors have been identified and no screening procedures are in place

•      It will take $50 billion over the next 30 to 50 years to perhaps find a cure for brain cancer.

•      As it receives the least amount of funding of all the cancers, it is only through community donations that we can ever hope of finding a cure

    Here is Jarrett's link to his fundraising page again, so you can keep passing it on or just follow how he is doing.  Again many, many thanks for your support. http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

    In footy tipping, Nana is still leading, although last week she got the least correct so there is hope yet for Pop and I.  My poor Tigers are sitting last on the ladder and the incredible Benji Marshall has been benched for this week.  I know that both the Tigers and Benji Marshall will find an inner strength and they will come back fighting, after all they are the Tigers. 

    'When it rains in my life, I look to the sky, for I know that after the rain, a rainbow appears and makes the day so much brighter'.

 

 



A Rainbow that appeared in the sky this week

 

 

 

 

 

 

STARTING NEW PAIN MEDICATION

4th to 10th May 2013

'Never underestimate your potential or your ability.  Believe in yourself, persist and when others give in, keep on going'

As many of you know, competing, enjoying myself  and inspiring others during the Summer Season doing Interclub, throwing Discus, Javelin and Shot put was important to me. 

Well sometimes surprises come your way and I received the hugest and most splendiferous surprise on the weekend when I was awarded the Athletics ACT 2012/13 U16 Female AWD Track and Field Trophy. It was such a huge honour and also very, very humbling.

The AACT Trophy which I was so humbled and honoured to receive

On the weekend in absolutely delightful Autumn weather I was also lucky enough to have a lovely afternoon tea with Tass (my number one salesman of my book) and Gloria  and my family at Adore Tea at Federation Square.  You should have seen the menu, there were so many options.  I ended up choosing to have an old fashioned strawberry milkshake.  Again they are extraordinary people that I have been fortunate enough to meet through my journey.

I only had school for one day this week as my Grade were gong on Camp.  Instead of going on camp, I rested at home and worked on some of my assessments tasks.  However I could not do too much as I have begun a new pain medication, the MS Contin.  It is a brand of a time-released formulation of morphine sulphate and I have to take it every twelve hours. 

I have had nausea and some vomiting, my care team don't think it is from the medication as it is a once off occurrence. If it was from the medicine it would be all the time.  One thing that the medicine does do and that is cause constipation, so I have had to increase my dosage of Osmolax. 

It has reduced my pain slightly but it has also made me extremely drowsy. I am drifting off to sleep regularly and it makes me also feel just a little hazy.

I met my new Occupational Therapist this week, her name is Bronwen.  She is lovely, nothing like Tom who I really miss but she has been very helpful.  I now have a new wheelchair which is much higher on the back and you are also able to tilt the back of it so if I am feeling tired then it can be tilted so I can rest.  I also have cushioned toilet seat, it makes the gap in the toilet smaller, you see I was virtually falling in every time I went, which was a really uncomfortable feeling.

This week I was also able to have physiotherapy with Kaitlyn, she worked on my ultimately tight and sore neck, gently releasing and massaging it to provide some relief.  Then those absolutely marvellous heat packs went on my spine, they are truly magical. 

On Tuesday it was Dad's Birthday, we had a lovely day he had the week off work to spend with me and we played a game of upwords and then watched a movie together.  We spoilt him with a dinner of Pizza and the ladies at work gave him the most scrumptious coffee cake. 

Sunday is Mother's Day, it is a special day to celebrate and thank our mother's for the love and care they have shown us all our lives. Happy Mother's Day to all the extraordinary Mother's who follow my Blog, I hope you have the most splendiferous day and get very spoilt.

I found this poem by an unknown author and I think it is really beautiful.

 

FOR MY VERY SPECIAL MUM

There are times only when a Mother's love
Can understand our tears,
Can soothe our disappointments
And calm all our fears.

There are times when only a Mother's Love
Can share the joy we feel
When something we've dreamed about
Quite suddenly is real.

There are times when only a Mother's faith
Can help on life's way
And inspire in us the confidence
We need from day to day.

For a Mother's heart and a Mother's faith
And a Mother's steadfast love
Were fashioned by the Angels
And sent from God above....I love you so much, Mum.

Thank you so very much to all the people who follow my Blog who have donated to Jarrett's Everyday Hero Fundraising Page.  He has been training extra hard and really wants to help me raise as much awareness and as many funds to try to help researchers find a cure for this hideous disease. 

Again here is the link to his page, please keep passing it on to family, friends, businesses, within your work place and at schools.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

In footy tipping I am now five behind Nana, she is increasing her lead each week.  Perhaps this will not be my year, just like my poor Wests Tigers who are now sitting in last place on the NRL Ladder.

Please know I appreciate all your wonderful comments that you leave on the Blog each week, you are each such an important and special part of my journey.

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.

This is the link to Jarrett's page http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

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