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

LAST WEEK OF SCHOOL HOLIDAYS

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.
http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

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."

SCHOOL HOLIDAYS - A TIME TO REST

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.  http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90

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.

END OF TERM 1 AND SOME SPECIAL FUNDRAISING

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 -http://www.fundraise.city2surf.com.au/Jarrett_Anthoney90. 
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. 

WEEK 9 AT SCHOOL

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.