Saturday, February 26, 2011


19th to 25th February 2011

I have had a colossal week this week which began with walking a whole 800m around the AIS track using my rollator, in the last 100m I was quite fatigued and was not sure I was going to achieve my goal but I drew on my inner strength and I did it, nothing is going to stop me now, my new goal is to do 1km, I am hoping by School Cross Country day on 13th April, I will be able to walk 3km and compete in the Cross Country walking this year.

In the afternoon I had a lovely visit with Gloria who is my Starlight Wish Granter, Tess' sister, she updated me on Tess' progress, who is doing well after her back surgery, she is another determined person.
We then played  a game of Upwords, as you know that is my favourite game and I have not played it for a while.

Sunday was an extremely exceptional day, we went to the National Zoo and Aquarium, it was a special event that was organised by Camp Quality, we have never been able to attend one of there events before because I have either been too ill, in hospital or in Sydney for appointments, so I was ultra excited about the prospect of actually been able to go.  The weather could only be described as perfect, the sun was shinning radiantly in the crystal clear blue sky and there was a delightful gentle breeze to take some of the heat out of the day.  I saw so many adorable, entertaining and unusual animals on the day, I loved the Meerkats, Red Pandas, Lemurs and the Sun Bears. 

I even got to pat two dingoes and hold two snakes, one was a large one which went around my neck, it weighed six kilograms and the other one was a colourful tiny one which I was able to hold in my hands.  I found it interesting that they did not feel slimy, they actually felt quite silky and soft and amazingly they were warm because they had been held. 

I was amazed at the size of the giraffes, they were enormous, not to mention rather smelly.  I was saddened by the story of the sun bear Otay who had been rescued from certain cruelty and death.  She had been placed in a small cage called a crush cage and treated poorly and now she displays neurotic behaviour by swaying back and forward almost constantly but because she has been rescued it is hoped in the future this will stop. The day was incredible and I am so grateful that our family was able to go.

In fact I was so inspired by her story that I have decided that animal cruelty is going to be the topic of my art work this Term we have to explore an issue that effects society so I think I will be able to express the need for more people to take action against this type of cruelty to animals because as I see it,  all animals are at the mercy of humans and we need to treat them kindly and with love.

School this week has again been quite challenging as well as intensely fatiguing, it is Week 3 in the Term so the work load has increased.  In English we are continuing to look at poetry learning about metaphors, similes and personification in poetry and continued reading 'Holes'.  In Maths we have worked on addition and subtraction of fractions which I really enjoy doing.  For Science this week we looked at snails and each were given a snail to watch how they move, what they look like under a microscope and general observation.  I learnt that they love to eat chalk dust, can climb over a knife blade without being injured, take a breath every six seconds through their breathing hole which also happens to be their anus as well and I had one on my arm which felt very slimy but once you took it off your skin felt really firm where it had been.  In Christian Living we are learning about the story of Joseph and how he went from being the favoured son, to been thrown in a well by his jealous brothers, sold as a slave, being a trusted slave, then thrown in prison for something he did not do. Our Integrated Studies unit is still about Fair Go for everyone and we now have a project to work on looking at organisations who assist in our Community.

I had two appointments this week, one with my paediatrician who is impressed with the amount of walking I am doing using my rollator.  He told me that school will be tiring, my eyesight will give me problems and my balance will always remain affected on my right side.  He is organising for me to see the Endocrinologist here in Canberra and wants me to have another bone age scan done. 

My second appointment was with the dietitian who is pleased with my weight which has remained steady and she said if it is still the same next time then she will not need to see me anymore unless I have any problems, which was terrific news.

Last night Jarrett ran in the 3000m ACT Championships and he was truly on fire, he ran a determined and focused race, I cheered him on and was so excited to see him come first easily by two hundred metres in an excellent time of 9:20:73.  He was really pleased with his result as he is competing in that event in the Australian Youth Championships in Sydney in a couple of weeks so to have a fantastic run like that is a real confidence booster.  He even let me wear his gold medal around my neck!

I have had some headaches this week which are quite debilitating because they make me feel nauseous as well and today I have woken with what seems like a cold as I am all choked up and have a sore throat and cough. 

Nalani is recovering slowly, she walks without the knee brace at home but still needs the brace for school and shops, she sees the surgeon again on 7th of March and is hoping he will let her begin sport again.

Thank you for suggestions about school and all your support please know that I read all your comments and are inspired to continue with my determination because of you.

'Eliminate every barrier that you can, give yourself every chance to achieve your goals and you will find that anything is possible'

Friday, February 18, 2011


12th to 18th February 2011

'It is important to write from the heart, let your words flow, share dreams and hope because doing this is a beautiful gift to all'.

My weekend was quiet because I had had such a busy and tiring week with school returning for a new year.  I worked on homework, covered books and enjoyed been creative with title pages.  We went to the AIS to see Jarrett run the 1500m Championships, he now runs in the U18's so runs against people who are at least a year older than him.  He ran exceptionally well and in a close race that saw him and another competitor take the lead at different occasions throughout the race, he came second only by milliseconds.  I was so proud of him and he was always happy with the result, you see Jarrett is not the type of person who has to always win, he is just always out there doing his best.

I experienced pain in my lower back over the weekend and it has continued throughout the entire week, it has made it difficult for me to do all my physiotherapy exercises, been unable to bend forward or backward and woken me during the night because it has been catching.  I was so relieved today to be having physiotherapy, Rhiannon found I was extremely tight , she loosened it off, put soothing heat on it and gave me some exercises to do to help it.  I honestly don't know what I would do without her, she is always there to help with all the new issues that arise.

Now to school, it was enjoyable because we are learning some fascinating things and I get to spend time with my friends.  However, I am finding school so exhausting, the days seem so long compared to what I am used to from last year and some of the work although interesting is so very challenging for me.  Something I have found  is that when I am copying from the board or reading from paper my eyes begin to flicker, that is my nystagmus, the longer I have to look the more they flicker, I think they flicker as fast as Jarrett can run.  With the flickering I am also finding that my vision becomes blurry and I am unable to see. As you can imagine this is quite frustrating when much of the work you do at school is either from the board or from printed handouts.

In English we are learning about poetry and reading the novel Holes.  We have looked at shape poetry which I really love, I wrote one about kittens in the shape of a cat and then did one about the sun which took the shape of the sun.  We have moved on and are looking at puzzle poetry by E E Cummings, it is quite unusual and very imaginative.  I have begun to read the novel but find I can't read for too long as my nystagmus causes problems, so Mum reads it to me also. 

Our maths lessons have been about prime numbers, factors and multiples, today and every Friday we have a ten question quiz to see how we are going.  Maths has always been an area that I feel more confident in since having my tumour.

We did a fifty word spelling test as well as a writing test on Tuesday, by the end of them my head felt like a spinning top that would take off and fly any second and I felt like I just wanted to go, lay my head down on a soft pillow and sleep.  I had a headache and my stomach felt churned, my energy was totally depleted it was a tough day.

The Tuesday had taken its toll on me, Wednesday I was still fatigued, my eyes kept closing sitting waiting to go to school and I felt ill.  Mum decided that I needed to recuperate, I slept which really assisted, later in the day Mum worked with me on some school work.  Sometimes you have to listen to your body, telling you when you need to stop and rest.

Today I was jubilant because it was the end of a long, tiring week.  I must say that my favourite class today was Christian Living, we were learning about Joseph and his dream coat and the teacher presented it in such a believable way. 

We went to Stromlo tonight because Jarrett was running at the Stromlo Festival School Challenge, there were so many people there, they had thirty minutes to run and had to run as many laps as they could.  Many people ran or jogged about one lap and then walked, Jarrett ran eight laps which also was eight kilometres in the time, he and only one other person ran that many laps.  It was such a glorious night to be out in the fresh air with just a gentle breeze and splendid views of our city.  Canberra is such a lovely, peaceful and unpoluted city to live in and I feel so priviledged to live here.

Tomorrow while Jarrett is training at the AIS I am going to try to walk 800m with my rollator, I am hoping that my back will not stop me from achieving this goal, as you know I am one determined girl and I don't like having things stop me from achieving the goals I set myself.  Next week I see my paediatrician and the dietitian, I am also looking forward to school again as well as seeing Jarrett run in the 3000m Championships.

Thank you to all the people who are following my Blog and for the heart felt messages you leave, you are all such an important part of my journey.

Friday, February 11, 2011


5th to 11th February 2011

What a huge week it has been for me, I have some wonderful memories to treasure like my own living photo album, I will be able to look back enjoy them, learn from them and continuously add to them throughout the year.  Thank you to all my followers who left such lovely Birthday wishes for me, I appreciate them, you are all so very special.

On Saturday at running training I surprised myself and walked six hundred metres around the AIS track using my rollator, the smile on my face matched the brilliantly shinning sun.  Not this weekend but next weekend I am going to attempt eight hundred metres which is two laps of the track. 

Tuesday was a very special day for me, It was my 13th Birthday, I can't believe that I am a teenager now.  I am hoping that I can be a role model to other teenagers and inspire them to do wonderful work helping others in the community, teenagers don't have to be selfish and not get along with parents, that is something I was told when I was in hospital at the end of last year and I thought it was terrible and I would never be like that.  My Birthday was splendiferous, I received some truly beautiful and thoughtful gifts and cards,  I got lots of wonderful warm hugs and a special visit from Sarah.  At night we celebrated with dinner out and then had a scrumptious profiterole Birthday cake that melted in your mouth. 

The next day was my first day back at school, I have to admit I had very mixed emotions, on one hand I was excited yet one the other I was extremely nervous, I had a stomach full of fluttering butterflies and a headache but once I was there I felt so much more settled.  Middle School have moved to a new Campus, so it is a new beginning for everyone, we all have to get used to the new surroundings and new faces. 

My first week at school has been enjoyable, challenging and a little tiring I actually fell asleep on the lounge I was so exhausted after my second day.   I am going to strive to do my very best though each and every day.  We do not do our normal school timetable for the first week back but take part in what is called The Genesis Program.  We participated in some interesting challenges, like as a group designing a package to try to stop an egg from breaking when you dropped it from a height and then threw it as far as possible.  The only materials we could use were newspaper, masking tape and straws, there were many different ideas, some worked and others did not.  In the dropping challenge our egg just slightly cracked on one side but in the throwing challenge our egg got totally demolished.  As you can imagine it was lots of fun and because it was a sunny day, it did become a little smelly! 

We also did a poster for a Celebrity Loser, my group chose Lindsay Lohan and we had to work out a rehabilitation plan for her over twelve months and consequences if she did not follow our plan.  That activity was also enjoyable.  Part of the program involved making a time capsule that we will open at the end of the year, we had to put important things to us in it, photographs, a piece of string that measured our height and a letter to ourselves, it will be interesting to see what has and hasn't changed in that time.  We finished off the week by writing class rules and consequences which of course really important. 

Each day I have been working on my stretches and riding the exercise bike, I can feel that my muscles are not as tight as they once were which is a really positive thing because I was so tight before it caused me pain.

My FM transmitter is fantastic to use in class, I find that my hearing aid only picks up conversation that is close to me, I think I will need to hear clearly this year because lots of the work in Year 8 is much more complicated than Year 6 or 7. 

I am pleased that the first week back at school is over and that the weekend has just begun, Jarrett is racing in the Athletics ACT Junior Championships in the 1500m on Saturday night, it is supposed to rain tomorrow but he loves running in the rain so that could be an advantage to him. 

I don't have any homework for this weekend, hooray!  Oh, I do have to cover a few books but that is easy.  I will rest up so that I will ready for a full five day week at school next week.  I am wondering how I will cope with it as last year I only went every second day for short hours.

On a disappointing note, I found out this week that I have to have my MRI's in Sydney still because they want to monitor my tumour using the same machine, they said it is more consistent and if anything shows to become aggressive they can act more quickly.  So every three months I have to visit Sydney for my MRI, this will mean time away from school and family.

Please say a special prayer for Tess my Starlight Wish Granter because she has to have major back surgery on 16th February, she is an extraordinary person and I hope the surgery goes well and she will be back on her feet as soon as possible.

Friday, February 4, 2011


29th January 2011 to 4th February 2011

As I am typing this Blog entry we are in the middle of a fierce storm following a hot and humid day, which we have had many of over the past week, a storm provides some relief from the heat that just takes your breath away and zaps you of your energy. 

The place to be during this heat wave if you don't have air conditioning is in shopping centres, we ventured out to DFO for some heat relief and to allow Nalani to do some walking in a shop that was not too busy.  When we left, the heat outside was like being in a desert without water.

Each day even in the heat I work extremely hard on my physiotherapy exercises, ride the exercise bike and do stretches, regaining muscle strength is important and will help me to be able to be more mobile, I can do shorter distances with my rollator but tire if I try to walk long distance, over uneven surfaces or up hills.  I would love to be able to not have to use my wheelchair by the end of the year, I think that will be one of my long term goals this year.  I still have balance issues and always will but there are some things in life that you have to learn to overcome and make the best of.

Tuesday I had to go to Sydney for a lumbar puncture and oncology clinic visit.  We left Canberra at 5.30am, and did not arrive in Sydney until just before 10.00am, there was so much traffic, I have never seen anything like it before.  Once in Sydney, I was admitted on the ward and saw the Oncology Registrar who gave me a thorough examination.  I still have right sided weakness which has remained the same, I have no lower limb reflexes in my right leg but that has also been around for a while now, it seemed to have occurred whilst having my chemotherapy, the nystagmus, which is flickering of the eyes is still present, my MRI results showed what the preliminary one did, remaining tumour, enhancement in the lumbar area and a moderate enlargement of the fourth ventricle.  I remain stable which is a really positive thing, because my type of brain tumour was an extremely aggressive one. 

The best news of all from Sydney is that I am now going to see doctors and specialists in Canberra, my paediatrician will be in charge and I know that I am now in the best hands I could be.  Being looked after in Canberra means that I had to withdraw from the study, I am a little disappointed that my results now are unable to help others but I know that there are so many more productive ways that I can help make a difference to other people's lives.  I do however have to return to Sydney for lumbar punctures and I will have to go in August again.  I guess I have learnt that if you are not happy with what is happening, it is perfectly okay to question, to make requests and to do what you have to to move forward.

Being able to see doctors at home will help me have just a little more normalcy in my life this year, meaning I won't have so much time away from school and family.  Having cancer does change your life, but it is what you do after the experience; being positive, acceptance of what you have been through and understanding that even though you may have changed physically you are the same person on the inside.  Each day I wake wanting to have the most splendiferous day I can, even if I do have challenges to face or pain I don't want to waste a minute of that day.

I had a special visit from Stuart while I was in hospital awaiting my lumbar puncture and that was very special and helped pass the time.  I had my lumbar puncture, when I went in to have my anaesthetic I was smiling when they put the mask on and I kept smiling, Mum said that they had to check to see if I was asleep because I was smiling.  I awoke smiling and felt comfortable, had some food and drink and an hour later I was able to leave. 

Travelling home from Sydney was so hot, it reached forty five degrees outside when we were on the M5 and so many cars were pulled over on the side of the road with their bonnets up, their engines must have overheated sitting in the heavy traffic.  It was such a long tiring day, it took so much out of me and it was hot when we arrived back home late at night.

The next day I awoke with a painful back, I discovered that I had two hole punctures in my back and they were both quite bruised, I have never felt so uncomfortable after a lumbar puncture.  I had to take panadol throughout the day to provide some relief. 

Thursday I went to running training with Jarrett and Nalani, while Jarrett was sweating it out training hard, Nalani, Mum and I went for a walk, Nalani is so pleased to be active again and said she even felt like breaking into a jog but is not allowed to yet.  I long for the day also when I am able to break into a jog around the oval and a longer term goal is to be able to do some training of my own. 

I had pain in my right arm and some tingling, when I returned home I felt strange, next thing I knew my right arm had dropped and was ever so painful, I also felt so sleepy and had a terrible headache.   A couple of hours later the heaviness in my arm disappeared but I felt weak and had pain.  This morning it improved and just felt extremely tight and a little weak.

Today was physiotherapy, working with Rhiannon is special, she encourages me and helps me to set little goals.  She worked on my foot, my legs, my arm and shoulders then I did a walk, it was three metres without the rollator, I did a sit to stand, walked around a step and then back to the seat.  The first time it took me thirty five seconds and the second time it took thirty seconds.  We are going to do that again after another few physiotherapy sessions and see how I am going.  I have to do some foot taps at home where I hold onto the bench and use a phone book, I have to see how many taps I can do with my right foot and then my left food in a minute.  My right foot will be less but I bet with practise it will improve and I will be able to do more the next time I have to do it.

The rain is teaming down outside, the thunder rumbling in the distance and jagged bolts of lightening flashing in the sky.  The rain is so refreshing and it is cooling down the house making life so much more bearable, my heart goes out though to the people of North Queensland, Cyclone Yasi has been so destructive yet Queensland people have such a strong spirit and will recover from this tragedy, they are so inspiring

Next week is a huge week, my 13th Birthday is on Tuesday and then Wednesday is the first day back at school.  'As each new day dawns I look inside my heart, I find the strength, spirit and courage to create the most beautiful sunrise from deep within to fill my entire day with joy.'