Friday, March 25, 2011


19th to 25th March 2011

We had a miserable weekend in Canberra with it raining both Saturday and Sunday so I was unable to do any practise using my rollator at either Stromlo or the AIS where Jarrett was training.  It was the perfect weekend to stay indoors doing homework, watching DVD's or going to the shops.

It was also this weekend that we received the news that Great Gran was becoming worse, more fluid was building on her lungs and they had to give her more oxygen to help her breathe.  My Nana and Pop had to organise to get there as quickly as possible so they could see her.  Great Gran is a very strong person though, perhaps I have inherited my strength genes from her, the doctors did not think she would survive the week, but here we are, it is Friday and she is still hanging in there although she is not very well at all.  It has been a terrible time for the family and we have been praying for her not to be suffering at all during this time.

This week on 23rd March it was exactly two years since I saw my paediatrician, was rushed to Canberra Hospital for an MRI  ,told I had tumours on my brain and rushed to Sydney that evening.  I was operated on the next day in a ten hour operation, told they could not remove all the tumour in my cerebellum and one they would not even attempt to remove because of its location at that stage I did not know whether the tumours were cancerous or not but as you know they were.  That was the day that my life and my families life changed forever, I look back now and know that I was given that journey for a reason, I am still fighting and in those two years I think I have been able to make a huge difference in many people's lives.  Hopefully I may have two more years to be able to continue to reach out helping others and inspire them.  I think that there is no hurdle, no matter how large that you can not jump if you have courage, determination and hope.

School has been very hectic this week, we have had numerous tests which have taken their toll on me, Monday we had a Maths test, there were three parts to it, the first part had four pages.  We had a double lesson to work on it, so that was ninety minutes, after ten minutes my eyes were flickering and I could not focus on the sums in front of me, my head began to throb and my right hand became stiff, painful and extremely weak.  I had a little break and had my hand massaged to try to help the muscles which had all spasmed, it was like my hand was crippled.  I closed my eyes to try to stop the flickering but every time I opened them and looked at the page in front of me they just seemed to flicker all the more frequently.  I tried my hardest but it was just too much.  I felt so strange, my head continued to throb, my eyes just would not stop flickering and my right arm became painful with shooting pains going from my fingers right up the length of my arm.  I was pleased when the lesson was over, although I had not even finished the first part of the test and was dreadfully disappointed because I love Maths but obviously that period of time concentrating is too much for me.  

Mum took me home after the test and in the car on the drive home I was crying because my arm was so painful, once at home, I had a seizure which was very frightening and left me with pain and no use in my right arm.  It remained painful and immobilised for the rest of the day and I also had a headache for that time period too.  When I went to bed, it was still very weak and I did not feel well, I was hoping to wake up with some improvement the next day.

To my relief, there was improvement when I woke, although I was still very weak in my right arm so at school I used my left hand to write, thank goodness I learnt to use my left hand after my surgery, it certainly comes in handy when I am faced with a situation that I am unable to use my right hand.  At school this week apart from the Maths test, we have been learning about cells in Science, continuing work on our novel Holes in English, planning our own website in I.T and began a science project about salinity using broad bean seeds and different concentrates of salt water.  On Thursday I had a Science test, it was also quite difficult although no where near as long as the Maths one, I did struggle and it exhausted me but I finished it. 

Each week I work on my physiotherapy exercises which Rhiannon gives me, although when I am ill or like on Monday when I had the seizure then I am unable to do them which to me is a real setback as far as I am concerned. I have to be patient though and take the good with the bad remaining positive and also not to be too hard on myself if I am unable to achieve some things, some days.

On the weekend Jarrett is racing his first Cross Country race for the season, it is a 2.1km Junior Point Score Race and then he is going to also do the 4.2km Senior Race.  For National Cross Country this year he has to run 6km, that seems like such a long distance to me.  Nalani has been working hard at the gym and is well on track to be able to participate fully in sport in the next three months.

I am doing footy tipping with my Nana and Pop again this year, the first week I did terribly only getting two right while both Nana and Pop got six, the second week I improved a little so I am hoping that this week will be my week to shine.  Luckily my West Tigers won last week and this week is a huge game against the Raiders.

Next week will be another busy one at school with more assessments happening, it is Week 8, this Term is a ten week term so we don't have many more weeks left.  Then on the weekend it is the Relay for Life at the AIS and then on the Sunday is a Woman's and Girls Fun Run and Walk which is helping to raise money for Ovarian Cancer our School is encouraging people to take part in both events, I am going to be doing the Relay for Life on the Saturday and then on Sunday Mum, Nalani and I are doing the fun run and walk, raising awareness about cancer is something that I am just so passionate about, of course these events are not specifically for brain tumours but I think it is just as important. 

'In life we can find hope almost anywhere, it may be shinning out from someone we know, it may be in nature in the form of a rainbow or even deep within our own heart, it is hope that keeps us smiling and living'

Friday, March 18, 2011


12th to 18th March 2011

'Sometimes we worry too much about the future and brood on the past, life if more splendiferous if we focus on the present enjoying every day to its fullest'

Thank you to everyone who has been praying for my Great Gran, she is still with us fighting, she remains in hospital on oxygen but is becoming a little stronger.  This week I received some more devastating news about someone else special in my life, Cate, I have spoken about her before, her son Ash interviewed me for Planet You last year, I was so saddened to hear that she had a heart attack and then two minor strokes within a couple of weeks of each other.  She has pulled through but has been left with some brain damage, she is an extraordinary person as she is always helping others, again I am left questioning why it is those who are so wonderful and caring are the ones chosen for the most difficult journey's.

We returned from Sydney to a long weekend in Canberra, which I spent, resting, finishing recovering from my illness and doing some school assignments.  On Sunday I went to running training and walked around some of the paths around the grounds of the AIS with my rollator. The uneven surface makes it more difficult for me, as sometimes the wheels of the rollator seem to have a mind of their own but I feel so much more confident with walking with my rollator now.  Around the house I do some walking without it, some days I am quite steady but other days my balance is not terrific so I have to use furniture to help me regain my balance.

Tuesday was back to school for a short week, in Science we are learning all about plant and animal cells, it is extremely interesting that a cell is made up of so many different organelles like nucleus, golgi body, ribosomes, mitochondrion and cytoplasm. We have to make a 3D model of either a plant or animal cell, we have to be imaginative when we make it.  In English we are working on a character study from our novel 'Holes' the character I am working on is Zero.  When I have to concentrate excessively at school I find that my eyes with my nystagmus flicker so rapidly I think they are going to pop out of the socket and it makes my vision extremely blurry.  I ended up with a really dreadful throbbing headache and then I had this terrible tingling down my right arm and felt excessively tired so I had to go home.  After resting I recovered but still felt rather drained of energy for the rest of the day.

I had a bone age scan on Wednesday, as well as my flu injection and visit to the doctors for my blood test results.  The bone age scan showed my bone growth is that of a twelve year old, so my growth is falling behind my chronological age.  My blood test results were not the best, I have absolutely no immunity to measles, mumps, rubella, chicken pox, whopping cough, hepatitis A or B or pneumonia.  Normally when you have chemotherapy your immune system is attacked but builds back up again however mine is not, I can not have immunisation because of my treatment.  There are some other blood tests that have been sent to Sydney for further investigation and they are for blood and immune system diseases, results won't be available for them for six weeks.  When I had my flu injection, around the site where it was injected became excessively red, swollen and hot to touch, it lasted for two more days but has now settled not being as large but still a little red and hot to touch.

Today I had physiotherapy which I was ecstatic about because now that I am doing some walking with and without my rollator I am using my calf and hamstring muscles more, but with use they are becoming tight so I was relieved to have them massaged, stretched and released.  I also had some work done on my neck as I have continued to have tingling in my right arm which could be coming from my neck as it has exceptionally tight muscles in it.  Rhiannon put heat on it also and did some traction, it is much looser but I now have a headache from it being released and that is normal.  I did the sit to stand and walk around the stool short walk which I did in 24 seconds and 22 seconds, last time it took me 35 seconds and 30 seconds.  With assistance from Rhiannon I did some very slow high knee steps, it was rather scary as I felt really off balanced like I was going to fall flat on my face,  then I did some bum kick steps, again I felt quite off balanced but not as much as the high knee ones. I was immensely pleased with my physiotherapy session today. 

Nalani has started at the gym, I bet she will be running easily by the end of three months, that will give her time to compete in some of the Cross Country Events which she really loves and either do track in Summer or continue with the Cross Country summer events.

Jarrett is racing next weekend in a Cross Country Junior Point Score event, it is 4.2km, I think he will run a great race, he too loves his Cross Country running.  There is always a younger children's race before the main races I am hoping that this season I may be able to go in one of them, even just walking in it.

I wish everyone a splendiferous week full of many rainbow moments.

Saturday, March 12, 2011


5th to 11th March 2011

Our World is suffering with so many natural disasters firstly in Queensland, then New Zealand and now Japan it is absolutely devastating and unexplainable, I just hope that we are spared any more heartache in our world for the remainder of the year. 

I have spent the last week trying to recover from my upper respiratory infection and middle ear infection, it has taken two lots of antibiotics but it is now almost cleared which is such a relief, I thought it was never going to improve for a while there. 

We had our School Fair on Saturday, it was a lovely Autumn day for it, I went for just a short time because I was just not well enough.  Nalani helped setting up and Jarrett helped with the tidying up afterwards.  I did not even go to running training because I wanted to get better to be able to go to Sydney to see Jarrett run at the Australian Youth Championships, so my walking practise around the AIS with my rollator had to take a back seat for my health.

Nalani had her appointment with the surgeon on Monday and she received some terrific news and that was that she will be fully back into sport within the next three months, she was advised to join the gym, to do some more work so she can get back to her running more quickly.  The news put a huge smile on her face, she has found it so difficult not to be doing her sport, she says it not only helps her to feel healthy physically but also mentally. 

I had to go for blood tests, they took four large vials, blood tests are so simple for me to have, although the blood nurse did mention that they seem to be taking the blood from the same vein all the time.  I have a couple of results back, I have no antibodies to Hepatitis A or Measles, that is from the high doses of chemotherapy, sometimes your body is able to build back these immunities but mine has not been able to.  I see the doctor again this Wednesday to have my flu injection, hopefully the rest of my blood results are back and he will discuss them further with me.

This week at school has been tiring for me, with still recovering from illness.  My Art work is coming together nicely and I am pleased with how it is looking, in Maths we are learning how to convert decimals to fractions and in Integrated Studies we are working on a project about Active Citizenship.  Each day that I have been to school I have been so fatigued that I had to come home and sleep, then again rest also helps your body to heal so it is a good thing however when you have the amount of homework we do in Year 8 it is often difficult to cope.

By Thursday I was given the all clear to go to Sydney to see Jarrett run, I was so elated, I would have been devastated to miss seeing him run.  We left Canberra to drive to Sydney in the pouring rain which followed us until we passed Marulen, we had a stop at Sutton Forest to stretch our legs and for something to eat and drink.  Driving into Sydney the sky was filled with a thick, heavy smoke haze from controlled burning, it stung our eyes and when you breathed in your lungs were filled with the smoke.  However later in the day the winds came up, blowing the smoke away which was a good thing because with Jarrett being an asthmatic it could have really caused him many difficulties. 

To stretch our legs again from the trip we went for a walk around DFO and after we checked into our motel we went for the 1.5km walk to Sydney Olympic Park to have a look at the track.  On returning to the motel I had a long sleep. After a delicious dinner at the bistro with Jarrett's coach we went to Sydney Olympic Park to watch a couple of other members of Jarrett's squad run in their events.  One thing I must mention is that the footpaths in Sydney are atrocious, definitely not made for wheelchairs or even pedestrians they are so uneven, high gutters even at traffic light pedestrian crossings and at times so narrow from tree overgrowth.  The races were exciting they were the Steeple events, I love watching them go over the water jump, both members of the squad did extremely well. 

Friday was Jarrett's big day but not until later in the night, in the morning he had a physiotherapy appointment so we once again tackled the dangerous sidewalks to Sydney Olympic Park, which has marvellous paths for wheelchairs, as the Sydney Olympics were held there they have to have excellent walking paths.  Before his appointment, Jarrett had to do a jog, stretches and some run throughs as part of his pre-race preparation.  He had his appointment which he felt loosened up and ready to fly around the track.  We had a hot chocolate and shared a jumbo chocolate chip cookie then began our walk back to the motel.  Suddenly, the sky turned dark, small spits of refreshing rain turned to larger, heavier drops and then the heavens opened up and it poured down, fortunately, we found shelter under a shop.  Eventually the rain stopped and the sun shone upon us again so we could walk the rest of the way back to the motel. 

After resting we went across to Paddy's markets, the fresh fruit smelt so scrumptious, although the seafood did not have the same appeal to my sense of smell.  There were many stalls with bargains, we picked up a couple.  We returned to rest again, I fell asleep, as even though I am recovering my body still is weak from being ill. 

The time then came to leave for the race, we drove to the track as it would not be appropriate to have Jarrett walk prior to a 3000m race.  The skies had again become dark and there were a few spits of rain however the rain held off until much later in the evening.  We watched Jarrett warm up with his Coach before his race then I gave him a humongous hug to wish him luck and told him to run his best.  My stomach was full of butterflies when he and the other competitors made their way onto the track for the race, I can only imagine that Jarrett's stomach had many more butterflies than mine.  Then it all began with the starters gun going off leaving my ears ringing for ages afterwards.  Jarrett was the second smallest in the race, some of the other boys looked so much older than he did and were huge in stature.  Jarrett paced himself just as his Coach had told him to, he looked strong, his breathing looked fine which was a relief after his severe asthma attack at Cross Country Nationals.  With the final lap to go although Jarrett was not in medal contention he ran focused and strongly making more ground to finish with a 9:15:35 which was a personal best by five seconds this season, he came 11th which he was really thrilled with.  He is the fastest in the ACT for his age group in the 3000m and the 11th fastest in Australia, I think that is incredible.  The best part was, he has gained so much more confidence because his breathing was fine, I think it has been really scary for him since his attack at Cross Country.  He was brave and determined, he was able to overcome adversity and move forward.

It had been a huge day and after a later dinner again with Jarrett's Coach I went to bed thrilled for Jarrett and extremely tired, I slept like a log not even hearing a thunder storm that hit Sydney in the early hours of the morning.

While we were in Sydney we heard some very upsetting news about my Great Grandmother, she has had a heart attack, she is in hospital, she has fluid on her lungs and a blood clot in her artery, the doctors are trying to drain the fluid and dissolve the clot.  I have been praying that God will look after her and let her stay with us.  Could I please ask you to pray for her and that her doctors will be successful in pulling her through.

I also know that some of my followers have been having health issues themselves and I have also been saying prayers for them and wishing them speedy recoveries.

In line with Jarrett's running I have this quote 'Every great athlete seeks a personal best, they seek new challenges, stretch their capabilities and learn from their mistakes, if they believe in themselves, show persistence, courage and have faith in their ability they will always surge ahead not only in their sport but also in life'  I think we can in our lives all think like athletes, learning from our mistakes, showing persistence and courage and seeking to do our personal best always.

Friday, March 4, 2011


26th February to 4th March 2011

My dreadful cold continued over the weekend, I felt so ill and energy depleted, I thought going to running training on Sunday in the fresh air would be beneficial. The weather was so pleasant and it certainly did feel as though I was more energised so I decided to do some walking with my rollator, I felt rather comfortable as a finished the first lap and decided I would go for a second, that was probably not the best idea because as I neared the final two hundred metres of the second lap, my chest felt tight, asthma like, I pushed on to finish but them rested, perhaps I had over done it. That is twice now that I have completed eight hundred metres, I am now hoping to push forward and eventually achieve those 3km in my School Cross Country.

I tried to do homework but found myself just wanting to sleep, so that is exactly what I did and when I woke I felt much better but when I started on my homework again I began to feel ill again.  I get frustrated now by illness, I feel like I don't have time to be ill.

My cold seemed to get worse on Sunday night, I did not sleep well as I was kept awake coughing, it was a dry, annoying cough that also made my throat and chest hurt.  First thing Monday morning Mum made a doctors appointment for me.  He found that I had an upper respiratory infection as well as a middle ear infection, I was put on antibiotics and told to stay away from school for the week. My immunity is low so whilst I am ill I am more prone to picking up any other illness that may be going around.  He also wants me to have a number of blood tests to check out a few other things like whopping cough and pneumonia. 

So this week I have spent sleeping, taking my medication, taking panadol for pain, headaches and fever and coughing.  My cough has now become loser and seems to hurt my chest more, it is at its worst early in the morning and at night, so I have had many restless nights sleep unfortunately.  I was given a repeat on my antibiotic which I will need to take. 

I found with my middle ear infection that my already affected balance became so much worse, just standing on the spot I thought I was going to tip over just like a bowling pin.  I have attempted to do some school work but really just can't concentrate.  Oh dear, I sound like I am feeling sorry for myself, but I just want to feel better and it seems to be taking a long time.

On Monday I will go for my blood tests, back to school and hopefully each day I will see some improvement.  Next weekend Jarrett is running in the Australian Youth Championships in the 3000m, I love watching him run and cheering him on, I am so proud of him and he really inspires me with his dedication and marvellous sportsmanship so I had better be felling well.

Nalani goes back to her surgeon on Monday also, she now has her brace off all the time and is almost walking normally.  She is riding the exercise bike forwards instead of backwards and the physiotherapist is extremely pleased with her progress.  She is hoping that the surgeon will now allow her to gradually return to sport.  It looks like she will be walking or jogging the Cross Country rather than running also this year.

I received some upsetting news this week that a friend of mine who was kind and caring when I was bullied at my old school was diagnosed with Type 1 diabetes.  It has made me question again why all the most extraordinary people seem to have been dealt difficult journey's in life while those who are cruel and hurtful go through life getting everything they want.

In some exciting news, money that was raised from a Golf Day has been sent to the Sydney Children's Hospital Foundation Brain Tumour Fund, it means so much to me to have been part of many substantial donations in the hope of further research to one day find a cure for children who have been diagnosed with brain tumours.

Autumn is here now, I love how all the trees leaves change colour, fall to the ground, swirling and twirling as if to a sympony of music, it is truly a magical time. I need to rest now but thank you to everyone who continues to follow my Blog and those new to following, I hope that I can inspire you all in some small way.