Friday, April 29, 2011


23rd to 29th April 2011

I hope that everyone had a splendiferous Easter break with the long, long weekend this week has been a quiet one which has gone so very quickly.  I was fortunate enough to receive some of my favourite chocolates which are Lindt, they just melt in your mouth, filling it with the most scrumptious taste.  It was a week to relax and enjoy time with the family which was a welcome break after our busy week last week.  Our weather during the break was a mixed bag, with sunshine one day and clouds that threatened to pour raining however only released tiny drops of rain, to icy cold winds and what appeared to be sleet.

Even though most people had time off and relaxed, Jarrett still did his running training, now that is dedication!  On Easter Saturday he did hills, Sunday he went for an hour run, Tuesday was a half hour run, Wednesday was a 40 minute run and then Thursday was training with the squad.  I think he is wonderful, he really loves his running it is so important to him, I don't think there are many people that have the dedication he has. 

Many people spent time in their gardens over the break and we did the same, I planted new plants in my fairy garden this time I put polyanthums in, they are a variety of colours so should look truly beautiful when they bloom, I also found a garden arch at Bunnings that was really cheap so I asked Dad if we could get it, I am going to grow a plant over the top of it, it is at the top of the stairs that lead to my fairy garden. 

We had a lovely visit from Stuart and Meryl they are special people in my life and Stuart shares many of his experiences with me which helps me to continue to remain positive in my journey.  Then the Easter break was over and we only had a few more days of school holidays left.

Dad's Birthday is coming up on 7th May, so Mum, Nalani, Jarrett and I went shopping to Brand Depot and DFO to find some lovely gifts for him.  We also did some Mothers Days shopping for Nana.  I have also been making some special cards for Mum and Dad for both of their special days which come one after the other.

Every day I continue to do my physiotherapy exercises building my muscles hoping to be able to run again in the future.  Today I have physiotherapy with Rhiannon and I think she will be extremely impressed with the work I have been doing. 

Nalani is now jogging, she does exceedingly well when jogging on the spot but when she starts to jog in a straight line she seems to limp a little, I think this will change though as she practises more and become stronger, she goes to the gym at least three times a week for an hour.  She so desperately wants to return to her running, she also enjoys it and finds it helps her with her study load.

Next week is back to school, I also had a telephone call that a visiting oncologist from Sydney wants to see me to discuss my latest MRI results as well as blood results, that appointment is next Thursday, then the week after on the Monday I have to go into hospital for the glycogon stimulation testing as well as a couple of other tests they now want to do to investigate pituitary function.  I have a lung function test on 17th May to check my lung function following chemotherapy as many children who have certain types of chemotherapy have lung problems.  I have this feeling that this Term is going to be a busy but exciting one and also one that will bring new challenges.

I think that constant kindness can accomplish the most wonderful things in the world, like the sun making snow and ice melt, kindness can eliminate hate, mistrust, anger and misunderstanding.  Be kind to all those around you this coming week and the sun will shine on your life always.

Friday, April 22, 2011


16th to 22nd April 2011

School holidays have come around, I am so pleased because I was becoming extremely fatigued at the end of Term, now I can have a break to rest and refresh before another busy Term.  These holidays also have two special occasions in them, Easter and Anzac Day.  Today been Good Friday is a day to think about the sacrifices that Jesus made for us because he loved us, it is a day of sadness and reflection but by the end of the weekend we will celebrate that Jesus rose up to heaven as promised.  Then on Monday it is Anzac Day, that is an important day to remember all the men and women who fought and died for our Country to make it the place that we are so privileged to live in today, we will not forget them.

Last weekend was bitter with a wind that went through to your bones and made them ache, Jarrett was running in the Anzac Relays, luckily it was at lunchtime and even though it was still cold, there were glimpses of the sun that took a little of the chill off the air.  Jarrett's team made a good start with their first runner leading the field in on the first leg, Jarrett took over and he flew, I always compare him to a bolt of lightning, he furthered the lead that the team had and when the third runner took over he also ran well keeping the team ahead, the last runner was Jarrett's coach and he kept the lead, coming over the line to get the team first place.  Jarrett ran the fastest time of the day 11:43:00, he was very happy with that time and it was a personal best from the same race last year by quite a significant amount of time.  We finished off our weekend with a delightful afternoon tea with Chris, Kerri, Noah and Violet, Chris did the Stateline Story about me last year, they are such a lovely family and it was terrific to catch up with them.

I had many appointments this week starting with my MRI on Tuesday, it is so fantastic to be able to have it in Canberra now instead of having to travel to Sydney.  I was a little nervous as I guess anyone who has to MRI's regularly gets.  I am so used to each noise it makes and now know which one is coming next, I lie there still and close my eyes while I am having it, this helps me to feel more calm.  Everything was going well until I had to have the contrast put in, for some reason the vein it went into decided to leak and it was excessively painful however I remained calm even though a huge bubble appeared on my arm and it throbbed with pain and then the vein began to bleed so pressure had to be applied to it for a while before the MRI could continue.  They decided to take some extra images to check on a couple of things they had seen that they wanted to investigate a little further and it was all over. I was so pleased to have Mum and Theodore with me for support, they are always there for me when I need them the most, I have never had this type of difficulty with an MRI before.  By the time we arrived home it was three hours later.  Mum had mentioned that it seemed as if they had not taken any images of my spine and asked about it they had said that the form had only indicated that my brain be done, I am supposed to have it done of the brain and spine every three months.  My arm remained painful for the next few days and it has the most dreadful bruise on it as well as still having the large bubble which is tender to touch and has a very squelchy feeling to it. 

My next appointment was the dentist, I am happy to report that my teeth are in pretty good condition considering the doses of radiation and chemotherapy I had.  The dentist checked my saliva ducts because the radiotherapy can affect these and then that can create problems with maintaining healthy teeth.  Mine, although not quite as good as they should be, they are a little dry, are working well enough to help keep my teeth healthy.  However the chemotherapy has caused my teeth to not be as strong, it caused some of my teeth to wear down and the dentist decided to build two of the worst teeth up to prevent decay.  Later that afternoon I had my appointment with my paediatrician, he is pleased with my determination and courage, he found out that I should of had the MRI of my spine as well, so now I have to go back for that.  There were some preliminary results through which showed that the remaining tumour has remained stable since the last MRI, however there is some concern over an increase in the size of the fourth ventricle but more will be known in the final results.  An enlarged 4th ventricle can cause hydrocephalus, this is when the CSF fluid that goes around the brain and spine is blocked from flowing through.  I have to have a lung function test and also have to see the paediatric cardiologist and have an echo cardiogram.  I have still not grown in height and he was happy with my weight. 

My last appointment was with the optometrist, my eyesight is virtually unchanged however when my nystagmus is worse my vision is not good at all and nothing can be done to help this, again it is something that I have to live with and try to manage the best I can.  One way to manage it at school is only to do work that you have to focus on in short burst, trying to stop before the nystagmus become too severe.  He suggested that I should see an opthamologist to investigate some other issues that he found with my eyes a little more closely. 

Rhiannon had taped my right knee last week at physiotherapy which had been painful and swollen with a new type of tape, it is material and stretches around the joint.  I have had trouble in the past with tape as my skin has become easily irritated but I am so excited to say that this tape did not affect my skin so I was able to keep it on longer and it gave my knee the support it so desperately needs sometimes.  When I took it off I found that my knee was feeling much better for a couple of days, however without the tape on it is starting to become painful and swollen once more.  I have physiotherapy again at the end of next week so hopefully I can have it taped again. 

I have to go into hospital on 9th May for my glycogon stimulation testing and will have to spend more time in hospital for some other tests over the next months also.  At least they are all going to be done here in Canberra so I am close to family and friends. 

Apart from all the appointments we did some Easter shopping, went to our friends Rosemary, Luke and Celina's house for afternoon tea watched a couple of DVD's and went to running training.  I am so tired this week but glad that all my appointments are over for the holidays, next week I can get that well deserved rest that I need before facing Term 2 at School.

In the footy tipping I am excited to let you know that I am leading it now, after trailing behind in the beginning I have caught up and taken the lead, I am on 27 and both Nana and Pop are on 24.  Last week I got seven correct out of the eight games.  I am hoping that my Tigers do well against the Broncos tonight, it has been tough for them so far this season with two of their key players injured but Benji has been splendiferous and that has helped them. 

This week also marks one year since my book launch, with only ten books remaining I am so thrilled that I was able to have the opportunity to share my journey with so many people while also been able to raise awareness and money for Brain Tumours.  Together we have been able to raise almost fifty thousand dollars which will help with future research.  Obviously more still needs to be done and I will continue my efforts as part of my dream to one day help find a cure for this devastating and tragic illness.  I remembered with fondness this week those whose hearts were so generous, they helped me make my book a reality:  Tess, Paul, Gavin, Ben, Carlos and all at Focus Creative, Murdoch Books, Laurence from the Printers Drawers, AXA, Geon, the Starlight Children's Foundation and my incredible family.  To all of you please again accept my heartfelt gratitude and love.

May you all have a joyous and blessed Easter with your families, may Easter bring you good times that are happy from the start, may it bring you moments that make you smile and leave a warm glow in your hearts for the rest of the year.

Saturday, April 16, 2011


9th to 15th April 2011

'May the road rise to meet you. 
May the wind be always at your back.
May the sun shine warm upon your face,
the rain fall soft upon your fields.
Until we meet again,
May God hold you in the palm of his hand.'
(An Irish Blessing)

This week has been a week filled with sorrow and loss following the passing of my extraordinary Great Gran.  She remains in all our hearts and we will carry her with us always knowing what an amazing, strong, talented and loving person she was. 

Her funeral was on Tuesday, we left Canberra to grey skies and tears falling from heaven in the form of rain,  the mood was quiet and sombre as we travelled.  We arrived in Camden just before lunch and met Nana and Pop at the Caravan Park they were staying at, we found comfort in the hugs we gave each other.  It was cloudy even though it was expected to be sunny however when we arrived at the beautiful old church where the funeral was the sun began to shine brightly through and made the stained glass windows inside the church look exquisite.  The service although extremely sad, was also very touching, I learnt even more about my Great Gran and what an incredible life she had experienced.  Nalani, Jarrett and I were asked to read what I had written on my Blog about her the week before, it was one of the most difficult things I think we have all had to do but as we stood in front of her coffin the words came from our hearts.  I learnt that my Great Gran never wanted to be a bother to anyone, she gave generously and lovingly to others and loved her family dearly. Tears of love flowed as the hearse drove away taking Great Gran, we would never see her or hug her again.

After the service we went to the village she had lived at for many years to celebrate her life, we met many relatives including Great Gran's identical twin sister, Great Aunts and Uncles, Cousins and friends of Great Gran's.  I feel so blessed that I have such an amazing Great Gran, I will miss her but she is always with me, watching over me.

The funeral and travelling had taken its toll on me, I was not feeling well so I did not go to school for the rest of the week.  I will be able to start next Term stronger and well rested.  I did however work on a Science assessment task writing up a report about The Effects of Salinity on Plants.  I am so excited because my experiment is working exactly as I expected it would.  The experiment continues during the holidays and we have to complete our discussion by the second week back at school. 

Amidst the sadness of the week, on Sunday we went to the Good Charlotte Concert, they were supported by Short Stack and a band called New Empire.  I have never been to a concert before and it was an incredible experience.  New Empire were good and then of course Short Stack were awesome, they sang my favourite song Princess and were so energetic on the stage.   Then Good Charlotte came on and they actually sounded better live than what they do on their CD's, we were singing, clapping and tapping our feet, they played old and new songs then after they finished and came out for an encore they sang three more songs.  The lights were a flashing rainbow of  psychedelic colours something I have never seen before.  It was a night I will never forget and one that I totally enjoyed.   I had to wear an ear plug in my left ear, because I can hardly hear in my right so the concert was not too loud in that ear but it seemed so much louder in my left so the ear plug helped balance it out. 

I did not go to hospital for the glycogen test on Tuesday because of the funeral, the appointment has to be re-booked probably for the second week back at school.  Next week I have my MRI on Tuesday, the dentist and my paediatrician on Wednesday and then the optometrist on Thursday.  My MRI is again been done in Canberra, I am beginning to feel just a little nervous as I always do prior to having my MRI, I am hoping that everything has remained stable. 

It was school Cross Country on Wednesday for Nalani and Jarrett, the day was freezing cold and very, very windy.  I was rugged up with many layers including gloves, beanie, scarf and I even had a heat pack to keep me warm as I went to watch them run.  Jarrett ran first and he took off like a bolt of lightning, it was not long before he had a massive lead on the rest of the field.  His race was 4km, he easily won in a time of 11:50:00, he had dedicated his race to Great Gran and I think she would have been so proud of him.  Then it was time for Nalani to run, well she could not run, as she is not quite at that stage yet in her rehabilitation, so instead she race walked it.  She also had to do 4km and you won't believe this but she actually won her age group, she was so surprised, her walking pace is really quick, if you remember when we did the women's and girls fun run/walk Mum had to jog to keep up with her walking pace.  Thursday was my Cross Country but unfortunately this year I was not able to participate in it.  I am setting myself a goal however of doing the Athletics ACT Cross Country Championships in June. 

We got to spend some time with Nana and Pop because they came back to Canberra from Camden and then they were flying back home from here on Saturday.  I love spending time with them and wish we could see more of them.

As an arctic wind whistles wildly outside I have thought about life and how important it is that you live it to its fullest, have dreams, don't be afraid to challenge yourself and to show kindness and love to your family and those around you.   

Friday, April 8, 2011


2nd to 8th April 2011

My weekend was one that was extremely busy, on Saturday my Grade at School were taking part in Relay for Life, many of them spent the whole twenty four hours there, doing laps of the AIS, I was unable to do this, I wish I could but I am not well enough to do that at this stage, however I did walk a couple of laps to show my support for such a wonderful cause, the relay for life raises funds for the Cancer Council who support the many different types of Cancer in Australia. 

On Sunday Nalani, Mum and I took part in the Women's and Girls fun run/walk which has been held for the past twenty five years to raise awareness and funds for Ovarian Cancer, the race was over 5km, I knew that I would not be able to walk that long a distance so I competed in my wheelchair.  We started at the back of the field of almost a thousand and made our way gradually up and I came 628th, at one stage Mum had to jog to keep up with Nalani's lightning walking speed.  I am so glad that I could participate in the two such fantastic events that support such important causes.

School this week has been tiring but I think that everyone begins to feel that way towards the end of Term, there are so many assessment pieces due in as well as tests.  I finished off my anti-smoking advertising artwork, I came up with the slogan 'Don't be a fool, smoking is uncool', the audience that we were targeting was young people, so I think that slogan may be one that could work.  In Integrated Studies we have been working on an active citizenship assessment using a case study.  We are continuing to learn about poetry in English, in Science we are continuing with our salinity experiment, I think my hypothesis is correct that if the amount of salt in the water is increased then the growth of the plant decreases as the seeds that I have watered with no salt are the largest then the size gradually decreases with the different amounts of salt I have added to the water to water the other seeds, lastly in Maths we are working on geometry, I enjoy it but not as much as the Unit on Fractions and Decimals. 

I have found that there are many people who have been donating to the Brain Tumour Fund, some of the donations have been coming from people who have been following my Blog, I wish to thank you for your kind and generous donations, I know that together we can make a difference in the future in the lives of children who will be diagnosed with brain tumours and they will not then have to face such a devastating journey as I have. 

Today the skies were a crystal blue and the sun was so radiant, it provided some cheer on what was a day filled with tears and sorrow for we received the terrible news that my Great Gran had passed away early hours of the morning.  Her strength had been incredible, she had lived a life time experiencing events that we will never know and she loved her family dearly.  I hope that she will now travel her rainbow finding peace, happiness and everlasting life.  Thank you for all your thoughts and prayers during the time she was ill, the whole family greatly appreciate them.

'When I look up at the stars each night I will find one, the one that shines most brightly and know that is my Great Gran smiling down upon me from heaven and letting me know that she is happy'

Saturday, April 2, 2011


26th March to 1st April 2011

Cross Country Season has begun and on Saturday morning we went to the first point score event for the Season, Jarrett ran in the 2.1km Junior Point Score event and easily won it, then as a warm down went in the Senior Event which was a 4.2km race.  While Jarrett was achieving some more fantastic results I was using my rollator to do some walking, the surface was definitely Cross Country, a rollator is not as sturdy or supportive on a surface like that and as a result I twisted my right knee but it seemed to be alright.

Sunday was running training for Jarrett from the AIS so again I used my rollator and walked around the perimeter it was much smoother than the Cross Country track I noticed my knee was a little painful but did not think anything of it.  The rest of the weekend was spent working on homework tasks which included planting my broad bean seeds for the salinity project for Science. 

I had a busy yet terrific week at school, in Maths we are now learning about interior and exterior angles in triangles which once you understand it it is rather easy, later in the week we moved on to interior angles of quadrilaterals which as long as you remember they add up to 360 degrees they are also quite easy.  The Salinity Science experiment has continued and I am pleased to report that all my five pots are beginning to sprout, my hypothesis for this project is that if the amount of salinity is increased then the growth height of the plant will decrease, it will be interesting to see if I have made a correct hypothesis.  I finished off a quiz sheet we are working on for the novel Holes and handed in my artwork about a social issue.  My next art assignment is one for an anti-smoking campaign, all Year 8 art Students in the ACT have been asked to enter, I have drafted an idea and will continue to work on it, the winning entry gets to have their artwork displayed on the Canberra Milk Cartons and also wins a gift voucher.  In I.T we are working on our own website design, we are looking at present how other people have designed theirs, noting down the positive and negative points about them. 

During the week my right knee became painful and swollen, which made it difficult at times to put weight on it so I had to rest it, do only a little walking and exercises and then rest and either apply heat or ice to it depending which one relieved it more.  I was so pleased when Friday arrived and it was my physiotherapy appointment.  Rhiannon massaged and then used the ultrasound on it which she got Mum to use while she worked on my other leg, it was such a relief to have the physiotherapy.  My knee remains a little painful and swollen still but I am sure that as the week progresses it will heal.

I received excellent news from the dietitian, she is happy with my height and weight, it is in the healthy weight range and so she told me I am no longer required to see her unless I have any concerns.  I was really delighted to receive this news as it is one less person I have to see. 

My day though on Friday was not all full of good news, I saw the Endocrinologist who actually reminded me of a younger version of my radiotherapy doctor, who was so kind and caring.  He explained to me that from my tumour, where it was located, where I have tumour remaining and my treatment many functions in my body have been affected.  I have multiple pituitary hormone deficiency (MPHD), hypoglycaemia, growth hormone deficiency, adrenocoerticotrophic hormone deficiency and most likely also have cortisol deficiency, thyroid dysfunction and diabetes insipidus.  I have to go into hospital for testing, my first test is on 12th April and is for a whole day, it involves having a cannula inserted and blood taken every twenty minutes, then having a glucagon injection put in my leg and more bloods taken.  This test is called a Glucagon Stimulation test for pituitary function. I have to fast the whole time I am having the test, so I think I will be rather hungry by the end of it.  Following this test I then have to be booked into hospital overnight for another lot of testing but I will tell you more about that when the time comes.  It is most likely that I will be on many tablets and also injections, these will all give me a little more quality in my life but not any extra quantity.  Having a brain tumour certainly changes your life in so many ways, I still have days that I wish this never happened to me but then I am reminded that although it has there are many positive things that have come out of it like my book and raising money for brain tumour research and meeting people I would have never been able to if it did not happen. 

My Great Gran is still with us, she certainly is strong, although she has more fluid building on her lungs and was propped up in a chair and had a fall.  I think she is amazing and just hope that she is not suffering during this time.

'When a shadow comes across I life, I believe if we hold our face to the sunshine our shadows fill fade into the distance and our life will only be filled with warm and light'