DAINERE'S JOURNEY

A BRONZE MEDAL, BACK TO SCHOOL AND MY 14TH BIRTHDAY

2012-02-11T17:54:00.000+11:00

4th to 10th February 2012

Some extraordinary moments this week beginning with achieving a personal best in shot put at the ACT Junior Championships as well as a bronze medal, my first ever Championship medal. It was on my final throw that I threw a 2.47m to beat my previous personal best by 7cm. A special highlight of my throw was that Louise Ellery, the paralympic Gold Medalist was there to see me do it and she was cheering me on, how wonderful it was to hear her words of encouragement, because she is an inspiring athlete.

The next moment was going back to school, entering Year 9, Senior School, a new uniform and different teachers and classes. On Tuesday I had an orientation day, we were given our stationery, went to our PC (pastoral care) class where we learnt what the rules and expectations, then we went to our first day classes to meet our teachers as well as having a a tour of the Senior Campus. Wednesday was my first day back and although it was extremely tiring I was so excited. In English we are reading the novel 'Tomorrow When the War Began' by John Marsden, our topic is Choices and Sacrifices and we do work based on this. I have Sport Science which I have to say is my favourite class so far, the course material is so interesting and we are also going to do some work on the Olympics which is so fantastic with the Olympics being in London this year. In Maths we are working on indices, which I have found enjoyable and easy so far. We have had homework already for both English and Maths, imagine having homework on your first week back! My FM transmitter is working well and despite some moments when the teachers voices break up a little I can hear virtually all of what the teachers are saying, oh except when they accidentally muted it, which is just a minor teething problem.

The most splendiferous moment this week was my 14th Birthday, on 8th February, although I had to spend the day at school, I received many beautiful good wishes and lovely gifts from family and special friends. The most precious gift to me though is being with my family, I am so grateful to have them and to share yet another Birthday with them. We had a dinner of my choice and I chose to have a barbeque dinner, with sausages, steak and salads, then to finish it off we had a scrumptious caramel mud cake that was so moist and had drizzles of chocolate on top and just to make it more delicious we had it with cream. Of course Mum, Dad, Nalani and Jarrett all sang Happy Birthday while the candles burnt and dripped some purple wax on the cake and then I got to make a wish, I won't tell you what it was because then it won't come true.

I had physiotherapy this week also, Kaitlyn worked on my foot which is almost healed now, as well as my legs and my back. I got to have two heat packs on my back and it felt so wonderfully relieving. I also was given a new exercise for my foot, as it becomes stronger I am able to do different exercises to help it. I do my physiotherapy exercises every day, if you don't work on them then you are not going to help yourself heal, sometimes it may seem difficult but it is important.

Today I am competing in the ACT Junior Championships in the javelin and discus, I hope that I am able to achieve more personal bests, but with school returning I am a little fatigued but I will be determined to do my best.

Next week will be a full week at school, I am hoping that it will not be too tiring and that I will be able to continue to cope with the workload. I think if you have a positive attitude then you find the strength to deal with any difficult situation that crosses your path.

Wishing you a splendiferous week, may the sun shine on your life and may you see many rainbows this week.

A BUSY WET WEEK

2012-02-03T14:13:00.002+11:00

28th January to 3rd February 2012

As rain inundates much of Eastern Australia and temperatures have plummeted here in Canberra along with the rain that has made everything so lush and green, but soggy, I have had a busy week full of many appointments.

As school draws ever so close, I had a meeting about School and classes this year, I know that Year 9 is so much more demanding academically than what I was used to in Years 6-8 which is Middle School and I am hoping that I will be able to cope with the new demands of the more difficult work as well as a whole new timetable. In Year 9 you have a Week A and a Week B so your classes are not the same every single week. There has also been a change from a seven period day to a five period day so the lessons are all longer than what I am used to. Next Tuesday is an orientation morning where I will find out more information about the timetable as well as who my teachers are. It is a very exciting but also nervous time for me.

I had physiotherapy this week again and Kaitlyn loosened my tight and sore muscles in my legs and foot as well as the left side of my pelvis. My neck had been giving me some grief so she also used heat to give that just a little relief. My foot is now healing so I am going to throw in the ACT Junior Championships with my foot heavily taped to provide support for it. I have to go back next week again to have my neck worked on a little more intensely.

My MRI of my spine was also done this week, there were no problems with the machine this time so I got in quickly. Part way through the scans a doctor came in an inserted a cannula into my left hand, he tried my right arm at the elbow bend but with no success you see my vein is extremely scared as it has been used for so many tests that it just can not be used any more. So the doctor told me to let anyone taking blood or inserting medication that that vein is not to be used. My veins are only tiny and I had to have a heat pack put on my hand to make the veins come up more and then it was much easier and less painful for the insertion of the cannula. More scans were taken after the contrast was injected and then it was all over. It went for an hour, which is longer than usual for one of the spine because they took extra scans. My Brain MRI disk and report as well as the one from my spine has been taken to Sydney for my team there to review.

Today I have my dietitian appointment, it has been ages since I got to see her because my last appointment was cancelled by them. She was going to have me do a special elimination diet over the Christmas break but I missed out on that, so maybe she will look at doing that now.

I have still been experiencing some terrible headaches but they are certainly not as constant as they were when I was on the Growth Hormones. I still remain off the Growth Hormones until the doctors in Sydney have reviewed my MRI's. Then a decision will be made as to whether I will take them at a lower dose, slowly increasing them to the high dose I was on or for me to be taken off them completely.

With the cooler, wet weather I have played board games this week, I really enjoy playing Pay Day and Upwords they are fun games which can last quite a while and help the time go by on miserable days.

I will be doing footy tipping again this year with Nana and Pop, I am hoping that this year will be the year of the Tigers, they were so close last year but did not quite make it.

At ACT Junior Championships, Jarrett is running in the 1500m, it is his first race back after injury, he is hoping he will be able to run a personal best and Nalani is throwing shot put with me. The weather is definitely not very favourable for personal bests but we will have to wait and see how we go.

Each and every day I am so grateful to open my eyes and greet the day, there are so many possibilities and opportunities to embrace. I wish you all a splendiferous week and hope that it is filled with many rainbow moments.

MY MRI

2012-01-27T16:09:00.000+11:00

20th to 27th January 2012

Happy Australia Day to everyone. Did you know that from the earliest white settlement at the end of the 18th century, Australians have striven to celebrate a national day, and in so doing, define what it means to be Australian. January 26 has traditionally marked the landing of Captain Arthur Phillip at Port Jackson in present-day Sydney, thereby claiming Australia for the British Empire. Early settlers, perhaps naturally, marked the anniversary. Australia Day has evolved from a small commemorative New South Wales holiday into a major national celebration. It is a day that expresses the Nations diversity which has become such an important part of the Australian national character. Australia Day today celebrates diversity and tolerance in Australian society. Australia Day has become a community day, there are still all the formal ceremonies throughout the Country like flag raising, citizenship ceremonies and the presentation of important community awards like the Australian and Young Australian of the year but now January 26th has become much more for the average Australian because celebrations have a strong festive aspect and encourage families to celebrate together with other members of the community.

To be an Australian means that we have a strong sense of giving others a 'fair go', we are adventurous, we will all pitch in and help others in times of need, mateship and we have a good sense of humour. We live in a beautiful environment with wide open spaces, pristine waters and crystal clear blue skies. We also have freedom in our Country to choose our own Governments, make our own choices and for everyone to be educated. The achievements of those Australians who we honour on Australia Day should always inspire us and demonstrate that anything is possible. How lucky and proud we should all be to be Australians. Unfortunately I did not go to any of the festivities as there were too many crowds and too much noise which are difficult for me but I thought about how important the day was and how as a proud Australian I hope that I can continue to show courage, wisdom and hope to inspire others.

I had my MRI on my brain this week, the night before I had a restless night sleep as even though I have experienced so many MRI's throughout my journey I get a little nervous as to the outcome everytime I have one. This one was different too because I have been having all those dreadful headaches after commencing my growth hormone, Genotrophin, injections. It was an early start that morning so it did not give me too much time to contemplate much. We waited for quite a while and then were told that there were some technical difficulties with the machinery but it would not be too much longer. The clock seemed to be going backwards as I sat waiting for my scan, but finally I was taken in.

Having just a scan of the brain is much shorter than having the brain and spine done which last time took approximately and hour and a half. I was all set up for the scan with the ear plugs going in last and then it began. I think I now know every single scan noise pattern off by heart. Just over half way through the scan the doctor came in and inserted a butterfly to inject the contrast through, however my veins decided not to co-operate. She had two attempts in the inner side of my elbow with no success, then she tried the top of my hand, the first attempt was no good, however the second one went in beautifully. The whole time she was attempting to insert the butterfly I remained calm, there is no use in getting tense of upset it would make it more difficult than it already was. The contrast went in which is called, gadolin. These MRI contrast agents are a group of contrast media used to improve the visibility of internal body structures in magnetic resonance imaging (MRI). The most commonly used compounds for contrast enhancement are gadolinium-based. MRI contrast agents alter the relaxation times of tissues and body cavities where they are present. Depending on the image weighting, this can give a higher or lower signal. It is quite a sticky liquid and I could feel it going up my arm as it was injected. Following the injection it was time for more scans, as always I had Theodore and Mum with me.

Then after forty five minutes it was over, time to take out the earplugs which actually begin to make your ears itch as they are made of a foam type of material. You do not get the results immediately, the scans have to be looked at by doctors and then compared with other scans and as I have had so many they compare them with a few. The doctors here in Canberra then have to talk to the doctors in Sydney for their opinion also so hopefully I will have some results next week. I do have an MRI on my spine on 1st of February so they may also wait until those ones are done until we are told the final results.

I have still been experiencing some headaches, some are only minor and dissapear quite quickly with pain killers but I have still had some that are just dreadful because they start at my temples and go around to the back of my head and they just thump, they make me feel so nauseous and tired. Eventually the pain killers assist but it takes a while.

This week was also physiotherapy for me again, which is always terrific, I have physiotherapy every fortnight because my muscles tighten easily and also because my foot is still healing after injuring it. Kaitlyn worked on my foot and found that it was extremely tight underneath, which she massaged and released, then she worked on the top which is still painful in certain positions so it is not fully healed as yet. She had to work on my calves as they were tight also and then she worked on my upper back. My right side always seems to pull up higher than my left and so she tried a neck release to try to help it. She wants to see me again next week to see if it helped any. It was actually quite tender afterwards and now seems to have gone back to been pulled up.

I had my hair trimed at the hairdressers, I also had one of my wigs trimmed because it was too long in the fringe, everyone always likes my wigs and some people even think it is my real hair. The wig I had trimmed is a heat friendly one so it can be straightened or curled, again it is one that I bought from PlaywithHair, their website is http://www.playwithhair.com/ .

Our weather has been pleasant, not too hot and at night a gentle cooling breeze comes up and whispers through the blinds. The poor people in Western Australia where it has been continually hot and those in Queensland and New South Wales who have been inundated with rain causing floods.

Next week I have many appointments, a meeting with school, physiotherapy, my spine MRI and the dietitian. Something special next week is ACT Junior Championships, I am hoping my foot will be healed enough for me to throw shot put.

'Remember that life is full of many surprises, but you've got to get into it to get something out of it'

AN EARLER MRI

2012-01-20T16:57:00.000+11:00

14th to 20th January 2012

With the Summer radiant sun shinning ever so brightly in the sky outside this week, I received the news that I have an earlier date for my MRI on my brain, it is now on Tuesday 24th of January, it is very early in the morning at 8.15am, so I will have to be up and about at the crack of dawn. My Endocrinologist kept pushing for the date to be brought forward as he is very concerned by the headaches I have been having since beginning my Genotrophin, the growth hormone. Since been off them, my headaches are not constant but I am still experiencing some and many of them are not very pleasant. At times I have felt like I am being stabbed in my head and it makes me cry, but at least they are not constant now, so that is a positive. My spine MRI has now been moved to 1st of February when my brain one orginally was and I now don't have to have one on my Birthday.

This week I have taken it easy and spent time resting and enjoying the school holidays with my family. We have been playing board games and watching some movies that we got for Christmas. With the weather being quite hot again doing those type of activities are probably the best to do. Nalani, Jarrett, Mum and I did go and have a game of French Cricket the other day, we had a splendiferous time, it is something that is not too difficult for me to do. As my foot is still painful to put weight on, I played from my wheelchair, I could not do any diving catches like Jarrett but I did take a few catches, as well as getting to bowl and bat.

Yesterday was a very special celebration for Nalani, it was her 18th Birthday, she is a wonderful sister and I was so excited to be celebrating such a wonderful occassion with her. She did not want a big party, she just wanted to do something special with us, so we took her out to dinner along with Uncle James and Aunty Kate to a place called Bella Vista. The food was scrumptious and they made her a special cake, it was a croquembouche or croque-en-bouche, this is a French pastry the name is a French one and it means 'crunch in the mouth', it was invented by Antonin Carême and they made it on MasterChef one year. It is a high cone assembled of choux pastry filled with a custard cream it was bound with caramel and decorated with threads of caramel. They brought it out with a sparkler alight at the top of it, it was incredible and the best part was that it tasted as good as it looked. The pastry was so soft and light and the creamy custard filled made your tastebuds tingle with delight, then you got a crunch of the sweet caramel.

Jarrett is back at running training again, he is so pleased that his injury has now finally healed properly, he was so frustrated when he was not able to do his full training schedule. Now he can build back up ready to compete at the ACT Junior Championships and the Australian Youth Championships which he has already made qualifying times for.

I have found a bike that someone with a disability, who has balance problems or is elderly can ride, you see something that I used to love to do and missed so dreadfully following my diagnosis was riding a bike. You can get a tricycle, one of the brands is a Gomier tricycle, these tricycles have a low step-through height which makes it easy to mount and dismount. They have an adjustable head stem which gives you a more upright riding position and this also lowers strain on your lower back. The seat has extra padding is is wider than a normal bike seat so this cushions your ride. It has a strong, durable steel frame, lightweight aluminium rims, it has six speed shimono gears and non slip pedals which help grip. It has a large basket on the back so you can carry things in it even some shopping and it has great stability so this is what makes it so ideal for people with a disabilty or even elderly people who may be unsure of riding a normal push bike. I am so excited that have discovered this and can share it with you because it means that there is a way to ride a bike, when you may think you can't.

They say laughter is the best medicine so I must share a funny story with you now, when we were at running training the other day, I was sitting under a tree enjoying the fresh air when I felt something hit my head, it actually hit quite hard and hurt a little, I thought it must have been a little nut but I could not locate one anywhere on the ground near me. Suddenly Mum gasped and told me that a bird had left a little message on my head scarf. I took my scarf off in horror, then wondered how it could have felt so hard and hurt. Then I began laughing, what an unusual thing to happen, Mum told me it is actually lucky to have a bird do that. We then thought about it and we decided it was lucky because if I had of been wearing one of my wigs it would have been much more unpleasant and messier to clean up than on my head scarf!

Next week is a busy one for me, I have physiotherapy on Monday which I am so relieved about, my foot is still quite painful, I also have been experiencing terrible back pain, so hopefully Kaitlyn will be able to assist me. Tuesday of course is now my MRI, which I must admit I am a little nervous about because of the headaches I have been having. I also have to have a bone age scan done that day while I am at the hospital as my Endocrinologist ordered it to be. On Wednesday I have a hair appointment, I don't have much hair to cut but it is always nice just to have what I do have trimmed a little, I am also getting the fringe on one of my wigs trimmed as it is a little long and pokes me in the eyes. It is actually quite fun having a wig trimmed as you get to wear it and it almost is like having real hair trimmed.

I am still looking for some unique and creative ways of raising funds and awareness this year for brain tumours so please keep your ideas coming, I appreciate the ones that people have already given me. Remember that brain tumours are now the number one cause of death from cancer in children, that is so devastating and that is why I want to raise more awareness and funds.

Enjoy the splendiferous Summer weather and remember to make the most of every day, start it with a smile and open your heart to those in need.

TAKEN OFF GROWTH HORMONES

2012-01-13T17:57:00.002+11:00

7th to 13th January 2012

'There are times in our lives when life isn't all we want it to be but we should see each new morning as an opening door to a better day than the one before.'

After suffering from dreadful constant headaches that made my head feel like it was actually going to explode and feeling so ill last week, we were able to speak to my Endocrinologist this week about my headaches, pain and nausea since taking the growth hormone injections, Genotrophin. He told me to stop taking them immediately, he was really concerned about me and he tried to organise an MRI of my brain as soon as possible, the earliest we can get is the 1st of February which was when I was scheduled for one anyway, unless a cancellation comes up earlier or if I have to be rushed to hospital because the headaches become worse including blurring of vision, dizziness or vomiting. You see a complication of taking growth hormones when you have a brain tumour is that it can cause an existing tumour to become aggressive or it can actually cause the return of tumours very quickly. I am hoping that this is not the case, of course my residual inoperable tumour has enlarged slightly in the last MRI's but has remained stable so hopefully it will remain that way.

I also have to have another bone age scan which will be done at the same time as the MRI on 1st of February and then I have to have another MRI which will be on my spine on the 8th of February which is not only my first day back at school for this year but also my Birthday!

I had physiotherapy also this week and although my x-ray did not show a fracture, the physiotherapist feels that it is extremely likely that it could be a stress fracture which would not show in an x-ray but would show in an MRI bone scan. Also the actual x-ray that they did was not done standing and that would also show a fracture more clearly. She would have put a boot on my foot to help it, however my foot is too small to fit one, so I have a tubular bandage on it at present to protect it. It is so frustrating to have a foot injury yet again as it is painful to put pressure on so I have to keep off it as much as possible, it is also still swelling sometimes so having a shoe on hurts. My leg muscles are also rather tight so that is causing me some problems and they needed to be loosened off. I have physiotherapy again in two weeks time and I am hoping that Kaitlyn will be able to help me to recover in time to throw in the Athletics ACT Junior Championships on 3rd of February.

Although my headaches have improved a little since been off the growth hormone, having felt so ill really knocked me around so we have not been doing that much this week. I am relieved though that the pain in my hips and legs that was waking me during the night has virtually disappeared now, so I am sleeping much more soundly and that makes such a difference to how you feel the next day.

Yesterday we did go to Interclub, Nalani competed in the discus and shot put, I could not compete again because of my foot and Jarrett is not back to track running yet because of his foot injury from last year, the track, even though it is synthetic, it is quite firm so he does not want to risk re-injury. There was a mile championship on, which Jarrett would have competed in if he was able to run on track. It was a terrific race, because Martin Dent was running in it, he won the race in 4:24 he is a really terrific distance runner, he is hoping to make it into the Australian team at the Olympics.

Today I got my new uniform for School, because I will be in Year 9 and that is Senior School, we have a different uniform. It is a taupe, pleated skirt, white blouse with navy piping on the pocket and a navy tie, it looks really smart although the sizes are all ladies so it is a little large on me, I am quite a bit shorter and smaller than most girls my age.

I am still trying to think of a new and unique fund raising idea for this year, if any of my wonderful followers have any splendiferous ideas, I would really love to hear them. If we can raise more funds and awareness this year then we may get just one tiny step closer to finding a less devastating treatment or a cure for brain tumours. Have a blessed week filled with many special rainbow moments.

WELCOME 2012

2012-01-06T16:52:00.000+11:00

1st to 6th January 2012

Happy New Year!
It is so hard to believe that another year has passed by and that it is now 2012, we have a Calendar at home and it has a little inspirational poem for New Year on it, it does not say who wrote it, I would like to share it with you all.

Happiness depends upon your outlook on life
Attitude is just as important as ability
Passion, find yours this year
Positive thoughts make everything easier
You are unique with special gifts, use them

New beginnings with a New Year
Enthusiasm, a true secret of success
Wishes, may they turn into goals

Years go by quickly, enjoy them
Energy, may you have lots of it
Appreciation of life, don't take it for granted
Relax take the time to relax this coming year.

Our 2012 started off with sweltering, humid, blistering heat, you could not do anything outdoors and if you don't have any cooling then the temperature inside the house is just as hot as outdoors. It was good weather to read a book, watch a movie and drink lots of refreshing glasses of cold water with ice cubes in it.

This week I have had quite a few appointments including physiotherapy, bone mineral density and an x-ray of my right foot. At physiotherapy Kaitlyn had a look at my foot and decided that I should go for an x-ray to investigate whether I had a lisfranc fracture. She also did a pelvis release to try to loosen up that area as I am all pulled up on my right side. She gave me a new exercise to do which a Pilates one to strengthen my lower stomach muscles, you lie on the bed with your knees up and you flap your arms up an down on hundred times. I have physiotherapy again next week to check on my foot which will be terrific, hopefully Kaitlyn can make it feel better. I went for my x-ray which I am relieved to say shows that I do not have a fracture, so my injury this time appears to be a severe sprain. I was also told that this x-ray showed that I had poor bone density and often people with this are not only prone to fracture but also to sprains.

I had to have a bone mineral density test done, I have to have this because of the treatment that I have had, this test measures the absolute amount of bone it generally correlates with bone strength and its ability to bear weight. Determining a person's Bone Mineral Density helps a doctor decide if a person is at increased risk for osteoporosis-related fracture. Dual energy X-ray absorptiometry, or DEXA, is the most common method to measure a patient's Bone Mineral Density. DEXA is relatively easy to perform, the scanner is a machine that produces two X-ray beams, each with different energy levels. One beam is high energy while the other is low energy. The amount of X-rays that pass through the bone is measured for each beam. This will vary depending on the thickness of the bone. Based on the difference between the two beams, the bone density can be measured. Scanning generally takes 10 to 20 minutes to complete and is painless. The patient needs to be able to lie still on the table during the testing. Bone density measurements are reported as a value in g/cm2 and as a T-score or Z-score, which describes your bone density measurement in relation to other people in a similar group – known as the ‘reference population’. The reference population for the T-score is young adults of the same sex as the patient, while the reference population for the Z-score is a group of the same age and sex as the person being tested. Osteoporosis is diagnosed if your Z-score is -2.5 or less. My last bone density test showed that I had osteopenia, osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. My results showed that my femoral next BMD was 0.4640g/cm2 and a Z-score of -3.77 and my lumbar spine had a BMD of 0.5768g/cm2 and a Z-score of -3.10. I have to wait for my results to be reviewed by Sydney before I know exactly what is happening with my bone density.

My growth hormone injections which are Genotrophin mini quick unfortunately are causing me lots of grief. I have been experiencing terrible pain in my legs throughout the night and it wakes me, so my sleep is disturbed as I have my injection at bedtime. I have also been experiencing constant dreadful, throbbing headaches that start at my temples and go all the way around to the back on my skull, at times they are so horrible that they make me cry. Also when I have the injection which ever leg I have it in (you have to use alternate legs) that leg becomes really heavy. I have not noticed any growth as yet, apparently the first place people often start to grow is in their feet. I was told that the side effects may not be pleasant and the doctor has been informed of the effects I am experiencing, he is away at present but I am hoping he will be able to do something to stop them.

I was unable to compete at Interclub this week because of my foot which is still quite painful and I was told to rest it, I am hoping that I will be able to compete next week, if not I am sure it will be healed in time for me to compete at the ACT Junior Championships which are over two weeks the 3rd and 10th of February. I did not feel alone not competing as Jarrett is still not able to run on the hard track surface just yet, although he is back at training again. Nalani competed in javelin and shot put, she has gone up an age group so she has to throw a heavier weight implement, the javelin is now 600g and the shot put is 4kg. So she threw personal bests because it was her first time throwing with the new weights.

We have had a cool change come through and the weather is so much better than what it was earlier in the week, hopefully we will not have to experience those high temperatures again for a while.

This weekend Nalani is doing her Road Ready Course, in the ACT this is how someone is able to obtain a learner drivers licence, they do that course for two days and also do a thrity five question test. I am sure that Nalani will pass, she will then start learning to drive!

Wishing you all a splendiferous week, I hope that it is filled with much happiness and many rainbows.

2011 COMES TO AN END

2011-12-31T12:04:00.000+11:00

24th to 31st December 2011

I hope that everyone had a splendiferous Christmas and that it was filled with many special memories that your will treasure throughout the coming year.

My Christmas was an extraordinary one because I spent it in Queensland with my Nana and Pop, it is the very first time ever that we have been away from Canberra for Christmas. We thought we were not going to get there though because on the day we left Canberra we arrived at the airport to be informed that our flight had been delayed due to a mechanical problem, so we waited and waited and finally almost two hours after our flight was orginally supposed to leave, we were on our way. It was so exciting to be staying with Nana and Pop at their house and seeing their dog Chifley, who was so cute and friendly. On Christmas Eve we gathered around the television singing Christmas Carols, I think some of us were a little off key but it sounded triumphant, we then shared some funny memories of past Christmases which made us all laugh. Then on Christmas morning we all sat in the lounge around the glistering Christmas Tree while Pop enjoyed handing out the Christmas gifts.

Santa had visited us the week before, he even sent a letter all the way from the North Pole telling us that he makes special trips at this time of year to children who are going away for Christmas and would not be able to carry their gifts back with them, it is a tricky thing to do when you are flying. This year on Christmas Day as I sat with a smile on my face enjoying seeing the gifts that the rest of the family and I received I thought how very lucky I was to be sharing that moment, at that time with my family. So much has happened in the past couple of years and I am just so grateful for every day that I have on this earth, I think that many people take life for granted and waste it by not making the most of it or doing things that really are not right or hurt other people. We should always wake up each day wanting to make it a special day, one where we smile at others, appreciate those people around us, try to help out others in any way and spread happiness and love.

The weather in Queensland was almost perfect, the sun shone radiantly in a crystal clear, sparkling blue sky, a gentle breeze came up to cool the air when it was just a little too warm and light, wispy white clouds floated luxuriously about in the blue sky. We only had one day of rain but it was still warm and pleasant.

We spent time at the surf beach and at the calm waters, we were very fortunate because many beaches had to be closed along the Sunshine Coast and Gold Coast however at Bribie Island which is near where my Nana and Pop live it remained opened. The waves were a little rough and unpredictable and piles of sea grass was been tossed up in the waves but it was warm and refreshing and as the waves rolled in over my legs and feet they tickled a little and felt so lovely.

The sand on Queensland beaches is so soft and white, it is fun to run it through your hands or scrunch your toes up in it although I felt just a little uncomfortable when it stuck between my toes and scratched. During our time in Queensland we had icecreams by the water front, they were melting as we ate them in the heat, I had a sorbet as icecream is one of the food items that really upsets my stomach. We watched people fishing, they did not seem to be catching anything but were enjoying themselves, we had fresh fish and chips for dinner one night and found a cane toad in Nana and Pop's backyard which Pop stabbed with his special stick while Jarrett put dettol on it, they are really strange looking animals. On our last day we saw some tiny clear jelly fish in the water, they were bobbing around near the edge of the water looking ever so graceful and peaceful.

Our time away was extremely restful and enjoyable, it was so fantastic to be with Nana and Pop at their house and spend Christmas with them. It is a time that I will treasure and it was so wonderful not to have to have doctors appointments or treatment.

However now we are back home I have a series of appointments and my growth hormone treatment to contend with. Having some time away from all of that was such a relief, it was almost like being normal, most people my age don't have to face every day what I have to. I know I was given my journey for a reason and I will keep fighting to help others each and every day.

My first week in January, I have a physiotherapy appointment which I am looking forward to, because while I was in Queensland my right foot became extremely sore and swollen on the top, it is so painful to touch and to move. I am hoping that the rough waves did not do any damage to it, because it is after a day that the waves were really forceful that it became painful. I also have Interclub again, I will be throwing in javelin and shot put.

Wishing you all a magnificent last day of 2011 and I hope that 2012 will be a splendiferous year for you all, thank you for all your support and assisting me in raising awareness and funds for brain tumours, I hope that in 2012 we can all continue to make a significant difference and maybe one day my dearest dream of doctors finding a cure for brain tumours will become a reality.

ALMOST CHRISTMAS

2011-12-24T11:06:00.000+11:00

17th to 23rd December 2011

"Wouldn't it be splendiferous if Christmas was forever, not just for one day. People would be loving, sharing and giving all year through. Remember the good you do for others makes you feel good in yourself."

It is almost Christmas day, such a magical time of year, it always puts a huge smile on my face. The lead up to Christmas has been filled with events and special visitors.

At interclub on Friday, I competed in discus and shot put, I threw 5.41 metres in discus and 2.27 metres in shot put. Even though these weren't PB's I was ecstatic with them, as it was the first time I have thrown since my last seizure. Nalani also threw and got a PB in shot put, poor Jarrett still can't race yet.

Monday was Nalani's Year12 Graduation, it was exceptional, she also received two awards, an academic excellence in Maths and an application in PE. I was so proud of her!

On Tuesday I had my physiotherapy appointment, Kaitlyn worked on my lower back which had been stiff and sore. Next time she is going to do a pelvic release as my right side of my body is pulled up higher than my left side. My Year 7 teacher also came and visited me, it was so lovely to see her again.

I have been busily making Christmas cookies and other food ready for a delicious feast. Wishing you all a very Merry Christmas and a joyous and healthy New Year.

A SPECIAL AWARD AND FINISHING YEAR 8

2011-12-17T12:07:00.001+11:00

Excited and honoured after winning the Pathfinder Award

10th to 16th December 2011

Only nine days until Christmas, what a special and busy time of the year it is. We should not forget that Christmas is not just about presents, it is a day to rejoice and celebrate the birth of Jesus. It is a time to reflect and to think of those we have loved and lost this year and a time to share happy memories with our families.

Last Friday night was our Middle School Celebration, it was a night to thank our teachers for all the wonderful work they have done in nurturing and educating us this year. It was also a night where students are rewarded for their efforts. So you can imagine how surprised and honoured I was when my name was called out for an award. I had never thought that I would ever receive an award and the reward that I received was such an extraordinary one. For I was awarded the 'Pathfinder Award', it is an award for a student who has contributed to school life by 'blazing a trail', showing courage and exemplifying both the Middle School core values and the school motto of Grace, Commitment and Wisdom. Receiving such an award is something that I will treasure always.

On Monday Nalani had her exam for her massage course, I had helped her practise on the weekend and she remembered everything so I knew she would do exceptionally well. In both her practical and theory she achieved a high distinction, which is the highest mark you can get. I think that she is going to make an excellent sports/remedial massage therapist in the future.

This was my last week at school, it was a little emotional to be finishing Middle School, next year is Senior School and there will be many new challenges. We still were doing work this week however there were no pressures of exams. In Maths we worked on probability and on our last day of maths we played Black Jack just for fun. In English we were still looking at Mass Media and learning that many Current Affairs and news programs are quite 'fake'. We ended English by watching some of a television series called 'Frontline'. In textiles I made a candy cane fortune cookie using felt and in Integrated Studies we were looking at careers and how to write resumes.

On Wednesday night it was Jarrett's Year 10 Formal, he looked really splendiferous all dressed up in his black suit, black with white pin striped shirt, Jack Skelington tie and black pointy shoes. He was only allowed to have two members of the family attend pre-dinner canapes and the Year 10 Certificate presentation and he chose Mum and I. The evening was rather cold with a chilly southerly breeze, I think the boys were much better attired than the girls who all seemed to have goose bumps because they had really pretty summer dresses on. When Jarrett received his Year 10 Certificate I was so excited for him, he did stupendously well and looked proud of himself. We had to leave after the presentation and the Year 10 students and teachers then had dinner and dancing. He now only has two more years left at school, I know that he will continue to do well in all his studies.

On Thursday I had a special day with my friend Ally, we went out to lunch together, we had American Style pancakes with cream and ice cream, they are really scrumptious but very filling. We then looked around the shops for a little while. The shops are so busy and noisy at the moment, but we still managed to have lots of fun.

We had a house inspection on Friday and we passed with flying colours, I think I have mentioned before that Mum is a cleaning fanatic, our house is always so immaculate. We also had a special visit from Tess my starlight wish granter and her sister Anna. They are both such caring and wonderful people, it was lovely to be able to catch up with them before Christmas.

Our weather is certainly not like Summer at the present time, although the sun is shinning today, the temperatures are well below average, in fact we have had the coldest start to Summer in Canberra in forty seven years!

Tonight is Interclub, it is the last meet for 2011, I am competing in discus and shot put, I have not competed for a few weeks so I am hoping that I am able to throw somewhere near my personal best. Next year I will be trying to get a season best, with no school until February I will not be as fatigued so that may help. Nalani is also throwing tonight, she has been getting some terrific personal bests so she hopes she can get another one tonight. Poor Jarrett, he is not able to compete until next year, he is running again but has to stay off the hard surface of the track just to make sure he has healed properly. He is so frustrated when he can not run as it is something he loves so much. I know exactly how he feels I am often faced with the challenge of not being able to do things that I really love or were able to do prior to having my brain tumour. You have to set yourself different goals and remain positive and determined.

I wish you safe travel if you are going away for Christmas, take time out to reflect on the year and the many rainbow moments you have experienced as well as the times that you were challenged. It is those times that help us become stronger and more determined people. Remember in life we don't know what may be just around the corner, so make the most of each and every day and be the best person you can be always.

Jarrett and I before his Year 10 Formal

SECOND LAST WEEK OF YEAR 8

2011-12-09T15:06:00.001+11:00

3rd to 9th December 2011

Nalani at her Formal

In our lives we often underestimate the true power of a smile, a touch, a kind word, a listening ear, an honest compliment and the act of just caring. These all have the potential to turn a life around so in the rush of life as we head towards Christmas take the time to reach out and change a life.

Today I sent off a cheque to the Sydney Children's Hospital Foundation Brain Tumour Fund, from the middle of the year I had been saving five cent coins and was amazed to discover that those coins added up to $72.50. I know that every little amount of money that I can raise through different ways will go towards one day finding a better treatment for children's brain tumours and hopefully a cure.

Last Friday night was an extremely special event for Nalani and our family, it was her Year 12 Formal. During the day she had her hair beautifully done as well as makeup which she hardly ever wears, when she put on her dress and tiara she transformed into a beautiful princess. Her friends met here and they waited for the arrival of their transport. As the majestic white stretch Hummer pulled up out I was in awe at how colossal and brilliantly shiny it was. Photographs were taken and then the group headed off for a tour around town prior to heading to the formal venue. We headed to the venue so we could see them arrive, then we finally saw the glistening white Hummer pulling in, it was so exciting to see Nalani embarking from it in what would have been like a fairytale for her. It was a most splendiferous occasion that she will remember for a long time.

Even though this is my second last week of Year 8 we have still been working at school. In Maths we are doing probability, in English we are doing Mass Media which is very interesting, we have looked at the beginnings of newspapers through to news on the internet, in Science we are now doing Botany and have been looking at the structure of flowers and in Textiles I completed my felting project and did the evaluation sheet. I think next week will be a little quieter as we only have four days and there are a few events throughout that week.

I had my first physiotherapy appointment with my new physiotherapist Kaitlyn. I was a little apprehensive as I had felt so confident with Rhiannon. We went over some of my history, if we had to do it all, I would have been there all day! Then Kaitlyn worked on my foot, knee and legs which had all been giving me some trouble. She is really nice and I think we will build a good relationship, but I do still miss Rhiannon, my physiotherapy guardian angel.

We are so lucky to live here in Australia, in many Countries children are suffering and disadvantaged, one of the people, Gavin who was really involved in making my book a reality is actually doing an 800km bike ride in January, it is called Thailand - Hands Across the Water, it is a Charity Ride to raise money for disadvantaged children in Thailand. He asked if I could let you all know and put up the web address if any one is interested in supporting it, the address is http://www.onyourbikegav.com/. Because Gavin worked so tirelessly on my book I wanted to assist him in his fund raising endeavour.

Tonight is our Middle School Celebration, it is a night to celebrate the successes of students and teachers, I rested today so that I would be able to attend, if I have a big event on then I have to rest during the day otherwise I become too fatigued to enjoy it.

Nalani has been doing an Introduction to Massage Course and I have been fortunate enough to have her give me some relaxation massages, she is so talented at it, she is hoping to go further and do remedial sports massage as well as fitness in the future.

Jarrett went back to running and he was doing exceptionally well you could not even tell he had had an injury but last Saturday at the track he felt a twinge in his foot so he pulled up. So for the rest of the year he is not going to run on any hard surfaces, only grass that will ensure that he experiences no more twinges. I am looking forward to watching him run again next year in races, I think he is going to run many personal bests.

Wishing you all a week filled with many rainbow moments and I hope that you are not too stressed and busy as this time of year can be very tiring. Remember to smile, care, reach out, compliment and listen then you could make a difference to a persons life.

GROWTH HORMONE EDUCATION

2011-12-03T11:12:00.001+11:00

26th November to 2nd December 2011

Summer commenced this week but our weather was certainly nothing like Summer, on Tuesday night we had a massive storm with fierce, rumbling thunder and jaggered fork lightening that lit the entire darkened night sky, the winds ripped through the air and bent some of the trees almost in half and the rain tumbled down in what seemed like bucket loads. It was extremely humid and difficult to sleep, the rain and storms continued into Wednesday, then on Thursday and Friday we experienced cool, overcast conditions.

School this week has not involved any exams, we have been finishing off tasks. In Maths we worked on probability which is quite enjoyable. In English we worked on different languages used in text; formal, semi-formal, colloquial and slang. Then we had to do our own dialogue based on the novel Lochie Leonard, the dialogue was a discussion between two of his teachers in the staff room at lunch time. In Textiles my felt piece was finally finished and then I had to design a pattern and cut the felt out. We are making a mobile phone/ipod pouch. We then sewed the two pieces together using blanket stitch, all I have to do now is the finishes touches and write up the assignment sheet. In Science we were using the microscopes and looking at living creatures from swampy, foul smelling water. There were various types of worms that you could see their digestive system working, tadpoles and little insects.

Jarrett went back to running training this week and was running like he had never had an injury, Nalani also is back training again, although she feels a little unfit she is running well. I did some throwing practise on Thursday, my hand is still a bit weakened from my seizure so I found my throws a little more difficult than I had been.

Nalani is doing an Introduction to Massage intensive two week course, she loves it and we have been lucky enough to have her practise on us. One night I fell asleep because it was so relaxing, she is going to make a terrific sports/remedial massage therapist in the future.

The big event this week for me was my visit to the Hospital for my growth hormone education session. My growth hormone is called Genotropin. Hormones are chemical messengers that circulate through your body. Hormones do many different things, some control how much sugar is in your blood and others control how much calcium is in your bones. Hormones are made in your body by special glands, these are called endocrine glands. Endocrine glands are found in different parts of your body and are like hormone factories. All of your endocrine glands form your endocrine system. The pituitary gland is the main endocrine gland, as well as producing eight important hormones it also controls many other glands in the endocrine system. The pituitary gland makes growth hormone and releases it into your blood where it is carried through your body. Growth hormone helps you grow properly, it tells your liver and kidneys, muscles and bones to produce growth factors and controls how much muscle you have, it also has a lot to do with how much energy you have and how you feel.

Normal growth stops for girls when the growing ends of the bones close which is usually at the age of fifteen to sixteen and for boys it is seventeen to eighteen. So Genotrophin is a synthetic version of a growth hormone, it is produced in a laboratory by a process called genetic engineering. Genotrophin helps to promote the growth of long bones in the body, it affects how your body deals with carbohydrates, fats and proteins, it helps keep the body healthy, it helps grow good strong bones and it helps build muscle. It can only be given by injection because it is a protein and would be destroyed by the acids in the stomach if it was swallowed. So every night I have to have the injections because the human body makes growth hormone mainly at night the injection is given then to copy the process.

At the education appointment Mum and Dad had to practise injecting it into a practise rubber piece of skin. Mum has done it all before with my GCSF injections that I had to have following my stem cell transplants during chemotherapy so she was really comfortable doing it. She is the one that will give me my injections every day. Mum even had to inject an injection without any medication in it into her leg so she could see it was not painful. She said it did not hurt going in however a little while later the area around the injection site was a little sore. I am not worried about injections at all, I have been through so much already they are a breeze. I am on a high dose, surprise, surprise, I also seem to have to be on a high dose treatment, because my growth hormone levels are very low. As with all medication there are side effects and the higher the dose the greater chance of effects. The effects are headaches, nausea, vomiting, visual problems, limping, swelling of the arms or legs, extremely painful joints or muscles, unusual muscle stiffness, tingling or numbness in the fingers, hands or feet, extreme tiredness, a change in thirst or appetite, curvature of the spine (which I already have due to radiotherapy) and of course there is a high chance that it can stimulate tumour growth. If I experience headaches then I will have to be checked immediately in case it is the residual tumour growing or new tumours growing, so they would do an MRI quickly to check that possibility. I also have to have regular check ups to be measured as well as blood tests as part of monitoring whilst I am on the growth hormone injections.

I was supposed to have a dietitians appointment today but it was cancelled, I now have to wait until January to see her again. She is going to put me on a different elimination diet then as it could make me not feel well if I am eating mainly the additives and preservatives that are causing me problems.

Today is also Nalani's Year 12 Formal, she has been busy attending appointments. it is so very exciting, and I know that she is going to look just like a princess out of a fairytale tonight, she and some friends are going to be arriving in style because they are going in a white stretch Hummer.

On a sadder note a couple of people we know of have passed away this week from brain tumours which they have been fighting for quite some time. Hearing this news makes me more determined to continue to try to raise as much awareness as I possibly can and also those much needed funds. So many groups of people and charities ask for money but I feel that this cause is one that really needs the support because it is the most devastating cancer, a cure has to be found.

TEARS FROM THE SKY MATCH MY WEEK

2011-11-25T14:55:00.001+11:00

19th to 25th November 2011

As I sit to type this entry large tear drops of rain are falling freely from the overcast skies over Canberra,the envigorating sunshine that put a smile on all our faces has disappeared, to be replaced by bleak cold weather.

Last Friday it was Interclub again, I threw the discus and shot put, I did not get a personal best in either event throwing 5.68 meters in discus and 2.28 meters in shot put, I had expected that because I had thrown early in the week. I always enjoy participating at Interclub, being with other athletes of all ages and abilities. Nalani threw two personal bests though and was really pleased with herself. Jarrett of course was not running due to his injury however he was there calling out splits for members of his running squad, he is like that, he always encourages other people.

My week at school began with a Maths exam, we had two long test papers one was on catestian planes and the other was on all the work that we have covered throughout the whole of Year 8. I love Maths and had studied for the tests, however during the test I found that my right hand began tingling and became heavy and painful, then my head was throbbing, it actually felt like a balloon being blown up so large that it was just about to burst. My eyes were also flickering and making it difficult for me to focus on the words on the paper. Then it happened I blanked out, everything goes dark for a little while and then I hear my name, it is Mum, she stays calm but is probably extremely worried. When I can see light again I feel so very tired and my right arm is paralysed, I am not able to move it, it just hangs by my side. My head still throbbed and I felt very nauseous it was horrible. I came home and slept, it helps me feel a little better, I had to elevate my arm to give it support and I took pain killers for my head and stomach pain.

Tuesday I was still not well, my arm was still useless and my head was still throbbing and felt unordinarily large. Nalani had a farewell to Year 12 assembly in the morning which I went to with Mum. It was very special as the Year 12 students paraded in to the Green Day song Good Riddance (time of your life), I noticed that Mum had a glistening tear in her eye as Nalani walked in. After several speeches the students were then congratulated and wished luck for their exams and they each walked up onto the stage with really special comments been made about each of them. Nalani had some really lovely words said about her including that she was mature and a sincerely empathetic person. At the end the Kindegarten children sang a song and gave the Year 12 students a flower, it was really magnificent.

I then had physiotherapy which I could hardly wait to have, Rhiannon is always able to help me when I have problems. She was able to loosen the excessively tight muscles in my neck, shoulders, arm and hand, then while she was working on my calves which were tighter than usual also, Mum did some ultrasound on my right hand and wrist. Then my physiotherapy session came to an end, it was one of the saddest days of my life because it was Rhiannon's last day, she has been my very wonderful and extraordinary physiotherapy gurardian angel. She was working with me before I was even diagnosed with my brain tumour, she was there for me when I returned for those few weeks after radiotherapy and then of course when I finished was chemotherapy and was so weakened. She has a bright light that shines from within her, it is like a magic light that radiates and helps her patients feel so much better. I will miss her so much and I cried when I gave her a gift and a huge hug. I hope that all her dreams come true and that she has many, many rainbow moments in her future life.

I went to school on Wednesday, in Textiles I worked on my felting, I was still wetting it down and gently rubbing it with the bubble wrap, then the teacher said it was ready to roll. My poor right arm was still useless so I had to use my left, it was a little difficult but I still persevered and did it. It still needs a little more rolling, you roll it until it shrinks, then you wet it and then it is ready to be cut and sewn. In Maths we were working on a booklet that had been made up by all the students in the class.

This week I also had a visit from the parish assistant who gave me communion, I am not always able to make it to church as I am not well enough or too tired so they sometimes come to our home to give me communion and do a reading and a prayer. I still believe that God has given me this journey for a reason and even though sometimes I feel a little sad that I have to travel this journey I know that through my journey and trying to raise awareness the best I can maybe just maybe one day in the future there will be a cure for brain tumours.

I have still been saving those five cent coins and will be sending them off to the Sydney Children's Hospital Foundation Brain Tumour Fund early in December because they close from 23rd December until 9th January, so anyone else who has been saving them may want to do the same. Cheques are made out to Sydney Children's Hospital Foundation Brain Tumour Fund and the address you send them to is Tara Donnelly, Sydney Children's Hospital Foundation Locked Bag 5, Randwick NSW 2031. You can also send a cover letter telling them that you were raising the coins because you had read about it on my Blog.

Today we had a telephone call from the Canberra Hospital Paediatrics unit to let us know that my growth hormones have been approved, the next step is to meet with the educator to tell us all about them and how Mum has to inject them. We have an appointment next Tuesday to do that and then we will be given a prescription for the hormones. I am excited that they are going to help me but are aware that there are side effects which may not be pleasant.

As the rain still tumbles like large tears from the angels in heaven my left hand has fatigued and I need to rest it. Wishing you all a wonderful week, never give up on your dreams, look for inspiration in others, don't underestimate your courage and let the light from within your heart shine brightly on the lives of others.

ACT SCHOOLS TRACK AND FIELD CHAMPIONSHIPS

2011-11-19T14:19:00.001+11:00

12th to 18th November 2011

I truly believe that if you are determined enough and possess enough courage then you can achieve even the goals that seem almost impossible.

This week has been extremely hectic and exhausting for me both mentally and physically, firstly with school as we have been working on end of year tasks. In English we did revision early in the week to prepare for our exam questions on Thursday. Then of course the exam was Thursday, it was based on the novel Lockie Leonard Human Torpedo and there were two parts to it. Writing is so difficult for me because my fine motor skills have been affected by my tumour and treatment, it took me fifteen minutes to write one small paragraph. I did finish the exam eventually with the assistance of a scribe but it had zapped all my energy so on returning home I slept.

In Textiles I began my felting project, you have to lay down your base colour by sandwiching it, that is putting the felt one way and then the opposite way to help it bind. I then added my polka dots in four different colours and I was then able to put the prepared product onto some bubble wrap and place a piece of material over it, then wet it down with hot water and some lux soap flakes. Using another piece of bubble wrap I smoothed over the material, this process binds the materials together. Next week I have to work on the next process of rolling it. The procedures get repeated until you produce a piece of felt that can be made into a product, we are making mobile phone/ipod cases.

For Maths we did revision of all the work that we have done this year, there are so many things to remember, we have our exam next Monday, it will go over a double period and will assist the teaching staff to decide which level classes we are in next year.

Tuesday was the most extraordinary day for the whole week because it was the day that I was competing in the ACT School Track and Field Championships, through being determined and even coping with some pain I was throwing in the discus, shot put and javelin events. The weather that day could only be described as perfect, the radiant sun was shinning ever so brightly in the crystal clear blue sky and there was only the slightest hint of a breeze which was a gentle, refreshing on. My first even was the discus, I had those familiar butterflies in my stomach that appear whenever I am a little nervous, but once I had my first throw they began to disappear. My second and third throws went longer each time and my final distance was 6.02 meters which was a personal best. The next event was shot put, after doing so well in my discus I felt much more confident in shot put, my legs were a little wobbly but that did not worry me, I looked ahead, cradle the shot put near my neck and threw with all my might, it seemed to go a good distance then my second and third went further again. Upon measuring I had achieved another personal best, 2.61 meters which was a whole twenty one centimeter personal best. The final even was the javelin unfortunately I had tired from my huge efforts in discus and shot put but still remained determined. When I was given a shiny gold 400g javelin to throw I thought it may be lucky. My throws were good and I was not sure whether I had achieved another personal best, I had not but it was second best distance I have thrown so that was fantastic. Throughout the day I went to all my events with the other AWD athletes, they were so encouraging and positive it only made me more positive. I ended up coming first in all my events for my age and category. As there were not that many athletes with a disability, only twelve, they combined some ages and categories for the ribbons and I ended up with a first in javelin, a third in discus and a third in shot put. I have to say that it is a day that I will treasure.

Apart from that I have not done too much else this week as I was exhausted, I did help Mum to write the Christmas Cards ready to post on 1st December. I have Interclub on Friday afternoon, I will be competing in discus and shot put, I am hoping that I can equal my performances from Tuesday but won't be too disappointed if I can't.

Nalani finishes school next week and then has her Year 12 exams, it is so exciting for her and I know that she will do extraordinarily well, she studies really hard. She did a Maths test for the Term and she got top of the class and achieve a 'z' score of 3.31 which is unbelievably good.

Jarrett went for a jog and found out that he has no pain now, so he can just jog next week and then begin training again the following week, it has been frustrating for him as he loves his running so much, but he is also sensible because you don't want to run on an injury and make it worse. He has also done well at school achieving top marks in his Sport Science assignments.

Keep believing in yourselves, don't be afraid to challenge your abilities to reach those goals that you thought may be impossible.

DOCTORS APPOINTMENTS

2011-11-11T19:35:00.001+11:00

5th to 11th November 2011

Today is a special day when we remember the soldiers who lost their lives to make our Country the place it is today. At 11 am on 11th November 1918 the guns of the Western Front fell silent after more than four years continuous warfare. The allied armies had driven the German invaders back, having inflicted heavy defeats upon them over the preceding four months. In November the Germans called for an armistice (suspension of fighting) in order to secure a peace settlement. They accepted the allied terms of unconditional surrender.

The 11th hour of the 11th day of the 11th month attained a special significance in the post-war years. The moment when hostilities ceased on the Western Front became universally associated with the remembrance of those who had died in the war. This first modern world conflict had brought about the mobilisation of over 70 million people and left between 9 and 13 million dead, perhaps as many as one-third of them with no known grave. The allied nations chose this day and time for the commemoration of their war dead.

This week for me was one that was filled with doctors appointments and blood tests. It all began on Monday with an appointment with my Endocrinologist. He found out that my growth hormone request was still pending and it would be another six to eight weeks before it is all approved and I can begin daily injections of the growth hormone which will assist me to grow a little, I have not grown for well over a year now and people of my age are usually going through quite a growth spurt. Even with the growth hormones I will never reach the height that I would have been before my tumour. I was also told that I am going to experience problems with my spine from the extremely high doses of radiation that I had to have, there is already a curvature and it is likely to worsen. The thyroid is one of the bodies organs that respond poorly to radiation, my thyroid function has been dropping over my last blood tests and will continue to drop and cause problems. Often when people have had really high doses of radiation there is a high chance of them developing thyroid cancer. So the Endocrinologist decided to send me for more blood tests to see what is happening. He is also organising a bone density test for me as that is another thing that can be affected by the radiation. I will be seeing him again in February for my regular monitoring however he will see when as soon as the growth hormones are approved.

On Tuesday I had an appointment with the Oncologist from Sydney. With not being on the study any longer I am only been monitored six monthly rather than three monthly. My high ferretin levels where mentioned and he told me that they were extremely high because of the many blood transfusions I had to have whilst on chemotherapy, it is been monitored as if it does not drop through natural ways like puberty, which will not occur for a long time, or may not at all because of my treatment and tumour then I will have to have medication for it. He was amazed that I was competing in throwing events and thought that showed true determination. With a tumour like mine there is a really high risk of recurrent disease, the team are amazed that I have not had a recurrence as yet as they had expected it to happen. Some people go five years without a recurrence but then it returns more aggressive than before. I still have the residual tumour which we do not know what it may do in the future but I feel like my positive attitude and determination to try to beat this disease is helping. I will be having another MRI in February on both my brain and spine and then going to Sydney after that for more appointments. He is trying to organise an appointment with a neurologist doing a Canberra Clinic in the New Year also.

I had physiotherapy on Wednesday, it was my second last appointment before Rhiannon leaves, she worked on my shoulders, neck, calves and right heel which is giving me a few problems because of the spur. I have an appointment with her again on 22nd November and that is the day she leaves. I will miss her so much, she has been my very special guardian angel and has been such an important part of my rehabilitation and ability to be positive.

On Thursday I was supposed to be competing in discus, javelin and shot put in the ACT Schools Championships but the weather had other ideas, the rain had been pouring down out of angry, grey skies the night before and then that morning large drops of rain continued to pelt down, forming large puddles on the ground. The Championships were postponed, they are now going to be on Tuesday next week and the forecast for that day is sunny and twenty nine degrees.

I had a blood test today to test my thyroid function, insulin, growth hormones and a full blood count as well, I now watch my blood tests, it is rather interesting to see the fine butterfly needle enter my skin and go into my vein which is so used to been poked and then the thin blood flows down the fine tube and into the vial. the needle does not even seem to sting anymore when it goes in. Today after I had my blood test my vein continued to bleed for a little while afterwards so we had to apply extra pressure to it. That used to happen when I was having my chemotherapy and my platelets were low but they should not be that low now.

Finally I have completed all the assignments that I needed to finish, my last one was one on Kenya for World Studies. Next week we have several tests and the week after we have moderating tests to work out what level classes we should be in the following year.

At Interclub last Friday night I was throwing javelin and shot put. I was so thrilled to throw a personal best in javelin, my previous result had been 4.81m and I threw 6.06m. Then in shot put I was only three centimeters off my personal best so I was also happy with that. There is no Interclub this week but there is one the following Friday and the program will be discus and shot put. Nalani also threw a personal best in javelin and she was also able to run two laps of the track and did not limp at all. Jarrett again had to be a spectator but his foot has now healed so he will be able to jog on the weekend and then gradually return to full training and then racing.

My Nana and Pop's dog, Chifley is recovering well from his second surgery, poor him having to have two lots of surgery in three weeks, I think he is a very brave dog. It must be hard for animals, they can not talk and tell their owners how they are feeling and it would be so difficult for them to understand that they need to stay still.

For anyone that is going through a difficult journey, always believe that there is a rainbow out there for you that will bring you hope, healing and happiness.

A PERSONAL BEST IN SHOT PUT AT INTERCLUB

2011-11-05T10:05:00.002+11:00

28th October to 4th November 2011

I wonder how much of your potential you have reached?
What has held you back?
What do you fear most?
Your potential will open up if you embrace life with a positive attitude despite the challenges and fears that may cross your path.

At Interclub on Friday I threw the discus and the shot put. Discus has always been my favourite field event even before I was diagnosed with cancer and shot put was the one that I felt I was not very successful at. Through my journey I have learnt to face so many new and frightening challenges with courage and determination, so I have taken a positive attitude into my throwing. To my surprise and delight that attitude has helped me to throw a personal best in shot put, I threw 2.40m! Sometimes when you work hard and push yourself you may then face a slight hurdle, the day after my huge throwing effort I had a very swollen knee and painful foot. As the week went on and with some care from Mum the swelling went away and the pain in my foot disappeared.

School has been so tremendously hectic, we have many assignments that have to be completed as well as having to study for exams. In Maths we are still working on cartesian planes and our test will cover all the work from the year. In English we have been looking at how to write short answer responses to questions about text. We have begun to plan our felting project in Textiles and in Science we have been investigating the respiratory system, it is so interesting and miraculous how our body functions.

Our weather has turned glorious, the sky is such a clear crystal blue and the sun is so luxuriously warm and inviting. The gardens are abundant with colour and fragrance, our rose bushes are bursting with heavenly scented blooms and there are more buds ready to burst open. The grass is growing rapidly and the hum of lawnmowers can be heard frequently in the street.

Next week I will be kept busy with doctors appointments, I see my Endocrinologist and he may be able to shed some light on when the growth hormones may be approved. My other appointment is with the Oncologist who will be doing his three monthly check up on me.

I have also been selected to represent my school at the ACT Schools Championships for discus, shot put and javelin as an AWD athlete. It is such a special honour to have made it through to this level and I am hoping that I will be able to do my best. Jarrett was also selected to run in the 3000m, 1500m and 800m but won't be able to because of his plantar fascia injury, he is absolutely devastated about it as he was running so phenomenally well, however he has a wonderful attitude and sees this as a challenge that will make him more determined and stronger when he returns from injury.

Nalani is running again and trying to regain her fitness levels, it has now been eleven months since her major knee surgery. At Interclub she also threw personal bests in both discus and shot put, it is terrific that we can compete together in the same events.

So many people we know have been diagnosed with different types of cancer this year, their families have been facing the difficult journey with them. Cancer entirely changes your life, I think that I have become a better person because my cancer and appreciate life more.

May you all find many positives in your lives this week and strive to reach your full potential. Good luck also to the many students who are doing exams in the coming weeks.

WHAT HAPPENED TO OUR SPRING WEATHER?

2011-10-28T13:56:00.000+11:00

22nd to 28th October 2011

Today is National Bandanna Day, by purchasing and wearing a colourful Bandanna people are supporting those that are suffering from Cancer. When you see the television advertisements that tell us that one in three people will have some form of cancer in their life time it is a frightening thought and more research needs to be done to try to prevent this from worsening.

On Friday last week at Interclub I threw javelin and shot put, in javelin I threw 4.81m and in the shot put 2.09m which was not a personal best unfortunately, I was quite tired from a busy week at school so did not have as much energy or strength for my throwing. Jarrett ran in a 1500m invitational race, he was incredibly fast and ran another personal best, he did a 4:11:12 which was a five second PB from the week before. He then ran a 200m which is a sprint race and something he normally does not do but he still race fast 27 seconds.

On the weekend I am proud to say that I walked two laps of the AIS track, that is 800m with my rollator and although my knee swelled up a little I had an enormous smile on my face when I finished.

We had absolutely splendiferous weather for a few days and then it all turned dismal, it was dreadfully cold, almost like the middle of Winter again, it rained and the wind cruelly bent the beautiful Spring plants. Today however has improved a little and although it has been rather overcast the sun has managed to shine through occasionally and the temperature is significantly warmer than earlier in the week.

On Monday I had my paediatrician appointment, he was so impressed that I have begun throwing again and my determination to achieve my goals. He was however concerned about my growth and my blood results from my growth hormone tests showing that my levels are extremely low, the growth hormone injections have not been approved as yet and often endocrine hormone issues can cause other major body systems to shut down and that is likely to occur in my case. Growth hormone injections will increase my muscle bulk in my body and I will begin to grow however I will not grow in my spine because of the high levels of radiation I had to have. I still have nystagmus in all directions which worsens when I am tired and that has to be monitored because it can cause vision loss. The remaining tumour has remained stable although there had been some enlargement reported.

That night was the presentation night for the Cross Country Club, Jarrett won the Junior Male Distance Runner of the Year, he won a large trophy which he has now won three years in a row and a gift voucher and then he won the Under 19 Male Champion. Every time he does so well I feel so proud to be his Sister and he is always so modest about winning awards I think that is wonderful.

I have been working on several school assignments, I have to do a little on them and then take a break and then do some more, when I sit for too long, my eyes flicker too much that I am unable to see what I am doing as well as I get a headache. I have to be careful because in the past when I have put myself under too much stress I have seizure and they are terrible and a little debilitating.

At school we are going to have a number of tests, firstly to work out what level classes we will be in next year and also to give us practise ready for the exams we will face in Year 9 and 10. My difficulty is my processing and writing speeds, I can write nine words a minute and most students of my age and grade can write in the high twenties into the thirties words a minute. When doing tests, I have to do a little, stop, rest and then do more so my ability to complete it in the given time is virtually impossible.

I had physiotherapy yesterday, the marvellous Rhiannon yet again was able to provide me with some relief from my tight and sore muscles, this time my right hip, knee, ankle and foot were the problem. My back was extremely tight so she loosened it as well as putting heat on it. In my right foot I have a bone spur (osteophyte) it is a bony growth formed on normal bone. Most people think of something sharp when they think of a "spur," but a bone spur is just extra bone. It’s usually smooth, but it can cause wear and tear or pain if it presses or rubs on other bones or soft tissues such as ligaments, tendons, or nerves in the body, the feet are a common place for one to occur. I will have physiotherapy in another two weeks, that is in November, Rhiannon is leaving at the end of November, I will truly miss my physiotherapy guardian angel.

Poor Jarrett he was running on Monday and injured his foot, he has a plantar fascia injury and is not able to train for a week, he has his foot all taped up with tape that almost resembles a shoe, he has to wear cushioned socks and good shoes. It is only a minor setback and he will no doubt be back running very quickly as he always heals so well and then he will be breaking personal best times again. So when Nalani and I compete at Interclub later today he will be a spectator which will be difficult for him.

At Interclub I am going to be throwing the discus and shot put, I am hoping that I can achieve a personal best this time, if not though I will keep trying and eventually I will do it.

Nana and Pop's poor little dog, Chifley had his knee surgery and it all went well, however when he went to have his stitches pulled out, the pin the vet inserted has moved and now he has to have surgery again on Tuesday to put it back in the correct position.

Praying that you and your families are all keeping well and that rainbows shine constantly in your lives bringing you so much joy.

BACK TO SCHOOL FOR TERM 4

2011-10-22T13:09:00.000+11:00

15th to 21st October 2011

The sun was shinning ever so brightly for our return to school for Term 4 this week and what a busy week I had, filled with new topics and culminating in four assignments.

In Maths we are learning about Cartesian Planes, they were developed by Rene Descartes, a French philosopher and mathematician, he created the system of positioning on the number plane with a number pair, which are called coordinates. I am finding this interesting and not too difficult to do.

For English we began a new novel called Lockie Leonard - Human Torpedo, it is written by the Australian Author Tim Winton, it is about a boy in Year 8 who has moved to a new town with his family, he loves surfing. He meets a girl that he just can't get off his mind, it is a story about morality, standing on your principles or ignoring them to belong to the group. It is a very different novel to what I prefer to read but is quite humorous at times.  A television series has also been made about it and we have to do an analysis, comparing the characterisation in the book and the series and differences between the two.

In Science we are look at Plant and Animal Energy, we began by talking about systems in the human body, these are the respiratory system, circulatory system, endocrine system, lymphatic system, immune system, nervous system, reproductive system, digestive system, muscular system, urinary system, skeletal system and cardiovascular system. I really enjoyed looking at this area of Science, I have learnt so much about many of these systems through my illnesses. We also learnt about how substances get in and out of cells by doing an experiment with potatoes, cutting them in half and then scooping out the middle and putting sugar in one and water in the other then placing them in a dish the one with sugar in it was put in a dish with water in the bottom and the one with the water in the top was put in a sugar solution, we placed them on a shelf in the Science Room and will see what has occurred next week.

In Integrated Studies we are doing a unit on The United Nations and International Parliament, we had to select a Country and learn as much about it as well as looking for news articles. We have to then represent our Country at our in class International Parliament. We need to know a lot about our Country and be ready to answer questions from representatives of other countries in regard to issues and events that are occurring there.

I have now finished my embroidery project, I made it into a cushion, it looks so amazing and I am really proud as it had fine motor skills involved and they were often quite challenging for me. We will now begin on our felting project and that will take us until the end of Term.

Last Friday afternoon I competed in the Athletics ACT Interclub Competition, I threw discus first, feeling rather unstable and nervous I found my inner courage and was able to stand to throw the 750gram discus. My first throw was a foul, but my second and third throws were successful and I threw the furthest I have, 5.92m. I no longer felt nervous and when my shot put event came up my butterflies had gone. Shot put is more difficult for me as the weight of the shot put is heavier at 2kg, again I had to get balanced and then I threw, three good throws with my best being 2.19m. Competing in two events was tiring but I had the hugest smile on my face because I was there with other athletes doing my best , enjoying myself and making new friends.

Jarrett ran in a 1500m, he was awesome, he won and achieved a personal best time of 4:16:29, then in the 400m he also ran a personal best of 57:86. Nalani did some throwing with me and although not throwing personal bests she threw well considering she has had her knee surgery.

I saw the Nutritionist today, she was happy that the elimination diet she had placed me on was showing that I was having problems with some of the chemicals in foods, I have to continue on the diet noting down when I am affected. During the Christmas Holidays she wants me to then just have the foods with the chemicals in from each group for one week at a time, if the affect is too adverse then I have to stop. This will then pinpoint exactly what is happening and we will be able to then move forward. The groups of chemicals we are investigating are salicylates, amines and glutamate. Then we are going to also look at food colourings and preservatives through elimination also.  She is also copying recipes and writing a diet plan to assist with my cholesterol.  She checked my BMI and is happy with it and as I have not grown and with cholesterol and insulin resistance she felt the diet I was on before was damaging rather than assisting me.

Tonight I am competing at Interclub again, this time in the javelin and shot put, Nalani is throwing with me also and Jarrett is doing an invitational 1500m and a 200m. The weather is perfect and we are taking a picnic dinner to have, so I am really looking forward to it although I am rather tired from my hectic week at school.

I see my Paediatrician on Monday, I think he will be so impressed that I am doing my athletics and that the Nutritionist is sorting out my stomach problems. I have to have blood tests, MRI and bone density organised and any other tests he feels that I need to have done.

As the gentle breeze blows refreshingly through the open sliding door I wish to remind everyone that Bandanna Day is on 28th October, I will be wearing one of mine, in support of those are suffering from Cancer. I also pray for those whose lives have been affected by this devastating disease and continue to wish that a cure can be found so in the future no one will suffer from Cancer.

SECOND WEEK OF THE SCHOOL HOLIDAYS

2011-10-14T14:48:00.002+11:00

8th to 14th October 2011

'TINKERBELLE'

Here's a happy thought - your happiness can illuminate the happiness of countless others, so let your happy thoughts shine out from within to brighten our world.

Our weather has remained unpredictable like many parts of Australia, with rain, winds, colder daytime and nightime tempertures and overcast skies most days. However as the school holidays draw to a close the sun has shone through, envoking smiles on our faces.

I have spent this week again resting and regaining my strength ready to face the busy term that is ahead of me. Nalani and Jarrett have been working enthusiastically on their assignments and preparing for exams that they both have next Term.

I took the opportunity when the sun was shinning to plant some delicate, colourful flowers in my fairy garden, it looks so beautiful with the colours of bright pinks, purples, apricots and reds. When the sun has not been out I have spent the time doing some cross stitch, it is a Christmas one, a reindeer. I have also been working on some more latch hook, playing upwords and watching a couple of DVD's.

Yesterday I had physiotherapy, Rhiannon worked on my neck which was really stiff and sore on the right side and also my right knee which has been swelling, clicking and painful, it is aggrivated when I am doing my throwing practice but I know that sometimes pain is good because it can be muscles that are strengthening that have not been used for a while. Rhiannon also taped my knee to give it support for my throwing events today. Whenever I see Rhiannon she always is able to help me so that I can continue to work on my goals.

Nalani also had physiotherapy on her quadricep which had a Grade 1 strain, it has almost healed, she is not able to run on it yet so she is also going to compete in the throwing events today.

Today is a very special day, it is Tinkerbelle's 2nd Birthday, I made her a wonderful card and gave her a gorgeous new pink collar with eleven little pretend diamonds and a bell on it. Yesterday I gave her a bath, she loves having a bath, she looks so tiny when she is all wet, Jarrett says she looks like a drowned rat. After her bath I blow dry her and she becomes a soft ball of lilac fluff again.

Later today I am going to compete at Interclub in the discus and shot put, I am really looking forward to it, I am hoping that I may be able to achieve a personal best and then continue to build on those results each time I compete as I become stronger. Jarrett is running in the 1500m and then the 400m and as I mentioned earlier Nalani is doing the discus and shot put along with me.

I can't believe that the school holidays have come to an end, the time flew by so quickly. Next term is a much shorter term with only nine weeks, then I will finish Middle School which is Years 6 to 8 at our School, next Year I will be in Senior School which is Years 9 to 12. I have been told what electives I have for next year, I will be doing Visual Arts and Sports Science, I am very excited about both of these electives as I love doing my art and also have a passion for sport and how muscles work in the human body.

My box of five cent coins is almost filled, I am thrilled and looking forward to just before Christmas making that donation to The Sydney Children's Hospital Foundation Brain Tumour Fund. Now I will have to think of an activity that I can do next year to continue with my dream of making a difference and assisting as much as I can in raising funds so that a cure can be found for brain tumours and a less devastating treatment that does not leave us with such horrific side effects.

May you all have a splendiferous week, for those who are going through a difficult time may a rainbow appear and brighten your day and don't forget to let your happy thoughts illuminate the lives of those around you.

WEEK ONE OF THE SCHOOL HOLIDAYS

2011-10-07T15:47:00.003+11:00

1st to 7th October 2011

It is unbelievable that we are in the month of October, only two more months until Christmas and the shops are already beginning to stock their shelves with candy canes, cards, wrapping paper and decorations, this year has gone by so very quickly.

The weather has been so unusual, we had a few days where the sun shone brightly, smiling upon our lives then those clouds came over again turning beautiful blue skies to a dismal grey and then the clouds began to weep rain. Rain assists our earth and rejuvenates nature but when you are on school holidays it makes it just a little miserable.

Poor Nalani and Jarrett have several assignments to complete during the holidays, so they have taken advantage of the miserable weather to work on them so that when the sun is shinning they can enjoy it. I had to finish off my embroidery for textiles and I am so pleased with the final result.

I have been resting so that my energy levels increase ready for a hectic term back at school when I return. I have also done some decoupaging, I found a doorstop in the shape of a cat, decoupaged it with tissue paper with a black background and numerous coloured spots then completed it with a red ribbon with a bell. I have also been working on some new latch hook designs, I think that latch hook would have to be the most splendiferous craft, as it is something that you can do and stop when you are tired, then pick it up again and there are so many things you can do with the completed project, like rugs, cushions, wall hangings and frame them.

Next week is the first Interclub competition and I am going to compete in discus and shot put. I was able to practise my discus this week at running training and threw the longest I have thrown since my cancer first appeared. Unfortunately I have not been able to practise my shot put because of the dreadful weather, hopefully it will clear and I can practise before the competition. Nalani is also going to throw at the competition because she has a grade one strain in her quadriceps so does not want to aggravate it running. Of course Jarrett will be running, he is aiming for the Youth Championships in March next year, he has to gain a certain time in his event to nominate for it.

Today was Mum's Birthday, Nalani, Jarrett and I organised breakfast in bed for her, she was really surprised and overjoyed that we did that for her. Although it has been raining most of the day and too wet to do anything outdoors, she said that we had made the sun shine especially for her through making her day extra special. I have made a delicious vanilla butter cake with vanilla icing to have after dinner tonight, I think that she will enjoy eating it.

We have another Birthday to celebrate next Friday, it is Tinkerbelle's 2nd Birthday, she is such a caring cat, she always is near me looking after me, sometimes I think she is trying to talk to me because she meows to tell me things and she brings so much joy into my life.

Poor Nana and Pop's dog Chifley has to have an operation on Monday, he keeps dislocating his knee and it is difficult and painful for him. It is very similar to what Nalani had done on her knee, but he will not have a knee brace. It will take about four to six weeks for it to heal, I hope that it will not be too horrible for him, Nana and Pop love him very much.

I have begun my elimination diet, most of the food that I can have has no colours or flavours, I can add some foods on the high list but have found that some of them are causing stomach irritations. The diet lasts for two weeks and I have to take note of how different foods affect me and then I return to the nutritionist and she will review it.

Mum was very excited when her team Manly won the Rugby League Grand Final, although she was a little anxious when the Warriors made a comeback in the second half. I told her that if the Tigers were playing Manly then the Tigers would have won. I have a feeling that perhaps next year may be the year of the Tigers.

I am hoping that next week we will have some more days filled with sunshine to brighten the last week of the school holidays. My plants in my fairy garden which were ones for Winter/Spring are dying off and I am hoping that I can replace them with some new vibrantly coloured and fragrant ones.

Wishing everyone a week filled with many rainbows and moments to treasure.

END OF TERM 3

2011-09-30T20:01:00.003+10:00

24th to 30th September 2011

All good things come to an end and today on a showery, bleak day Term Three ended, we now have a two week break. Hopefully the weather will improve and we will be able to spend some time outdoors enjoying the Spring weather as well as daylight savings which begins this weekend.

Last weekend I was able to use my rollator to walk the track at the AIS, I did 400m although I did have to stop just past the finish line on the way round for a rest break. I know that I will be able to build up my distance much more quickly than last time when I was recovering from my stress fracture.

I have commenced work on a decoupage doorstop, it is in the shape of a cat, to finish it off I am going to add a collar and bell, I actually got it off one of my lindt chocolate bunnies I got for Easter. It will be a project I can work on during the holidays along with my latch hook.

School this week has been mainly filled with completing tasks, although we did get one new task and that was a Rich Task for Maths which we had the week to work on and complete. We had to gain as many stars as we could, each task had a different value it was based on ratios and rates. One of the tasks was to find out what the Golden Ratio was and I learnt that the golden ratio is a special number that is approximately equal to 1.618. It appears many times in geometry, art, architecture and music.

On Tuesday it was ASC Championships at the AIS. The weather was a perfect day for running, the sky was a crystal clear blue, with only a few fluffy white clouds floating luxuriously across the sky, there was just a hint of a breeze and the sun was warm and bright. Jarrett was running in the 1500m and the 800m, his first race was the 1500m, he made a brilliant start, running like a real professional, he sat right behind the front runner pushing him the entire race. He finished second in a time of 4:19 which was close to his personal best and a terrific time for the start of the season. Then in the 800m which was a congested curved line start of both boys and girls together, Jarrett flew at the start to take the lead, he ran so well, he and another competitor breaking away from the rest of the field. I thought he had the race won but in the last 80m he was out sprinted but he ran a personal best of 2:08. Mum and I were so proud of him and he was really pleased with his results and is looking forward to what he hopes will be a really successful season. He will now compete at ACT Championships in November and I will be there competing also because as an AWDASC that Jarrett was at does not have AWD athletes competing.

I had physiotherapy this week, my knee has been giving me some trouble, it has been quite painful and is swelling. Rhiannon worked on it, as well as my calves, quadriceps, neck and shoulders. She taped my knee for me to take some of the pressure of it. Then she told me some totally devastating news that she is leaving at the end of November. She has been such an extraordinary physiotherapist and I don't know what I am going to do without her, she has made such a difference to my life, in fact when I got home I cried.

Today I was given a special ribbon from the Athletics Carnival, I came fourth in my age group in the Carnival, that is against able bodied athletes, that was a huge achievement and I was so surprised.

School holidays will be a time for me to regain my strength and energy ready for the last term at school which I am sure will be a very busy one. It is Mum's Birthday next Friday, I am hoping to make a special Brithday cake for her. It will also be so wonderful to spend time with Nalani and Jarrett.

'Happiness is a wonderful feeling, it is like a warm, loving embrace from your Mum'

I wish everyone happiness throughout the coming week.

MEETING AN INSPIRATIONAL PERSON

2011-09-23T20:04:00.001+10:00

17th to 23rd September 2011

Many people have said that I am inspirational, which I feel so humbled by, but on the weekend I was fortunate enough to meet a girl who I feel is truly inspirational. Her name is Mez and she is a gymnast, she has been training since she was five, in August, 2010, she received some of the best news she had heard in a long time. Despite having been out of competition due to injuries for most the year, at National Championships she made an incredible comeback and was selected on the Commonwealth Games team. Then tragedy struck in the form of a freak bad landing during training caused a serious ankle injury which took her out of the sport for months and meant she could not go to the Commonwealth Games. It would have been so devastating for her but she had a positive attitude and courage and fought back. Watching her compete at the trials at the AIS for a position on the team to go to World's in Tokyo was so inspiring, to be able to come back from such a terrible injury and perform the jumps, vaults, routines and bars was just incredible. After the competition I got to spend a short amount of time talking to her and was amazed by the amount of training that she has to do and how dedicated she is. I have included a photograph of Mez and I on this Blog and would like to share some exciting news with you, to let you know that she made the team to go to Worlds. I know that with her positive attitude, determination and courage she will perform extraordinarily well.

School this week has been busy, in Maths we are working on rates and ratios, it is very different from Algebra. In English we have finished off our work on The Boy in the Striped Pyjamas and are now looking at Empire of the Sun. In textiles I finished off my design for my embroidery and traced it onto my piece of calico, the next step is to start the embroidery. Next week is our last week for Term Three and then we will have two weeks holidays.

Wednesday was our Athletics Carnival which had been postponed last Friday because of the chemical fire at Mitchell. The sun was shining however the winds were rather gusty, I felt rather nervous as I was going to attempt to stand for my throwing events. My first event was Javelin, I throw a 400g javelin, we were given two throws, my first one was a foul and I toppled as I had not balanced myself properly, however on my second throw I threw 3.88m. Then it was on to shot put, in this event I had three throws, each time I threw it went further and I ended up throwing the 2kg shot put 2.03m. My last event was discus, before my tumour I was good at discus and had represented my Little Athletics Club at Regionals. Again I had three throws, each throw went further and I ended up throwing it 5.11m. I was so excited with all my results and hope to be able to compete in more athletics field events at Interclub during the summer season. The day had been terrific but left me extremely exhausted.

Jarrett also did extremely well, in the 1500m he ran like a bolt of lightning, lapping many runners and winning easily. Then in the 800m he also won breaking the existing school record by fifteen seconds and in the 400m he also won and again broke the school record. He also ran in the 100m coming 2nd in his heat and 4th in the 200m. He will now compete at ASC Zone Championships next week, I know that he will do exceedingly well.

Nalani did some running as well as field events, in the 100m she came 7th, in the 200m 4th, 4th in the discus and is not sure where she came in the shot put and javelin. She was also part of the 100m relay team for our house Guraguma and the team came third. She was so excited that she had competed and done so well considering last year she could not compete because of her knee injury.

All the winds that we have been experiencing in Canberra have not been favourable for people with allergies with many pollens blowing around menacingly in the air. I have not escaped getting hayfever with sneezing, watery eyes, snuffly nose and an annoying cough.

Today I went to the nutritionist who was exceptionally helpful, she was able to put together a diet that is suitable to assist my high cholesterol, I have to cut out full cream dairy products and also cut out food from animals. She also feels that I may have irritable bowel syndrome, an inflammatory bowel disease or intolerance's or allergies to certain foods, food additives and colourings. I have to follow a two week elimination diet, then go back to her in four weeks time to discuss what happened with my stomach and bowel whilst I was on it. She will then decide where to go from there.

Mum and Dad's teams play in the Rugby League tonight for a place in the Grand Final next weekend. I still wish that the Tigers had made it and feel they were extremely unlucky to have missed out but as my book title says 'You have to go through a storm to get to a Rainbow' I am hoping that next year the Tigers will see their rainbow.

Wishing everyone a splendiferous week filled with many joys and inspirations to help you stay positive and reach your goals.

A CHEMICAL FIRE AND EXPLOSION IN CANBERRA

2011-09-16T16:20:00.002+10:00

10th to 16th September 2011

This morning we woke to the news that there had been huge explosions and fireballs from a factory fire in Mitchell in the early hours of the morning. There were fears that a spread of toxic smoke plumes could cause illness and all residents within a ten kilometer radius were told to remain indoors. School was cancelled for the day, so that meant that our Athletics Carnival had to be postpone. As we looked out of our lounge room window we could clearly see the inferno of thick, black billowing smoke rising from the fire and spreading across the morning sky. In the early hours of the morning we had heard loud bangs that shook the windows, sirens and then our mobile phones beeped with messages, telling us there was a chemical fire and for people in certain suburbs to stay indoors. The firefighters are still battling the fire, using lots of foam, they are hoping it will be distinguished by tomorrow however they are warning that there could be further explosions. I don't think we have ever had anything like this happen in Canberra before and they are still worried about toxic fumes so are monitoring them and still advising residents to remain indoors.

At school this week I had a Maths test, finished off all my work on The Boy in the Striped Pyjamas for English, began a new project for Textiles we are doing some hand embroidery, we have to draw a design that is 20cm by 20cm and include at least three different types of stitches, I have done a design with a sun, a rainbow and three butterflies, I was thinking of doing cross stitch, back stitch, running stitch and satin stitch, I think it will terrific when it is finished. In Science we are continuing with work on chemical equations which can be quite challenging for me.

Unfortunately I had two minor seizures this week, it happened after my Maths test, my arm felt heavy then I felt strange and next thing I knew my right arm had dropped, was painful and my hand and arm tingled. The second one occurred when I was at home. I felt so tired after having them and also had a headache but it disappeared after a couple of hours. My arm took much longer to come back, two days later my feeling had returned however it was still rather weak. I was devastated because our Athletics Carnival was supposed to be today and I knew with my hand weakened I would not be able to throw as well and I was so determined to do well and had trained for it. I guess it was lucky that the Chemical Fire happened because it gives my arm more time to heal.

I had physiotherapy yesterday and Rhiannon was able to release the tightness that had formed in my arm, hand and neck from the seizures. Again she was able to provide me with some relief, she truly is my guardian angel. My stress fracture in my heel has now fully healed so I can now begin to put more weight onto it and begin my walking with my rollator again. It will take a little while to build back up to where I was prior to the stress fracture but I will get there. I think that challenges are sometimes placed in our way to make us stronger and more determined.

Spring is definitely in the air, so many flowers are starting to bloom and provide a kaleidoscope of colour to the garden. The roses are now covered with leaves, the grass is starting to grow again, the magpies are swooping and tiny pollens are being carried through the air by the strong, gusty winds we have had. That is not good for people who suffer from season hayfever, Jarrett is one of them and he has been sneezing and coughing despite taking antihistamines daily, once they pollens decrease so will his hayfever.

Nalani is continuing to make a comeback with her running and is finding that with her knee in the correct place the muscles are all reacting, so they are sometimes becoming a little sore and tight but it is a good soreness and tightness because everything is working again.

We only have two more weeks of school and then we will be on school holidays and then only have one more Term at school. That will be a huge Term for Nalani, it is her last Term at school and then she will graduate from Year 12. It is also my last Term in Middle School because next year when I am in Year 9 that is the first year of Senior School at our school.

The Wests Tigers are playing the Warriors tonight, I have my fingers and toes crossed that they will continue their splendiferous form and win. They played so well last week against the Dragons and showed that they are a threat to win the competition this year.

'Every day brings new possibilities, new challenges and new hope we should always start each day by looking ahead with optimism and a smile on our face.'

NOT WELL THIS WEEK

2011-09-09T18:29:00.000+10:00

3rd to 9th September 2011

What a glorious weekend it was for all the Dad's for Father's Day, the sun shone brightly in the crystal clear blue sky and only fluffy cotton wool like clouds drifted delicately and lazily through that sky. Dad was greeted when he awoke to a steaming hot cup of coffee and toast with his favourite jam. He loved all the gifts that we gave him and adored the poem I wrote for him. He has taken it to keep with him at work so my words are with him while he is there. Jarrett had running training so we went for a leisurely stroll around the perimeter of the AIS taking in all the delightful sounds and colours of the bush. We then took Dad to DFO for lunch, it was a much quieter place to go than to any of the major shopping centres. He had a splendiferous day and felt very spoilt.

I was not feeling too well over the weekend, I was very flushed in the cheeks, had headaches, a slight fever and my gums at the top of my mouth were throbbing with pain. It turned out that I am getting my twelve year old molars, they are a little late arriving because of the treatment I have had for my tumour. As they came through more throughout the week, my fever rose, I found I was even dribbling at times, my cheeks burnt and I had an upset stomach. My bottom ones came through earlier this year but I did not have any difficulties with them, this is so very painful, now I can understand why babies are so miserable when they are teething it is definitely an extremely painful experience.

As a consequence of my teeth coming through and the problems they caused I did not go to school this week, however I did continue on some school work that I already had, that is when I felt well enough to. I finished off all my questions for The Boy in the Striped Pyjamas including a creative task and an alternative ending. I also worked on Maths, we are now moving on to ratios, they are very easy to understand and do and I did my Mathletics activities which were on expanding and factorising algebra.

Running a temperature made me feel tired, so I also needed to sleep which eased the pain in my mouth and my headaches. Yesterday I had a rash on my cheeks, they are normally so smooth and soft but they were rough and itchy. Some eczema cream eased the itchiness and when I woke up this morning the rash had disappeared.

Great news - I won the footy tips again this year, that is three years in a row. Nana and Pop will have to study up on the teams for next year and then maybe they may have a chance of winning. I am looking forward to the Tigers game tonight, I believe that they have the determination, team spirit and skills to beat the Dragons and go on to play again next week. I was disappointed though that Benji Marshall did not win the Dally M Medal, I truly thought that he was the best player out of all teams this year, he put his heart and soul into each and every game and produced some real Benji magic.

Next week is the Athletics Carnival on Friday, I am hoping that I will be well and that the weather will be perfect for it. With my T/F36 classification I will throw a discus that weighs 750g, a shot put that weighs 2kg and a javelin that weighs 400g. I am hoping that I will throw much further than I did last year. This year I am also going to compete in some Interclub Competitions, being able to participate in activities that I used to do before my journey with my tumour began is a goal and I am determined to make it happen. Running is going to be a longer term goal but I hope that that will happen one day also.

I am still awaiting some of my test results from Sydney, perhaps we will hear something next week. Some marvellous news that we did receive this week was that my lumbar puncture was clear, there were no cancer cells in my spinal fluid.

I hope that those who have footy teams in the finals have wins and I wish you all a marvellous week ahead filled with many rainbow moments.

SPRING BEGINS

2011-09-02T16:21:00.003+10:00

27th August to 2nd September 2011

'See everything as beautiful, sometimes it shines out at us but other times it is hidden, we may find it in nature, a piece of furniture, an artwork, in friendships or shinning out from a total stranger'

This week has been much quieter and not nearly as exciting as last week. At school we have continued answering questions on The Boy in the Striped Pyjamas in English, it is such a powerful and emotional story with such a tragic ending. In Maths our unit on algebra is coming to an end with a test next Monday, in Textiles I have continued my cross stitch work which we will complete the unit on next week also and in Science we are still looking at the periodic table.

Jarrett is back at running training again after a short break and it has provided me with the opportunity to practise my throwing. I am able to stand to throw, however I have to watch how far apart I have my legs because if they are too far apart then I off balance dreadfully and almost fall. I think that I will be able to throw the shot put, discus and javelin further than last year when I had to throw from my wheelchair. Being able to participate in the Athletics Carnival is so important to me, it was something that I loved to do prior to been diagnosed with cancer.

I had to have an ultrasound, an ultrasound is used to demonstrate internal body structures, ultrasound scans work by sending out high frequency sound waves and recording the reflected sound or 'echoes' to create an image, my ultrasounds were on my pelvis and abdomen this week they are looking for answers from some of the results from other tests that have been abnormal. For the pelvic ultrasound I had to empty my bladder and then drink 600ml of water in one go and then keep that in, it became quite uncomfortable when they were running the ultrasound scanner over my pelvic area, it also tickled a little and I was relieved when they let me let a little out. For the abdominal one I had to fast for six hours before the test. The pelvis ultrasound showed that I have little cysts on my uterus, which often burst and then that is a likely cause of the free fluid that showed in my pelvis in the MRI, these have to be watched in the future. My abdomen one showed that my right kidney is much smaller than my left and that it has been damaged from the chemotherapy, this is something that I was already aware of and my kidney is only functioning at 75%. My cholesterol has also gone up, so I have to see a dietician to organise a low fat, low cholesterol diet to see if that makes any difference. The problem with high cholesterol is that if it is not controlled then it can lead to other serious health issues.

This week I also had a physiotherapy appointment with Rhiannon, she worked on my right side as I had been having pain in my knee, hip, heel, arm and hand. My arm was partly due to my throwing and partly due to having a little seizure the day before and my hand was from the seizure, it had tightened as it always does when I have one. Rhiannon is always able to provide me with relief from my muscular aches and pains, if it wasn't for her I would suffer with pain and tightness that would impede on my daily life.

In the Footy Tips I am still winning against Nana and Pop and unless I have an absolutely dreadful week and get them all wrong I will win this year. The Wests Tigers are simply splendiferous, being in fourth place on the ladder now is so wonderful, I truly think that we have a chance of making the Grand Final.

I wish all the Dad's a very Happy Father's Day for Sunday, Dad's make you laugh, give the most enormous, warm hugs and protect you from harm. I have written my Dad an extra special poem and framed it as well as making him a card, I hope that he will like them.

Thank you for the prayers for the people that I mention, good news on Stuart is that he does not have to have surgery just yet as the tumour is small, it will be monitored and may need surgery later. To any of my followers who are going through a difficult time or have any injuries or illnesses my prayers are with you.

A BRONZE MEDAL

2011-08-26T15:01:00.001+10:00

20th to 26th August 2011

Saturday was the Australian Cross Country Championships, Canberra weather did not improve too much for the event as it was still wintry with rather arctic winds however the rain did hold off although the clouds did look extremely ominous. Jarrett's 6km race for the 16/17 year boys was at lunch time, we were all so very excited to have him racing on home turf this year. In a huge field of over one hundred Jarrett looked so tiny but he has a huge heart and enormous determination so size does not really matter. The first lap was the 1km loop and it was at a lightning pace, then the next two laps were of the 2.5km loop. Jarrett ran his own race and ran it well, he had to use his asthma puffer three times during the race just to prevent a repeat of last years attack. He made his way up the field, had a look of pure courage on his face and came 20th in his age group, 40th overall and in a time of 19:51, a twenty nine second personal best. He had gone into the race with a goal of coming in the top 20 for his age group and running under twenty minutes. We were all so proud of him and although he was exhausted at the end of the race, he managed a dazzling smile. Congratulations to all the boys in that age group, they all ran extraordinary races.

On the Sunday Jarrett had a team excursion to the AIS where he went on a tour and then went into the interactive sports area called Sportex. Then the team and families had lunch at the AIS meal hall where all the athletes have their meals. The food was incredibly delicious and healthy, that must be why so many of our athletes are performing so well, the food they get to eat everyday.

Monday was the relay day, each State enters a team of its top five runners who in Jarrett's age group each have to run 3km. The race was on the criterium bike course at Stromlo, that meant it was on an asphalt surface, which is quite hard on your legs. Jarrett's legs were tired from his race on Saturday but he was fortunate enough to have physiotherapy early in the morning so his muscles were loose which meant that running on the asphalt was a little easier. He was the fourth runner, he took off, he put everything he had into his run and was excited to run an amazingly fast time of 8:43 for the 3km, another huge personal best. When the last runner finished the whole team had run splendiferously and they won the bronze medal for the relay. As I took photographs of the medal presentation, I was so proud to see Jarrett with the rest of the ACT team smiling, that smile still has not left his face and he wore that medal around his neck until bed time that night. He even let me wear it, it is his first ever Nationals medal and to win it at home was extra special for him.

After all the excitement of the Cross Country it was then back to school for the rest of the week, I think it was quite an anti-climax for us all. In Science we did crosswords about chemistry and a periodic table bingo game. In English we are doing work on The Boy with the Striped Pyjamas, in Maths we are still working on algebra, there are so many different areas to learn, our main work in algebra this week was on factorising and expanding. In Textiles I finished my cross stitch bookmark and I have now begun work on a butterfly design for a greeting card.

On Thursday I visited Sarah, we have been trying to catch up for ages, she is working on a new project to try to get politicians behind the effort to get brain tumour co-ordinators for brain tumour patients and their families, many countries overseas have them and they make a huge difference to everyday life for the people they work with, there is some information about them on Sarah's website which I put on my Blog last week.

I finished off my latch hook picture as you can see from the photograph I have placed on this Blog entry, they are so much fun to do and I think you will agree they look fantastic. I have now begun on another one, working on them has given me an idea that they could make terrific gifts as well as I could perhaps make some and sell them to raise money for the Brain Tumour Fund. Those five cent pieces are building up and I think it will be so wonderful at Christmas time to send a cheque to the Sydney Children's Hospital Foundation Brain Tumour Fund to help towards research for a cure for Brain Tumours. Thank you to those people who follow my Blog who have said they are saving their five cent coins also, I think the Foundation will be so pleased to receive that special donation at Christmas.

The weather has improved immensely from last week and I actually think that Spring is just around the corner, when we are driving to school the streets are now lined with trees with delicate pink or white blossoms on them and the other day I even saw a few butterflies, flitting about so gracefully in the crystal clear blue sky.

I have a doctors appointment this afternoon, some results are back from my latest tests, apparently from the results some more tests need to be organised. I still have no results back from my lumbar puncture or my neuropsychological test as yet.

This week Stuart received some disappointing news, that he has a new tumour growing and will have to have it removed, so it would be lovely if you could pray for him and his wife Meryl during this difficult time. Also prayers for Tia and her family, she is the mother of a student in my grade and she lost her battle with cancer on Tuesday.

Today is Daffodil Day, I hope that they are able to raise money to help find new treatments and cures for the many cancers that affect so many people in so many ways, it is such a cruel disease, I know because I am living with it each and every day of my life.

A QUIETER WEEK

2011-08-19T18:03:00.000+10:00

13th to 19th August 2011

As I type this post, the winds outside are powerful and ever so arctic, they are rattling the doors and windows, as they blow they are whistling with a high pitch sound that makes you cringe and rain which is more like sleet is falling from the grey skies. We were out in the weather all rugged up for the opening ceremony of The Australian Cross Country Championships at Stromlo. Although the weather is so bleak and miserable I had a smile on my face and felt so very proud as I watched Jarrett in his ACT School Sport Uniform during the ceremony. Athletes who make it to that level truly love their chosen sport and show amazing dedication and skills. Tomorrow is Jarrett's race, he is really excited about it and is hoping for a personal best time, I think he really deserves to do well.

We have had miserable weather for the entire week with two inches of rain falling in just the past day. At School in English I am now reading the novel The Boy in the Striped Pyjamas, we are still continuing to do algebra in Maths, in Science we are continuing our work on Chemical and Physical Reactions. In Textiles I have begun a cross stitch bookmark which has my name on it. In World Studies we have an assignment and I have chosen to do research on Child Poverty in the Developing World. It is hard to believe that next week we will be half way through this Term, time just flies.

I saw Rhiannon for physiotherapy, as usual she was able to provide me with some relief from stiffness and pain I have been experiencing. She worked on my neck and shoulders, knee, foot and hamstrings then she gave me some more exercises to help strengthen my upper body in preparation for the athletics carnival which is on 16th September, I am hoping to compete in all the throwing events and by strengthening my upper body I will be able to throw the discus, shot put and javelin further.

Nalani has had so many assignments over the past week I feel so sorry for her, she works extremely hard on all her work. With all the school work she has, it has been difficult for her to continue her rehabilitation on her knee but today at the opening ceremony she went for a jog on the course and she was so thrilled when she was not limping.

I have nearly finished my latch hook craft, when it is completed I will take a photograph and post it on my Blog. In the footy tips I am still winning, Nana is five points behind me and poor Pop is twelve points behind me. I am hoping that the West Tigers continue to play well this weekend.

Sarah who is a very inspirational lady, who I have mentioned before on my Blog has a website which tells all about her journey it is http://www.sarahmamalai.com/, her story is truly extraordinary and provides hope and inspiration for many people you may like to look at it.

Today I saw two beautiful rainbows in the sky, I hope that they will bring all those people who are going through a difficult time or just feeling blue some happiness and hope throughout the coming week.

A TIRING WEEK IN SYDNEY

2011-08-13T13:55:00.000+10:00

6th to 12th August 2011

Some people dwell on the negatives in their life, this only weighs them down, I like to look on the positive side, to see the light rather than the dark side. By looking at everything in a positive way it can empower you to overcome the challenges that are thrown your way.

We had a dreadfully wet Saturday, with puddles rippling as the heavy rain drops fell into them. We were at Stromlo for a Cross Country Race for Jarrett.  We found some shelter but Jarrett had to do his warm up and came back with soaking wet hair and clothes.  As it drew closer to the race, thicker, heavier clouds moved across the already dismal grey skies and then the rain poured down.  The race began, the course was not too slushy for the runners and they took off at a lightening speed, the pace remained fast with the front group taking a comfortable lead from the rest of the field, Jarrett was one of them. It was a 3km and as the runners came round for their second of the 1.5km laps they were truly flying. The rain did not ease at all during the race and neither did the pace, Jarrett finished fourth, he ran an amazing personal best time of 9:07 for 3km, his previous best for Cross Country was 9:35. He was really pleased with his time and was even happier that despite the bleak weather conditions his asthma was well controlled.  I am always so proud of Jarrett when he runs, he is now tapering ready for National Cross Country which is on 20th August and I will be there cheering him on as loudly and proudly as possible.

Sunday after a walk around the AIS whilst Jarrett was training, Mum and I finished our packing ready to leave for Sydney. I had a long week of tests and appointments to face, it is always so very tiring and means that Mum and I have to spend time away from the others during that time as well as time off school. The trip to Sydney is short, the longest part is having to arrive at the airport an hour before the flight. We touched down in a sunny Sydney, we were the last to leave the aircraft because they have to get my wheelchair for me. We headed to the lift so we could go and get our baggage, we waited and waited and waited for the lift with another lady with a pram, but it did not come. So a Virgin Australia staff member found out the lift had broken down, the only other way down to the baggage area was down the step escalator, so Mum held me, one Virgin staff member took our hand luggage whilst another took my wheelchair down, we must have looked a sight. Then they helped us get our baggage and escorted us all the way to a taxi, they kept apologising for the inconvenience. It is interesting that at an airport when the lift breaks down there is not a better alternative.

Our week was filled with appointments and tests, unfortunately we did not have any time for pleasure, although we did manage to sneak in a walk along Coogee beach to watch the waves come crashing in, all white and frothy as they hit the sand. I had a blood test, which was followed by my MRI, they decided to put the cannula into my left hand as my right arm vein had been used so much, however even though they thought it had gone into my vein, it had not because when they put a flush through it, it leaked out and my hand all puffed up from the fluid. So they went for the right arm vein again, it went in easily with no problems at all. I went into the MRI room, was all lined up properly, had ear plugs put in and all secured, Theodore once again came with me, he lay on my stomach throughout the whole time and of course Mum was there too as always. During an MRI you have to lie extremely still, I have learnt to just drift off and relax, it can be difficult for some people and even some adults have to be put under anaesthetic when they have one. Half way through the MRI they come in and put contrast into the cannula then they take more images. This time my MRI went for longer, I had to lie still there for almost two hours, at the end when I sat up they told me I was a perfect patient and they were amazed that I could stay that still for so long. I think part of my secret is that I have a good scratch and shake before I go in and I try to relax during the procedure.

My next appointment was Oncology Clinic, you get weighed and measured and they ask you several questions about how everything is going. Then they do some neurological tests, test reflexes and other general functions. I was told some preliminary results from my MRI, it showed that I have a moderate diffuse enlargement of the ventricles and of the extra-axial CSF spaces, these have remained stable from the last MRI, there is post surgical enlargement and distortion of the fourth ventricle and gliosis surrounding the posterior fossa and there is diffuse high signal on my vertebrae from radiotherapy. The residual tumour has thickened from the last MRI but is still stable at present and in a new finding there is an amount of fluid leaking into pelvis. When the final report comes through further investigations need to be done but they will be able to done in Canberra.

I had to have another lumbar puncture which means a day in Hospital, before a lumbar puncture you have to fast because for children it is done under a general anaesthetic. It was a busy day on the ward and I had to wait much longer than usual for my lumbar puncture. While I was waiting I did some work on my latch hook craft, everyone on the ward was fascinated by it and thought it looks like lots of fun to make and also looks terrific. It was after five before I was taken in to theatre for the lumbar puncture, it turned out that I was last on the list for that day. As the anesthetist put the mask over my face, he asked me to tell him a joke, I could not think of any then he asked me to sing a song by my favourite band, so I started singing 'Princess' by Short Stack but ended up giggling from the gas they use in the mask. The next thing I knew it was all over and I was in recovery. I was taken back to the ward and there was Mum waiting there for me with an apple juice and two delicious looking cupcakes. I was so hungry as I had been fasting for so long, we had to wait until six thirty before we could leave the hospital as they have to make sure all your observations are fine before they let you go. It was such a long and tiring day and the next day I had my neuropsychological testing.

The neuropsychological test is an intense one that is extremely fatiguing. Firstly we had to fill in some paperwork and answer questions then the neuropsychologist talked to Mum and I. I have to do these tests because the high doses of radiotherapy that I had can cause neuropsychological difficulties. I already notice these when I am at school in the areas of processing, memory and concentration. Firstly in the test I had to write my name and draw a picture, then I did some pattern matching, working out what was missing from a picture and each time it became more difficult, I was given a word and I had to chose a word that had a similar meaning, then the neuropsychologist read out numbers and I had to try to remember them and repeat them and the last test in this section was following given numbers and letters. I was then given a break to have a drink and go to the toilet, I was so tired I just wanted to go and have a sleep. There was still more testing to do though, so a twenty minute break was all I got. On returning I had to make a pattern with blocks that matched a picture I was shown, then I had to copy drawings and then do them by memory, I could feel my eyes flickering like crazy, my nystagmus does that when I am tired. More memory testing was next as she read a list of words and I had to repeat them from memory at the end of the list, the lists became more difficult and it was just too hard for me.  We went back to drawings again and then more word lists. I was given another break for twenty minutes again for food and drink. I was then on the final lot of tests, I was given a letter and had to come up with words, I was given certain topics for the words that I had to come up with. Because I had had the lumbar puncture the day before and anaesthetic stays in your system for forty eight hours afterwards the neuropsychologist could see that I just could not do anymore so decided to stop the testing. She is going to write a report and send it to us within the next few weeks, she did say though that she could see that I had difficulties with concentration and memory. It had been a long, long day the testing had gone for almost five hours. When we went back to the hotel I had a lovely relaxing bath and nearly fell asleep in the bath, after I was dried I lay down on the soft bed and did fall asleep, I did not wake up until dinner time.

I was supposed to see the neurologist but they were unwell so that appointment was cancelled which was a relief because my body and mind were exhausted from so many really hectic and demanding days. I was able to have dinner with Tess, who was my Starlight wish granter, it was so wonderful to see her and catch up on all her news, she is a special person in my life.

It was raining in Sydney yesterday and exceptionally windy, it actually reminded me more of Canberra. The hotel staff told us that the week before they had temperatures of twenty four degrees and dolphins had been frolicking in the ocean. Yesterday there were sirens on the beach, they were shark alerts, no one was in the water at the time, it was too wet and cold.

I always think that there is no place like home and being away from home makes you appreciate it even more. I will find out more results throughout the coming weeks, I will also find out what extra tests and procedures I have to have. As I said in the beginning of this Blog I try to always be positive and even though my preliminary MRI result has shown increased enlargement of the residual tumour and fluid leaking into my pelvis the word stable is always comforting to me.

It was stupendous to read in last weeks comments that Ruby, who I met in hospital last year decided to raise money for the Sydney Children's Hospital Foundation Brain Tumour Fund after reading my story, if every young person in Australia was as thoughtful as her imagine what a difference we could make. I continue to save all those five cent pieces ready to make a large donation at Christmas time. I also believe that Dr Teo is now going to focus much of the funds that Cure 4 Life raise to help his research to find a cure for brain tumours, he is such a compassionate and caring doctor, I hope that the money he raises will help him find a cure.

How about my West Tigers, they are splendiferous, five wins in a row and against some of the top teams, I have a feeling that they may pull off a miracle and take out this years premiership that would be a definite rainbow moment for me.

Next weekend I will be cheering Jarrett on at Cross Country Nationals and also praying that he does not have any breathing difficulties, he trains so assiduously and always shows such courage and good sportsmanship, I think he is an inspiration.

Take care everyone and remember to find the positives in your lives because it will make a comprehensive difference to your day.

SCHOOL AND APPOINTMENTS

2011-08-05T17:39:00.001+10:00

30th July to 5th August 2011

Another week has come and gone, the weeks go so quickly, before we know it, it will be Christmas time. In a lifetime everyone has a dream or goal they would like to achieve. I have been watching MasterChef on television and many of the contestants have spoken about realising dreams. I think that if you picture yourself achieving your special dream or goal, if you really place yourself in that picture, think and hope deeply, take positive action then you will be surprised to find how your visualisation can become a reality.

I found a wonderful new craft activity on the weekend, it is called latch hook craft, you use a piece of canvas with a printed illustration on it, have coloured wool that matches the colours of the illustration, then you have a tool called a latch hook, using that latch hook you pull the wool through each hole. When it is finished you can make a cushion, wall hanging or rug from it, they really look amazing. You need patience and time but when you finish it you have something to be proud of. The one that I got was a pattern of a sun and a rainbow, I will be taking it to Sydney with me to help the time I have to spend in hospital and at appointments more bearable.

At School this week I have continued with algebra in Maths looking at positive and negative number substitutions, today in English we finished reading and listening to The Merchant of Venice, in Science we are continuing worksheets on Chemical and Physical Reactions, in Textiles we are working on a design for a calico bag that will hold our work and in Christian Living we learnt about the music within us and how having a positive attitude can change the outcome of an event.

On Wednesday I had appointments at Canberra Hospital, firstly I saw the Cardiologist who did an echo cardiogram on my heart. Often when you have chemotherapy it can affect your heart, fortunately my chemotherapy did not cause too many problems in the area of my heart, although my heart beat has become irregular and my heart is a little smaller than average it appears to be healthy at this stage, which is terrific news.

Then I had to see the Endocrinologist, that is when I did not receive the greatest news, my cholesterol remains high and this is of concern to him, I have to be put on a low fat diet and be monitored closely, if there is no improvement with diet then they will look at medication but because the high cholesterol is caused by the treatment there is no guarantee that the medication will work. It has also been confirmed that I have insulin resistance which is the early stages of type 2 diabetes, this has to be watched and treated also. My thyroid appears to not be functioning correctly either and there has been a drop in my thyroid function test. He ordered a new blood test for that and if it has dropped again, I will need to have further tests done for this.

We had to fill in all the paper work to apply for me to be able to have the Growth Hormone injections, it can take approximately two months for approval, that works out because when you have had a brain tumour and the treatment for it you can not have growth hormones until two years after completion of treatment and that will be on 17th November this year. I will have an injection every day, there were various types and brands but the one best suited to me was an injection with no preservatives in it. Once I start having the injections which will initially be at a high dose, my legs will begin to grow, they are hoping that in the first twelve months I will grow five centimetres. I have been told before that only my legs will grow, my spine will never grow because of the high doses of radiation I had. There are side effects from the injections and that is that in the first three to six months whilst I am on them that I will experience severe pain in my bones and muscles as they grow, I will require pain killers and physiotherapy to assist this side effect.

The Endocrinologist also told me that the period two years to five years post treatment is when recurrent tumours occur and if the remaining tumour grows or new tumours appear I have to be taken immediately off the growth hormone treatment. The Endocrinologist also sent me for several blood tests for some painful symptoms I have been having, he is checking out lactose intolerance, heliobactor, crohns disease and coeliacs disease.

Today I had physiotherapy with Rhiannon, she worked on my neck which has been sore and tight, it was so tight it was making my head tilt to the side. She then worked on my still repairing heel, my calves and hamstrings. Rhiannon has put so much time and effort into my rehabilitation and I feel so blessed to have her.

Mum and I leave on Sunday for a busy week in Sydney, I have so many appointments and tests, we are going to be near the beach but unfortunately won't get much time to enjoy it, I have also checked out the weather forecast and it looks rather gloomy with rain and winds predicted the whole time we are there.

Jarrett is running in a 3km race this weekend then his training tapers because on Saturday it is only two weeks until Cross Country Nationals. We are all very excited, we are all hoping that this Nationals will be better than last year for him, when he had his severe asthma attack.

Nalani continues to do well with her rehabilitation for her knee, she is still going to the gym and has begun running again. She is extremely busy at School, she has four assignments at the moment all due in two weeks, as well as she is looking at options for further education next year. She wants to do study in the area of sport, either massage, fitness, exercise science and coaching or sport management. It is a very exciting time for her making all these decisions.

Many people comment on the wigs that I wear, some people have even thought that it is my real hair. Although it would be nice to have real hair, I do have some but it is so sparse and patchy I feel that I am fortunate that you can get such lovely wigs, I can have a new look, style and colour every day, not many people can do that. I have purchased many of my gorgeous wigs from a place called Play With Hair, they are an online company and their web address is http://www.playwithhair.com/, you should see all the different wigs they have, you may recognise some of the ones that I have worn in photographs and on television. Having acess to lovely wigs is important for many people, especially teenagers and women living with cancer because a wig can make them feel more confident and beautiful when they are going through such a difficult time in their lives.

Keep following all your dreams, never give up on them or yourself and one day you will find that your vision becomes a reality.

BACK TO SCHOOL FOR TERM THREE

2011-07-30T15:24:00.000+10:00

23rd to 29th July 2011

On the weekend I felt a little anxious about returning to school for term three, so I was pleased to have a few distractions to take my mind off my worries. We had running training on both Saturday and Sunday, I made the most delectable strawberry cupcakes with strawberry icing and sprinkles on top and I had a special visit from Heather and her mum Carole. Heather had Medulloblastoma when she was six and this year she turns twenty six, so she is a twenty year survivor. Her Medulloblastoma was very different to mine because it was growing upside down and was slower growing and it had not spread at all. She had surgery and radiotherapy only as her treatment. I found her visit to be very inspiring for me as she is one of the longest survivors of the disease.

With butterflies in my stomach I returned to school on Monday for a brand new term, it felt like we have not had a break because we were back into work. In Maths our new unit of work is Algebra, I really enjoy Algebra, in English we are continuing looking at Shakespeare works and we are reading through and listening to The Merchant of Venice which is like an olden day Neighbours or Home and Away with the many different story lines. I have new electives this Semester, they are Textiles and Music, I am very excited about Textiles because I have a flair for arts and crafts. In Integrated Studies our topic is Human Impact on the Global Environment and Science we are looking at Chemical and Physical Properties. Something sensational we are doing is our Athletics Carnival in September, I am very eager to participate in at least the field events and because I have the disability classification I hopefully can represent the school as a disabled athlete at Zones. After a tiring week at school I was euphoric that the first week of school was over!

This weekend it is only three weeks until Cross Country Nationals, Jarrett has recovered from all his illnesses and has been able to train at full capacity. Nalani has continued her progress and is increasing the amount of training she is doing, she is hoping to compete at the Athletics Carnival, I think she will be able to achieve that goal.

It was very inspirational to see Cadel Evans win the Tour de France, he has faced much adversity, in the form of injury, mechanical problems and self doubt, his dedication, determination and courage is a superlative example to us all.

Canberra had its coldest overnight temperature for July since 1994, it was minus nine degrees, the ice was thick on the ground and chilled everyone to the bones. However we have had some delightful days filled with golden sunshine and crystal clear blue skies, there are even some trees beginning to bloom with delicate pink blossoms. Golden yellow wattle flowers are also starting to bloom ready for Wattle Day on the first of September.

My Tigers had a magnificent game last night, coming from certain defeat against Manly (my Mum's team) to be victorious by two points, I was elated! Poor Nana and Pop tipped Manly to win so that's one game up to me.

Next week on Wednesday I have to go to Hospital to see my Cardiologist and Endocrinologist then on Sunday Mum and I are off to Sydney for more appointments and tests. I hope everyone has a splendiferous week filled with many rainbows.

THE FINAL WEEK OF THE SCHOOL HOLIDAYS

2011-07-22T20:10:00.002+10:00

16th to 22nd July 2011

'Those who succeed are not necessarily the most gifted, they are the ones who never give in, no matter what the obstacle, opposition, how long it takes they find the inspiration and perseverance to see things through'

This has been another quiet week with a variety of weather conditions raging from heavy rain, icy gale force winds and some beautiful sunshine. I have had some obstacles this week with pain and a locking knee, however I always try to look on the bright side each and everyday.

Some of the activities I have done this week are playing Upwords, doing sudoku puzzles, find a words, decoupage, reading and watching movies. On Wednesday we went to the hairdressers, as you all know because of the high doses of radiotherapy I had there are many areas of my head that are bald, where hair has grown it is thin, wispy and ratty so the hairdresser and I decided to cut it all very short hoping it will grow back more evenly. Luckily I have my glamorous collection of wigs, which means that I can have a different style, length and colour everyday, I bet lots of people would love to be able to do that!

On Friday I had my physiotherapy appointment with Rhiannon, she checked my heel and gave me the fantastic news that I can now put more weight on it as it is just about healed. She also did some work on my right knee that keeps locking up and she taped it for extra support. The new tape she uses is terrific for my sensitive skin and means I can keep the tape on longer so it helps more. I see Rhiannon again in two weeks which is just before I have to go to Sydney again. Everyday I do my physio exercises, ride the exercise bike and do arm weights, these help me to become stronger and will contribute to assist me to reach my goal of being able to run again.

Fran mentioned a little boy her sister teaches who has just been diagnosed with a brain tumour, since I found out I have one I have been passionate about raising awareness and funds for brain tumours. Every year around 1,400 new cases of primary (malignant) brain tumours occur in Australia , including 100 in children.

This number excludes an estimated 2,000 benign brain tumours that may cause disability or (rarely) death. Brain tumours are the second highest cause of death for children aged 0 – 14 years from all causes – second only to accidental drowning and the highest cause of death in this age group from cancer. It is the highest cause of death from cancer in people aged 0-39 and there have been no significant changes in five year survival rates. It has the largest lifetime financial cost of any cancer type, at $149,000 per person, and highest lifetime economic cost of any cancer type, at 1.89 million dollars per person. Brain tumour research funding is low in relation to the burden of the disease.

On a lighter note, in the footy tipping I got all of the games right, I now lead both Nana and Pop by six points. The best thing about last weeks games was the Tigers winning by so much!

Next week is back to school, I am a little bit nervous about returning but I will remain positive to do my best. Wishing you all a splendiferous week and thank you for your continued words of encouragement.

THE SECOND WEEK OF THE SCHOOL HOLIDAYS

2011-07-15T17:49:00.001+10:00

9th to 15 July 2011

My second week of the School Holidays was a relaxing one, I have spent most of the time reading books, doing some decoupage, knitted a teddy bears cardigan, watching DVD's and playing my favourite game Upwords. Our weather has improved on last weeks blizzard like conditions and we have actually had some sunshine.

Both Nalani and Jarrett returned to running training this week, Nalani after seven months away following her knee surgery and Jarrett after his virus. I am waiting for the day that I can return also to my running which I love so much before I found out that I had a Brain Tumour. I will not run the same as I did before because the tumour, surgery and treatment have left me with several side effects. I do have a disability classification, it is called T/F36, this means I compete against other athletes with the same classification.

This week I have been able to ride the exercise bike without my heel hurting, I am so pleased because this will help my leg muscles to build back up and strengthen so I will be able to attempt walking again with my rollator. Having the stress fracture in my heel has been not only painful but also frustrating, it is something that takes time and patience to heal.

Next week is the last week of the School Holidays then it is back to school for term three, during term three I have an appointment with the Cardiologist, Endocrinologist as well as having to go to Sydney for various appointments and procedures.

I have been praying for the families of two precious angels who were taken from the earth this week, Charlene a young mother and Layla just a baby, God decided to take them to be with him.

Thank you to everyone who writes lovely comments on my Blog, I wish you many rainbows throughout the coming week.

SCHOOL HOLIDAYS BEGIN WITH ARCTIC WEATHER

2011-07-08T16:28:00.001+10:00

2nd to 8th July 2011

School Holidays have begun, they are a time to have a well deserved break away from the pressure of school to spend quality time with family and to restore energy and spirits. However the start of the holidays also was the beginning of horrendous blizzard conditions in Canberra, the winds howled like a wolf crying at the moonlight, tiny pieces of frozen ice fell from the heavy dark clouds and the sun refused to appear.

Jarrett ran in a 4.5km point score Cross Country Race, he started off very quickly but as the race progressed he found his whole body ached and he felt terribly ill, he still managed to come third. He went to the doctors and found out he had a flu like viral infection with a cross infection also, he has not been able to train for the whole week, which is frustrating for him with Nationals only six weeks away this weekend.

On Sunday we had a special visit from Michelle, Josiah her little boy and her Mum, it was lovely to catch up with them all. The rest of the weekend was spent watching DVD's and playing some PlayStation games.

With the disastrous weather and both Mum and Jarrett being ill, we have spent the first week of the School Holidays indoors attempting to keep warm and recover from all our ailments. I decided to make some scrumptious chocolate chip muffins to cheer everyone up, they put a smile on everyone's face especially when they were heated in the microwave with smooth vanilla custard.

I have been waking with headaches every morning which make me feel quite nauseous, they have often lasted throughout the whole day varying in intensity, panadol and rest seem to offer some relief from them. I'm not sure why I'm getting them, maybe I am coming down with another infection, perhaps Mum and Jarrett have spread their germs!

Today I had physiotherapy, Rhiannon gave me some magnificent news that my stress fracture in my heel is almost healed, she taped my calf and heel with special tape so that pressure is relieved as I try to put a little bit of weight on it. She also did some work on my neck and shoulder which have been a bit sore and stiff, I had heat on my neck and it felt sensational. I think Rhiannon is the best physiotherapist in the world!

You might remember me mentioning to pray for Chris and his family, he has just recently been diagnosed with T-Cell non-Hodgkins Lymphoma, his story is going to be on television tonight on ABC 7.30 ACT (it use to be called Stateline) and Chris is the person who interviewed me to tell my story. I think you will find that he is another truly inspirational person. http://www.abc.net.au/news/2011-07-08/topic-of-cancer/2787914

OFF SCHOOL AND AUSTRALIAN HEARING APPOINTMENT

2011-07-01T20:08:00.000+10:00

25th June to 1st July 2011

'Never leave it too late, remember how much your parents have given you, be grateful for their sacrifices. Shower them with love, enjoy their company and enhance their lives'.

Family are really important, we should all treasure each other. My family have looked after me this week while I have been unwell with yet another viral infection. I have felt miserable and been unable to go to school at all this week. Instead I have spent the week taking medication and resting in the hope of recovering from my illness.

I did have one appointment this week and that was with Australian Hearing for an audiology review. The test was very thorough and went for over an hour. Initially we discussed any issues I had experienced with my hearing, background noise even when wearing my hearing aid has been a major issue for me with my hearing because when there is background noise I do not hear clearly and it makes it difficult to become involved in conversations. The audiologist tested my hearing and found that my right and left ears have both had serious deterioration in hearing levels at the middle to high frequency ranges. It is the type of chemotherapy drugs that I was on, particularly the cisplatin that have caused the hearing loss. She then checked how I hear sounds and my ability to repeat sentences with background noise with nothing, a hearing aid and an FM transmitter. The FM transmitter was the test with the more encouraging result as I could hear and repeat most of the sentences I was given without having to strain or try to guess what I had heard. Once the testing was completed then my hearing aid was recalibrated using the computer results from my tests so that I will be able to hear a little more clearly. I was then advised that I need to wear my hearing aid all the time and use my FM transmitter all the time in a classroom situation or even when I am out where there is extensive background noise. If my hearing in my left continues to deteriorate then it is most likely that I will also need a hearing aid for that ear also. I have to be retested again in twelve months however if I feel that my hearing worsens at all or have any other difficulties then we have to let them know and see them sooner.

Jarrett has recovered from his croup and is racing in a 4.5km Junior Pointscore Cross Country Race tomorrow. Nalani's knee is becoming stronger everyday and she is looking forward to competing in some races soon.

We are now on School Holidays, we have a three week break, I am hoping to get over my infection so that we can enjoy some activities together. The weather forecast for next week is not too promising with rain, gusty winds and bitter temperatures, I guess that is what we should expect being the middle of Winter.

In the footy tipping I am still leading by just four points, Pop had an exceptional week last week getting all of the games right and caught up with Nana.

Wishing everyone a splendiferous week and thank you for all your encouraging comments.

MORE COLD WEATHER AND A SAD LOSS

2011-06-24T17:41:00.005+10:00

18th to 24th June 2011

This has been a week of many storms, dark clouds have not only filled our skies here bringing rain, blizzard like winds, sleet and flakes of soft white snow but our lives have also been touched by clouds bringing much sadness.

Jarrett could not compete in the ACT Cross Country Championships because of his croup, my goal had been to compete at them also but was unable to due to my stress fracture and Nalani's rehabilitation was not quite at the level to be able to race either. Instead Jarrett and I were spectators and Nalani assisted as a recorder at the event. Next year we are all hoping to be able to compete together and show everyone just what we are all capable of.

Sunday Mum, Nalani and I were all been treated to a special pamper day which Camp Quality had invited us to. We had an early start at the Diamant Hotel where we were told we were going on a little mystery trip to do something special. We piled into the Camp Quality Van with other excited Mums and daughters, our mystery surprise was that we were having a jewellery making session at The Bead Barn at Federation Square. We made a necklace and earrings, we got to choose which beads we wanted to use, I chose red and black and used gold string and clasps, the lady running the class said my choice was very regal. We had a splendiferous time although I held everyone up as I was a little slow with my fine motor skills but no one seemed to mind. After we finished our jewellery making we were taken back to The Diamant Hotel for lunch, it was a Spanish Tappers meal, where you get several dishes to sample, when the food arrived it looked liked something out of Master Chef, some of the dishes I found a little too spicy for me however I especially loved the dessert which was a stick made of doughnut and coated liberally with cinnamon sugar and you could dip it in chocolate, it was absolutely scrumptious. After a creamy hot chocolate we were then taken away for our special pamper, Nalani and I had our makeup done, I don't wear makeup but it was fun having it done, I felt like a model and so did Nalani and she looked really gorgeous. Then Nalani got to have her hair done, she had some loose curls done and they looked really pretty. Unfortunately, I could not have my hair done because I have virtually no hair. I am so lucky to have all my beautiful wigs so that I can have whatever hairstyle, colour or length I wish to have. Mum was treated to a facial and she glowed after having it, she told us that she had not had one done in over twenty years. The Diamant Hotel is a heritage listed building and it is unbelievably majestic. The whole day felt like a fairytale and we felt so fortunate to be given the opportunity to be part of it.

We had nearly not gone though because just before we were about to leave to go we received the unexpected and shocking news that my Grandad, who is my Dad's father had passed away. It was so sad, and left us all quite numb. He passed away on 19th June, the next day would have been his Birthday. One comfort for us all was that he did not suffer, he just went to bed on the Saturday night and did not wake up on Sunday morning.

This is a special verse I found that I think is so lovely and I dedicate it to my Grandad.

'We little knew that morning that God was going to call your name.
In life we loved you dearly, in death we do the same.
It broke our hearts to lose you, you did not go alone;
for part of us went with you the day God called you home.
You left us peaceful memories, your love is still our guide,
and though we cannot see you, you are always by our side.
Our family chain is broken and nothing seems the same,
but as God calls us one by one, the chain will link again.'

Dad has spent the week in Brisbane, we were not able to go but our hearts will always hold Grandad close.

At school we are winding down, as next week is our last week of Term 2, in Science we were looking at pulley's and how the more pulley's you add then the less effort you have to use so even someone like my teacher would be able to remove a car engine if there were heaps of pulleys with little effort. In English we are now doing work on Macbeth and we looked at the Banquet Scene when Macbeth saw the ghost of Banquo. In Maths we are just doing revision work with numbers, fractions and ratio's.

Nalani had the rest of her Year 12 exams this week and after doing an AST practise today she has now finished school for this Term, lucky her, she has four weeks holidays. Jarrett is actually also doing Macbeth so we have been able to share ideas and thoughts about it.

The cold weather has brought many illnesses to Canberra and on returning to school, I have now picked up another infection, I have a terrible middle ear infection, it is extremely painful and whenever I swallow my ears pop and throb. I am again on antibiotics to try to clear it up, I think the holidays will give my body the chance to try to recuperate and hopefully I won't be as ill next Term. The weather is supposed to improve over the weekend, with frost overnight but beautiful crystal clear days with pleasant temperatures.

I had physiotherapy today and every time I see Rhiannon I am so grateful to have such a talented and wise physiotherapist looking after my welfare. My heel is slowly mending but I am still unable to put full weight on it with stabbing pain, it is only five weeks on Sunday since I injured it though so I must remain patient and it will mend. Today I had a tight achilles and calf which felt so wonderful when they were released then I did some upper body work with weights to help continue strengthening my upper body, when I do any exercises I notice that my right side is weaker than my left, this will remain with me always but I can make it as strong as it can possibly be by doing the exercises that Rhiannon gives me, I do them everyday. So many people are often given tasks to do like physiotherapy exercises but have a million and one excuses not to do them, yet the only way to help yourself is to make yourself do them because it will pay off in the long run.

I had a dreadful week in footy tipping, I only got two right, Nana got five and she is now only four points behind me, I must admit I am a little concerned now, Nana said her good fortune came because her Birthday was on 21st June, then Pop requested extra points because his Birthday is not during football season but both Nana and I firmly told him NO! I do hope that I do a little better this week, I am very disappointed that Benji has a knee injury and I am hoping that the Tigers can find inner strength to beat the Bulldogs.

Earlier in the Blog I mentioned our fairytale day at The Diamant Hotel, late yesterday afternoon there was a destructive raging fire there, no one was injured in the blaze which was so lucky, there were five fire pumpers, a Bronto Skylift hydraulic platform and a specialist breathing apparatus unit brought in to fight the massive fire. Smoke billowed over the city as one of the two buildings which make up the complex burned and many key roads were blocked. Today they are saying that 85% of the Hotel was damaged, they are hoping to rebuild it in the future and they are investigating how it happened.

So as you can see this week has been quite a devastating one, filled with storms, however in the back of my mind I always keep remembering that after a storm there is always a rainbow, so hopefully next week will see a huge rainbow to take away the pain.

COLD WEATHER BRINGS ILLNESS

2011-06-17T19:48:00.001+10:00

11th to 17th June 2011

We were extremely lucky to have a long weekend to celebrate the Queens Birthday, our weather improved and we were treated to some sunshine on Saturday which was fortunate because Jarrett was running in a Cross Country Point Score Event, it was a 3km one on a very hilly, gravel course. It was his first race since his asthma attack and I knew that he was fairly anxious before the start. He had a terrific start and led the field through the croaked eucalyptus trees, up the first hill and out of sight. A smile formed on my face when we spotted him coming back, running strongly to win by over one minute. In fact it was hard to say who had the largest smile, me because I was so happy he had not had any problems and was running, well to me when he runs it is like he is flying, Mum because she is so close to us and feels all our pain and excitement or Jarrett whose smile was one of relief and joy.

Sunday we went to running training, the morning started off sunny and still but towards the end it had become dreadfully dark and gloomy with strong, gusty winds. Nalani managed to actually do some running, six months after major knee surgery she has worked so courageously and determinedly to make it to this point. I think that her smile on this day matched all of ours from the day before.

This week was week seven at school, we only have two more weeks until School Holidays and then we get a three week break which I think many students will need because with our drastically cold weather there is so many illnesses going around. In Integrated Studies the class are still working on problem based solving questions, in English we are looking at various aspects of Shakespeare works and in Science our Physics unit and we looked at levers, I also had to do a Science test which was extremely demanding as most of the questions required quite detailed answers and I am so slow at handwriting.

When you are at school and have low immunity you can very easily pick up any germs that are present in the air, I have ended up with another cold, after I have barely recovered from my bout of bronchitis. I am not the only one though, Jarrett has a viral infection and croup, he has been rather unwell and has had to miss running training, school and this weekend is unable to run in the Athletics ACT Cross Country Championships this weekend, which of course he is devastated about. Earlier in the Year I had a goal to compete in this event also but of course with my stress fracture which is still healing I am not able to achieve that goal however I have set that same goal for next year now.

Nalani has begun her Year 12 exams, she is constantly studying as she hopes to do exceptionally well in her subjects, she has already done her PE exam and her Maths exam, next week she has her other exams then has an AST practise on Friday, once that is over she is finished school for this Term, so she actually gets a longer holiday than Jarrett and I. This afternoon she sang with the choir and they were live on the radio, the song they sang was called They Rhythm of Life.

Today the day started off with the sun streaming in the windows promising a delightful Winter day, however the sun was teasing us because as the day progressed the weather deteriorated quickly, low, heavy grey clouds appeared and suddenly the temperature dropped, then sleet began to fall ever so gently like little chips of ice that melted as soon as they touched the ground that the earlier sun had warmed. The icy winds then whipped up even making ripples in the bird bath out the front, it was truly a cold Winters day.

There is a very special person that I would like to ask you to pray for, it is Chris and his family, he did the interview with me on Stateline, he is not well at the moment, he is another extraordinary person who has been given a difficult journey and I hope that with our prayers he will be able to go through his journey more easily.

I have heard tonight from my Endocrinologist and I am afraid to say it is not all good news, some of my some recent tests show that I have a growth hormone deficiency which I will need to have injections everyday for which Mum will have to administer however approval has to go through for them before I can begin them. I also have extremely high cholesterol, problems with my liver function, some thyroid issues and an insulin resistance. There is one concern with giving me growth hormones and that is that they can cause tumours to become aggressive and there is concern about the remaining tumour however if I don't have them then there are several other serious issues that could arise so they will try the growth hormones and see what happens. More challenges but they will only make me stronger, I have learnt that been positive and seeing a challenge as a positive on this journey has been important. You have to try to have a positive outlook on your life and those little aches and pains are nothing compared to what some other people are going through.

CANBERRA FREEZES

2011-06-10T20:11:00.001+10:00

4th to 10th June 2011

As many States in Australia are experiencing their coldest winter temperatures in years, Canberra has not been left out. From Monday through to Wednesday we suffered arctic temperatures that truly brought tears to your eyes and made your bones ache. At 3pm on Wednesday our temperature was a mere 3 degrees but with the dreadful icy winds it felt like 1.3 degrees, that was unbelievable and definitely a day to stay indoors rugged up in warm clothes and consuming hot drinks. We are now expecting a couple of more pleasant days before showers and rain for the remainder of the coming week.

Saturday was Jarrett's 16th Birthday, we made his day extra special just like he is, we went to lunch and had a delicious meal that just melted in your mouth at a place called Joey's in Watson and after dinner we had a scrumptious tiramasu cake.

On Monday it was ACT Schools Cross Country Championships, although the weather started off with the sun shinning as the day progressed it became cloudy and the temperature plummeted. I rugged up warmly but the wind seemed to still sneak through all my layers. It was time for Jarrett's race he is in the 16/17 Males ages group, this means that he is running against boys who are a year older than him. I wished Jarrett good luck and watched him walk towards the start line, there was a huge field been two age groups combined, the starter said go and they took off. Jarrett had to run 6km, which was three laps of the 2km Stromlo Course, after the first lap three of them had broken away from the rest of the field with two other boys a little distance away, Jarrett was in that group of three. After the second lap it was the same, Jarrett looked to be running so well I was extremely excited for him. As they came out of the last loop of the last lap I saw two boys running but Jarrett was not one of them, then I saw him not too far back I wondered if his legs had become tired. In the end he came third, he was the second boy in his age group I was so proud of him. Unfortunately he had had another serious asthma attack, he said it happened with just 1km to go as he took off but his chest tightened and restricted his breathing and he found he could not breath properly and became worried. The attack was not as severe as the one he had in Brisbane last August but it is always frightening to see that happen to him, Lachie who helped him in Brisbane was there checking on him again. Jarrett was so disappointed and frustrated, he saw the doctor who said that unfortunately with asthma sometimes extremes in weather can affect it like cold, heat and humidity and that is what had occurred, so he now has to run with his ventolin in poor weather conditions just in case. The doctor checked his lungs and heart and everything is perfectly fine with them so that is great news.

I could not go to school this week because I have been rather unwell, I have bronchitis which is an acute inflammation of the air passages within the lungs. It occurs when the trachea (windpipe) and the large and small bronchi (airways) within the lungs become inflamed because of infection. I am on antibiotics and have to use inhalers called ventolin and seretide, when I cough especially early in the morning and late in the afternoon into the evening it hurts my chest and the cough is so bad it almost makes me vomit. I guess it was a good week to be told by the doctors to stay indoors and away from school where I could also pick up another infection. I am still not feeling very well and coughing up masses of mucous which I wonder where it is all coming from

I had physiotherapy today, I am not allowed to put weight onto my heel yet, but I am able to do some upper body exercises, it will be another couple of weeks before I am able to put weight onto my heel, I will then have to take things carefully. I know that Rhiannon will help me rehabilitate and become strong again so that I will be able to reach the goals that I set myself.

Poor Dad he came home from work on Tuesday and when we saw him we were horrified because he had injured himself, he had a huge, deep cut from the corner of his right eye all the way down his cheek, he told us he had caught it on a piece of timber. He did not need stitches but had to have a tetanus injection and steristrips put on the deepest part of the cut. It looks really dreadful and painful although Dad says it is not and he now has a terrible black and purple bruise as well.

Amidst all the drama of the week Jarrett had his Year 10 exams from Tuesday to Thursday on two of the days he had three exams in one day, he was very tired by the end of them and pleased they were over, Nalani begins her Year 12 exams for this Semester on Thursday next week, her exams are over two weeks, she is spending the long weekend studying.

Nalani is singing with the School Choir next Friday and they are going to be broadcast on ABC 666 in the afternoon live, they are signing from 4.00 to 4.30pm. I love listening to the choir they sound so beautiful and it is always exciting to see Nalani sing at special events.

In the footy tips I am still winning, Nana is now coming second and poor Pop is coming last, he keeps asking for some extra points because he is behind and when he had a tooth taken out this week he asked if he could get some extra points for that, both Nana and I told him - No!

I hope that you all have a wonderful long weekend, stay warm and keep well.

Remember even when the skies are grey if we look into our hearts we can find warmth and happiness to turn those grey skies to blue.

TESTS IN HOSPITAL

2011-06-03T20:09:00.000+10:00

28th May to 3rd June 2011

This week Winter began, we were fortunate to have glorious days with the sun shinning and just a slight chill to the air but I think that is all about to change next week as forecasts of only eleven degrees are predicted. Winter may be cold but it is also a special time because it is Jarrett's 16th Birthday on the 4th of June and my Nana's Birthday on the shortest day of the year, the 21st of June.

On the weekend I could not go for my walk with my rollator because of my stress fracture, however when Jarrett was doing his running training at Stromlo I was acting as Nalani's coach, guiding her in her running, telling her to watch her arms and to not drag her feet as she ran. I also taped out a beat for her on my leg so that she could work out a pace. On the Sunday Mum pushed me in my wheelchair around the perimeter of the AIS and I breathed in the fresh scents of the early morning air, it was refreshing.

At school we have again been extremely busy, I had a Maths test on the Monday during the double period, it is extremely difficult for me to cope with test situations, they are so strenuous for me, my eyes began to flicker endlessly and pins and needles started to run up and down my right arm. It is so frustrating to have all this happen when you are attempting to do a test. At the completion of the test, I was utterly exhausted and unfortunately had a seizure where I experienced pain in my right arm, felt so strange, then found that my arm had dropped and I was weak and so tired, I had to sleep. My eyes had dilated and my body had gone limp, luckily by the evening I had made a recovery except I felt very weakened.

In English we are now looking at Shakespeare, we were doing some work on Romeo and Juliet which is a romantic tragedy. We are also going to do Macbeth, Taming of the Shrew and The Merchant of Venice, sometimes the language is extremely complex and often it can become rather confusing. I have finished writing my moral tale for the Year 1 and 2 classes, I am so excited about the finished product, for illustrations I took photographs on my digital camera, I used my bears to tell the story and it looks brilliant.

I have almost finished my art sculpture, papermache can be very messy and sticky and trying to papermache around fingers of the gloves was actually quite challenging. I am now up to painting it, my base is blue, like the sea and my hands appear to be coming out of the sea reaching as if in prayer to the sky, I have used a bright yellow for the hands. I thought that a quote for my emotion could be: 'having the emotion of hope in your heart is like rising out of a deep, dark sea of hopelessness and reaching up to touch the brightest, glistening star in the vast sky of hope'.

My heel has remained excruciatingly painful, especially if I attempt to put any weight on it, I actually almost jump out of my skin if any weight is put on it. So I have been taking pain killers and resting it hoping that it will recover quickly so I can get on with my goals.

This week also was one that I had to spend time in hospital having more tests, this time I was having three endocrine tests, a lucrin one, a senacrin one and an arginine one. I had to have a cannula inserted and initial bloods taken, then I had an injection of lucrin into my quad muscle, as well as the senacrin put into the cannula. Bloods were taken regularly for a few hours then I had the arginine put through an IV into my cannula and had bloods taken every fifteen minutes for two hours. It was all too much for my poor vein, it gave up, they tried a warm blanket on my arm, numerous saline flushes into the cannula and pushing on the vein to try to encourage it but it was bone dry, not a drop of blood came. So I had to have another cannula inserted, this time into my left hand, when it went it the blood began to flow, it came so freely that I had blood dripping down my hand and onto the bed sheet, it resembled something from a horror movie. Once it was capped off it stopped. I had fasted since dinner the night before so by the time the testing was completed at 4pm I was famished as well as feeling really dizzy and a little nauseous. The tests had been exhausting, once I had something to eat all I wanted to do was sleep. I thought that they took so many vials last time, well this time, there were thirty vials that were taken, so that is the new record, I hope that never gets beaten. This morning I had to have another blood test, we had to tell them not to use my right arm, I pleased when the blood came easily from the left arm vein as previously I have had troubles with it. I see my endocrinologist again in July, he will then let me know the results and if I have to have more tests.

I also found out this week that I will be going to Sydney in early August for several appointments including MRI's, a lumbar puncture, neuropyschological test as well as seeing a neurologist. It will mean a week away from home and school.

Tomorrow is Jarrett's Birthday, I hope that I am feeling a little better so that I can help him celebrate his special day. Then on Monday he is running at Stromlo in the ACT Schools Cross Country Championship, he is in the 16/17 age group so he will be running against boys who are twelve months older than him, his hope is to come in the top five, I think he will be able to do it, he is my champion, if he does well he will be chosen for the ACT team to compete at National Cross Country. On Tuesday he begins his Year 10 exams for this Semester, so it is a huge week for him.

Wishing you all a splendiferous week ahead, I hope that you all keep warm during the Winter.

A QUIETER WEEK AND AN UNEXPECTED INJURY

2011-05-27T20:12:00.000+10:00

21st to 27th May 2011

'When thick clouds cross my path, there is a light that shines on me that guides me through to brighter days'

My weekend was a hectic one completing the many assignments that we have been given for school. I had a break though to watch Jarrett run in the Half Marathon Eve 5km Fun Run and Junior Point Score, it was a huge field of runners of all ages and abilities. The weather conditions were favourable however as the race progressed the winds began to increase. Jarrett ran perfectly, being one of the lead runners in the event, as the race went on one runner had taken the lead with Jarrett a clear second place. We waited at the finish line to see Jarrett run a magnificent race, coming second overall but he was the first Junior across the line. He ran an excellent time of 16:26:00 which was terrific on that particular course. He received a trophy which he let me hold, he still always says he runs every race for me. He also received maximum points for the point score, he has now received the maximum points in all three races he has run in so far this season.

Sunday, inspired by Jarrett's race I was determined to do my 3km walk again with my rollator around the perimeter of the AIS without stopping. I made it over the toughest hill, red faced and slightly puffing and went on, I had not stopped but suddenly that all changed, the path was slightly uneven and I kicked into my rollator wheel with my left foot and then went for a tremendous stumble onto my right side. Immediately I had pain in my ankle, knee and heel. I continued to the end but was in excruciating pain, I felt that I had done something serious. At home, I rested it, tried to ice it but it stung like crazy and was unbearable and I elevated it. The pain continued for the rest of the day and into the week, often the pain becoming more severe.

So I spent this week having it investigated, I am afraid to say that I have a stress fracture again in exactly the same location that it occurred last time. There is nothing much I can do for it other than stay off it and do the little exercises Rhiannon my physiotherapist has given me to do and wait for it to heal. I am so disappointed as I had felt I was making progress and would perhaps be able to do the Athletics ACT Cross Country but now there is no hope of that.

At school I have had to endure the pain from my heal and try to concentrate on the work, that is not an easy task but you have to just grin and bear it. Pain also makes me feel nauseous and totally exhausted so I felt rather miserable sitting in class.

In Maths we are still completing tasks related to Pythagoras theorem, in English we listened to Barack Obama's speech when he was named President Elect of the United States, in Science we have moved on from Forces and Newton's Laws to Energy and in Christian Living we are working on our Moral Tale.

On Thursday I had to present my speech in English, my speech was on bullying, I think I presented it well, from the class speeches the teacher's decide who will go on to do their speeches at a special Middle School Public Speaking Night.

In Footy Tipping I am still winning with 49 points, Nana and Pop are now both on 44, I am hoping to increase my lead this weekend. There could be some interesting results because so many players had a tough game in the State of Origin, which by the way I was going for Queensland.

Nalani did PE for the first time in ages this week, she was so excited to be able to participate, she is hoping to do further study in the area of sports massage, sport management or sport science when she finishes Year 12 this year.

Next week I have to go into hospital on Wednesday for more tests, I will let you know all about them in next week's Blog.

I have started a new fund raising project for the Brain Tumour Fund, I am collecting five cent pieces in a container from change we get when we go to the shops and sometimes ones that one of us finds on the ground, many people seem to drop them as if they are worth nothing but each five cent piece could add up to a large amount to help funds like the Brain Tumour one I hope to fill my container fully before the end of the year.

I love all the wonderful comments you leave me and treasure the encouraging and helpful suggestions you make, thank you.

SCHOOL, LUNG FUNCTION TEST AND ENDOCRINOLOGIST

2011-05-20T20:38:00.001+10:00

14th to 20th May 2011

It took a long time for me to recover from the effects of my glycogon test and even on the weekend I was still not back to feeling 100%. However I don't think on any day I feel 100%, some days for me are better than others, on my good days I try to make the most of my strength and health. Jarrett had running training at Stromlo, it is a purpose built Cross Country Course designed by Robert de Castella, it normally has a lush green cover of grass but with the cold weather it tends to go a grey colour because of the type of grass. I wanted to walk some of the course so I asked Mum and Dad if they could walk beside me, holding onto my arms and balancing me, I guess you could say they acted like crutches for me. I wanted to walk the 1km loop, I knew that was far enough considering how ill I had been during the week. It took me the hour session that Jarrett had but I did it. The ground felt so strange under my feet, extremely uneven, it was almost like walking on lots of cushions at different intervals and on a few occasions I did off balance but had the support of my crutches - Mum and Dad. My calves were rather painful after the walk and continued to be painful and stiff as well as having pain and weakness behind my right knee so on Sunday my walk with my rollator around the AIS was also much shorter than usual.

It was back to school on Monday for a hectic week learning new topics as well as an endless number of assessments. In Maths we are learning Pythagoras's theorem, I love it, it is so easy, in Integrated Studies we are looking at modelled problems, in Science our topic is The Law of Physics so we looked at Newton's laws, in English we were inspired by listening to and watching Martin Luther Kings I have a Dream speech, for Art I continued working on my emotion sculpture and in Information Technology I did more work on my power point presentation.

Our nights have been arctic with thick, heavy frosts with subzero temperatures, yet the days have been pleasant when the sun shines melting away the ice, leaving it glistening like diamonds on the grass and plants. I have an electric blanket on my bed and I just adore the warmth that I am instantly greeted with as I climb under the covers each night. I have noticed that with the colder temperatures at night, my bones have begun to ache and I sometimes wake during the night with a chilly head, my head is still lacking a luxurious cover of hair, so those bald patches get cold easily.

I had a lung function test this week, when I was in Sydney I used to have to have three different tests but I only had to do one of them this time. I knew the drill, the person doing the test did not even have to explain to me how to do it, I guess you do become an expert when you have to undergo a test frequently. The result was okay, my lung function is on the lowest side of normal which it was during chemotherapy, so that is stable. I may have to use a puffer regularly just to assist my lungs a bit more and especially if I become ill with a cold.

My week ended with my Endocrinology appointment, waiting in the hospital I was feeling anxious about my results. I reflected on the fact that when I had radiation I thought it was easy compared to chemotherapy which had made me so dreadfully ill. I even remember asking for more radiation instead of chemotherapy but radiation has more unpleasant long term side effects. I was about to find out just how many when I received my results from my tests. They showed that I have multiple hormone deficiencies, cortisol issues, a growth hormone deficiency as well as an unexpected and generally rare effect which only 5% of patients get and that is radiation caused high cholesterol because of the results I now have to have more tests, in fact three quite invasive tests in one day. These tests are going to be done on 1st June, from those results treatment options will be looked at and perhaps even more tests. The doctor is going to apply for growth hormone replacement therapy which has to all be approved and can take some time. The hormone replacement would take the form of an injection which Mum would have to give me on a daily basis. He again reminded me that my spine will not grow at all because of the radiation, only my legs will grow with this treatment. I have also been told that my face will outgrow my head which will not grow any further either, if you have a decent amount of hair that can hide it a little, however with my hair been so scarce, it will be better for me to wear wigs to help this. On a positive note, my thyroid results were not as severe as he expected, however he has warned me that he expects this to change within the next few months. Having a positive was terrific as the news was quite difficult to hear.

Life goes on and what I can take from today is that there is treatment, it may not be pleasant, it may also have numerous side effects but something can be done. As always I make the most of every day and look forward to trying to do as much as I can into the future.

Jarrett is racing in a 5km Cross Country point score race tomorrow afternoon, Nalani is singing with the choir at the opening of a new library and we all have homework to keep us busy this weekend. Nalani's knee is mending well, she is now jogging on the spot and doing straight line jogging, some drills and is still working determinedly at the gym.

I am still winning the footy tipping leading with 45, Nana is on 42 and poor Pop is trailing behind on 40. Last week there were so many upsets, I am hoping that this week is a little more predictable.

If I am ever feeling low, I always remember that there is always someone out there who is worse off than I am, I look at my family who love me so very much and then realise what a lucky girl I am, all my clouds are whisked away and replaced by the sunshine of my smile.

IN HOSPITAL FOR TESTS

2011-05-14T13:27:00.000+10:00

7th to 13th May 2011

Dad's Birthday was on Saturday, we all spoilt him throughout the day including having a pizza dinner. Jarrett ran in a 3.2km pointscore Cross Country event and as a special gift for Dad, he won the race easily, gaining maximum points. I also had to have a blood test on Saturday because the one I had on Friday had clots in it. They used my right arm vein which was still bruised from my MRI, the blood flowed smoothly and quickly. Sunday of course was Mothers Day so that was Mum's day to be spoilt, she does so much for all of us so it is one day that we can do some little things to show her how much we appreciate her. For dinner I helped make vegetable slice and match sticks which you use puff pastry, cut it into rectangles, bake them, let them cool, put jam on them, pipe cream on top of the jam, put a lid on and sift icing sugar onto it, as a special touch we also drizzled melted chocolate on top also. They are absolutely scrumptious and we all enjoyed eating them.

Then the week began with me being in hospital, I had to have a glycogon stimulation test, we had to arrive at the hospital before 9am. Once there I had to have a cannula put in, they decided to put it into the right arm vein as it is my best vein even though it was bruised from the test on Saturday. They wrapped my arm in a heated blanket to try to make it a little more comfortable when they inserted the cannula and also to make the vein more prominent. Once the cannula was in, I had to have blood taken, they seemed to be drawing the blood forever but eventually it was finished. To help keep my arm straight they strapped my arm to a special board and then it was time for me to go to my hospital bed for the day. Next they came to give me an injection in my thigh, because I am allergic to EMLA which is a special patch they often use for children to numb the spot where an injection is going to in, they gave me an ice pack to place on my thigh and said it would numb it and make the injection more pleasant. No one has ever suggested this before and I found that it was terrific as my thigh was numb and I did not feel the injection go in. So if you are allergic to EMLA there is something you can do to make an injection less painful. An hour after the injection the nurses came to take blood and check my sugar levels, then every half hour after that they came and took more blood, this happened for three hours. Each time they took two large vials of blood, altogether that day I had 18 huge vials of blood taken from me. They also did two finger prick blood tests, I was feeling quite weak as I had had to fast from the night before and having so much blood taken. Finally I was allowed to eat and drink something and was monitored, they decided that I was able to go home but I was told I could feel rather weak and nauseous over the next days.

They were right because when I arrived home I was so tired I slept, on waking I felt dreadfully nauseous, having some dry retching and terrible stomach pains. Over the next few days the nausea continued and all I wanted to do was sleep most of the day. I was unable to go to school or even attempt to do school work at home. I also found that my walking went haywire, I could not balance properly and could only walk small distances before becoming overwhelmed with dizziness. By the end of the week I was pleased that there had been improvement although I still remained weakened and tired.

I had physiotherapy on Friday, from being in a hospital bed my neck and shoulders had become tight and stiff and my knee had also become tight and painful from walking and being off so dreadfully off balanced. However Rhiannon my guardian angel of physiotherapy massaged my tight, sore areas and used heat to help me, after feeling so horrible all week having physiotherapy was definitely a highlight.

The weather was also appalling this week, it was freezing cold, with arctic winds, sleet and heavy frosts, in a way I was glad to be indoors where the heating was lovely and warm, I could wrap myself in a cosy blanket and cuddle Theodore.

Next week I have more appointments, a lung function test and a visit to hospital to see the Endocrinologist who will hopefully be able to let me know my test results. Last time we saw him he said that I would also have to have more tests that involved staying in hospital for a longer period of time, he was going to tell us about those when we see him.

I am still winning the footy tips, last week I got three out of the four games, so did Nana and Pop so our positions have remained the same. This week could see some changes though and after the Friday night games I got one right and one wrong.

The trees that were covered in red and golden leaves last week are now almost virtually bare, Winter will be upon us very soon but those red and golden colours can remain with us throughout the cold days when we smile, care and help each other. Wishing you all a splendiferous week ahead, rug up and be kind to everyone you meet.

BACK TO SCHOOL

2011-05-06T17:51:00.001+10:00

30th April to 6th May 2011

My weekend was a quiet one in preparation for my return to school for Term 2 although there was one special achievement I would like to share with you and that was that using my rollator I walked approximately 3km, yes that is right 3km on the paths around the AIS on Saturday. I did stop to have a rest at the half way point because there had been hills which made my face turn a bright red with the huge effort I had to make to conquer them. It took me the hour of Jarrett's training to do it but I felt so very proud of myself. As you can imagine I then spent the rest of the day resting and having my calves rubbed with some deep heat as they became extremely tight and sore following the walk, also my right knee swelled so I had to use some ice on that.

An overcast and extremely cold morning greeted us for the first day back at school on that morning my stomach was filled with nerves. It began with a double maths lesson, we were given a Rich Task to complete over the first two weeks of Term, it is all about statistical analysis, I am excited about this task as it is something that interests me. Having a double lesson really tires me so I spent recess resting so I would be able to continue on for the rest of the day. In English we are finishing off our poetry unit and then starting on Speeches which is something else I really enjoy doing. Then in Art we are doing a 3D sculpture using wire and paper mache it has to show an emotion and we can either do a head, hand or whole body to show it, once we have made it, we have to paint it with colours that express the emotion we have chosen.

Tuesday I had Integrated Studies, we did some History activities, in Science we worked on our discussion for our Science Report about the Effect of Salinity in Plants. For English we had a poetry evaluation on the poem Jaguar, it was a truly moving as well as heartbreaking because it ended in death. In maths we continued working on our Rich Task which is where you have to do certain activities to earn stars, the aim is to earn as many stars as possible in the given amount of time. Integrated Studies was the last lesson and we again worked on questions from a workbook about History.

My Wednesday began with a double Science lesson, we are looking at Force this Term, we did some activities involving magnets, blowing through straws and static electricity. Then in I.T we are working on creating our own Website, firstly we have to submit a plan as a power point presentation, I am doing mine on Cross Country Running for Students, I used to love my Cross Country Running and hope to eventually be able to run again one day.

Today at school I had English, I have to choose a topic to do a speech about in week 4 of this Term, there are so many to choose from or we can choose a topic that is approved by the teacher. Maths was my next subject, we again worked on our Rich Task, I am now up to 24 stars the minimum we had to do was 18 so I am pleased to be past that as the more tasks you do, if you do them correctly the better grade you can achieve. Then it was time for Christian Living, we have an interesting assessment task to do, we have to write a book which has a moral for the children in Early Childhood they are from pre-school to Year 2. This is something I know that I am going to love doing, I already have many ideas about how I want to present it so that the children will love it and I may use Theodore to help. I don't want to give too much away at the moment until my idea develops more.

You will notice that I did not mention school on Thursday, that is because I did not go because I had to go to Hospital for an appointment with an oncologist. I have found out that I have to go to Sydney in August to have my MRI, Lumbar puncture, Neurologist appointment and Neuropsychological Test. An MRI of my spine has to be done here in Canberra in the next couple of weeks and some more brain images to check for more enlargement of the 4th ventricle. I was told that if I have any severe headaches or vomiting then I have to go straight to my paediatrician sometimes microscopic cancer cells can be there but it is not until a tumour forms that symptoms start to occur. My reflexes and balance still continue to be worse on my right side than my left and my nystagmus is a continuing problem. I have no immunity to any illnesses, usually after chemotherapy the immunity levels build back up but mine have not, so I have to have numerous blood tests to see if there is another underlying cause for this. I am being admitted to hospital again on Monday for my glycogon stimulation testing and have been told that I will spend some more time in hospital for more tests that they need to do. The oncologist even suggested having a central line put back in for the tests and medication that I may need to have to save my veins. He also told us that the tumour in my pituitary was inoperable as it was too dangerous to remove, so that is why I had the highest possible doses of radiotherapy targeted at that tumour. The radiotherapy doses and remaining tumour is what is causing me so many pituitary problems now. Even though I sometimes feel like I have grown taller, whenever I am measured I have not grown at all, lack of growth is an issue that the doctors are concerned about and it is part of the pituitary function. I always remain positive though and greet each new challenge I face with determination and courage, you can never give up when you have an illness. Goood news was that he was so proud of my walking efforts and that made me smile.

Today I had to have a blood test, they did not want to use the vein in my right arm which is the best because it was still bruised from my last MRI. So they used a vein in my left arm, unfortunately part way through it gave in, the lady thought there was enough blood, but we received a telephone call this afternoon to say that I have to go back tomorrow morning again to give more as one vial had clots in it so it could not be used.

With having to go into hospital on Monday I am hoping that my veins are going to behave, I think that they will have to use the vein on my right arm as they have to insert a cannula on that day and a small vein is not going to work as I have to have blood taken out as well as the glycogon injected into through the cannula.

In the footy tipping last week I estatic to inform you all that I got all eight league games correct, that has put me further in the lead, with only four games this week I am hoping for 100% again. Nana and Pop have started to ask for a head start so they can catch up to me.

Tomorrow is Dad's Birthday and then Sunday is Mothers Day, both Mum and Dad are amazing people, they give me so much strength, love and encouragement I am so lucky to have such splendiferous parents and I love them very much.

I found a poem by Donna Fargo about a Mum that I would like to share with you all and I wish all the Mum's who follow my Blog a very Happy Mother's Day, I hope your day is filled with every happiness and that you are spoilt because like my Mum you deserve it. I think that all Mum's are the most extraordinary people in the world.

' My Perfect Mum'

Your heart is big.

Your love is pure.

You want the best for me

and care about everything I'm going through.

You love me without condition.

If I could choose anyone at all for my Mum,

I'd choose you.

You are my perfect Mum

and I love you and appreciate you

more than I could ever express.

A QUIET WEEK

2011-04-29T13:30:00.000+10:00

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.

A WEEK FULL OF APPOINTMENTS

2011-04-22T10:54:00.001+10:00

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.

A DIFFICULT WEEK

2011-04-16T11:25:00.001+10:00

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.

RELAY FOR LIFE, WOMEN AND GIRLS FUN RUN/WALK AND SOME VERY SAD NEWS

2011-04-08T16:11:00.001+10:00

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'

SCHOOL, ENDOCRINOLOGIST APPOINTMENT, DIETITIAN AND PHYSIOTHERAPY

2011-04-02T13:31:00.000+11:00

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'

A BUSY WEEK AT SCHOOL AND GREAT GRAN NOT WELL

2011-03-25T15:46:00.002+11:00

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'

TEST RESULTS AND SCHOOL

2011-03-18T17:52:00.000+11:00

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.

SLOWLY GETTING BETTER AND AUSTRALIAN YOUTH CHAMPIONSHIPS

2011-03-12T18:23:00.002+11:00

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.

NOT WELL THIS WEEK

2011-03-04T15:12:00.001+11:00

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.

A VISIT TO THE ZOO, PAEDIATRICIAN AND DIETITIAN APPOINTMENTS

2011-02-26T10:26:00.002+11:00

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'

WEEK 2 AT SCHOOL

2011-02-18T21:08:00.001+11:00

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.

MY 13TH BIRTHDAY AND BACK TO SCHOOL

2011-02-11T16:08:00.001+11:00

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.

A HOT TIRING WEEK INCLUDING A TRIP TO SYDNEY

2011-02-04T16:31:00.002+11:00

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.'

A HOT WEEK

2011-01-28T18:18:00.000+11:00

22nd to 28th January 2011

I have felt like I have been cooking in the oven this week with temperatures in Canberra soaring into the high thirties for most of the week. When we have it that hot it is also extremely dry and that really tires you, although I have heard that people who have had brain surgery are often more severely affected by extreme hot or cold temperatures and I believe this to be true. I find that both the scars the one where the tumour was removed and the one where the build up of fluid was drained became extremely painful even to touch gently and I feel this is caused by the extremely hot weather conditions.

This week I have visited my doctor to get a form to have a blood test prior to going to Sydney next Tuesday, whilst I was there I told him that I had been experiencing a painful right ear for a few days, he checked my ear and said it was not inflamed and then he found that I was getting some new teeth, my twelve year old molars and that had been causing my ear to ache.

All week I have been working with determination whilst sweating on all my physiotherapy exercises, I want to be at my strongest before I go back to school on 9th February because I know that school will zap my energy levels as being in Year 8 this year the work will be much more demanding.

I went to the orthopaedic surgeon with Nalani for her review, he was exceedingly impressed with her progress especially in the degrees she was able to bend it without assistance, however, her quad muscle is still slightly weak so he wants her to wear the brace for a little while longer for weight bearing so that it will heal and be stronger. She goes back to see him again on 7th March but in the meantime she is working hard on all her physiotherapy exercises. He also told her that when she goes back to see him in March that he will begin a program for her for resuming sport.

Tinkerbelle had her annual vet check up this week, she is in excellent condition, with the vet commenting on what a beautiful and healthy looking coat of fur she has, I had washed her the day before her vet visit and her fur glistened and felt as soft as fluffy white clouds. Mum's cat Paris also went to the vet with Tinkerbelle, Paris will be twelve in April, she is also in good health. She had to had what looked like a blood blister on one of her back paws pricked, a sample put on a slide and then investigated under the microscope. The vet confirmed it was a blood blister and thinks that because Paris is old that her blood is pooling in this one particular area and she will have to have it popped if it comes up again, she also mentioned that if it is still coming up regularly in three months that she has to go back to the vet to have it investigated a little further to eliminate a tumour.

My blood test was a breeze, I am able to sit calmly and it makes it so much easier for the blood nurse to take. I had to have an FBC which is a full blood count, I also had to have my calcium, phosphate and Vitamin D levels done, that meant they had to take two vials of blood.

Wednesday was an extremely proud day, because we celebrated Australia Day, we are so fortunate to live in such a free and splendiferous Country that has some of the most beautiful landscape in the world and such a diverse multicultural population. I eagerly went onto Christine's website of Australian Quotes and found so many inspiring quotes, the site again is http://www.australianinspiration.com.au/ it is marvellous just to look through it but is also a valuable resource for school projects, essays or speeches.

I am so proud of myself because on Sunday when Jarrett had running training at the AIS (Australian Institute of Sport) I took my rollator and with the spirit of determination in my heart, I walked one lap of the entire track which is four hundred metres, it was perhaps at a tortoise pace compared to what Jarrett was doing but I achieved a goal I had set myself.

Today was my haircut, I was so excited yet a little nervous at the same time, I has been almost two years since I have had a haircut! When the hairdresser began to cut my hair it felt wonderful, it made me feel gorgeous, which after all I've been through you don't often feel that way.

I have not received my final MRI results as yet, the preliminary results have shown that the remaining tumour has increased slightly in diametre but remains stable, there appears to be increased enhancement in my spinal region which may need further investigating hopefully I will know something on Monday before I have to go to Sydney on Tuesday to see my oncologist and have my lumber puncture. After my nightmare visit to Sydney at the end of last year I am a little fearful about this one but I will have the whole family there to support me.

NALANI'S 17TH BIRTHDAY, MRI, DIETITIAN AND PHYSIOTHERAPY

2011-01-21T17:05:00.001+11:00

15th to 21st January 2011

The floods have left Queenslander's with a huge clean up, broken hearted and grieving but they have strong spirits and will move forward, they will come back even stronger. Now the poor Victorians are facing a similar struggle with towns being cut in half and homes inundated with murky flood waters. Our lives are so unpredictable and are often at the hands of fate.

My week has been filled with appointments and an exciting event, Nalani's 17th Birthday which happened to also be the day of my MRI which I was fortunate enough to be able to have in Canberra, instead of having to travel all the way to Sydney for. Strangely, I was more nervous than I usually am, I have had to have countless MRI's throughout the course of my illness and normally I have butterflies but for this one they were fluttering more relentlessly than usual. Then I realised why, my first ever MRI had taken place in Canberra and had given me the news that I had a brain tumour. You won't believe this but I was in exactly the same MRI room as the one I had been in on that dreadful day, so my butterflies became worse and I actually think my stomach was doing somersaults. The staff were incredible though and put my mind at ease and even though the MRI took over an hour they were extremely thoughtful and calming. I do not receive my results until Monday and remain hopeful they will be positive. Mum was asked many questions throughout the MRI about remaining tumour and enhancement on my spine, a doctor was called in to look at the scans whilst they were being done but I feel that if anything was severe we would have been told on the spot. Following my MRI I had a splitting headache and ended up with a bit of an upset stomach, perhaps it was from the nerves.

Nalani had a splendiferous Birthday although she was not able to go out because of her knee, she had a marvellous surprise from some friends who brought her a cupcake with a candle in it that played Happy Birthday that put a smile on her face, she is fortunate to have special friends who are always there for her. She received some beautiful gifts and we had a special dinner and cake to celebrate.

Today I had an appointment with a dietitian who weighed and measured me, I have not grown any and she was happy with my weight, I do not need to up my intake but if I am feeling too full with the diet I have been given then I am allowed to decrease it. After the dietitian I had my physiotherapy appointment, I always love seeing Rhiannon and she was also pleased with me, my muscle bulk on my right leg has increased. She worked on my right foot which has still been giving me some grief over the last week and I have a new area that it is painful and that is up into my big toe which she feels is bone related not ligament related. I have a modified step exercise because my balance makes it difficult to do and I often topple when doing it. She also did some work on my right hand which is tightening up and actually quite painful when I use it to do writing or fine motor skills. I am so lucky to have Rhiannon she has been there for me from before my diagnosis and has made such a difference to my recovery.

I have been to the AIS for running training for Jarrett and have set myself a goal of walking with the assistance of my rollator the whole track which is 400m in total. I feel confident that I will be able to achieve this goal and then will continue to set further goals of greater distances over the year. I have learnt from last year that you start with little goals and gradually build up to the bigger ones, even though you really would like to achieve the greater goal first it is all about patience and taking care of yourself.

This year I hope to still continue to be able to inspire other young people who have to travel the same journey as I have. Raising awareness about brain tumours and funds that are needed to continue research to find a cure are a top priority as well as also raising awareness about side effects and moving on after treatment as I think once you have your treatment you are often forgotten and that road you travel then is just as difficult or more difficult than when you are first diagnosed and receiving treatment.

Every day I do my physiotherapy exercises, ride the exercise bike and do some stretches with Jarrett, I am determined to be so much stronger and hopefully compete later in the year in some sports events, not in a wheelchair but on my own two feet. I will never be the person I was before, in fact I think I am now a better person because I have lived the journey that changed my life and I have the courage to have ambition to continue some of the activities I used to do.

Tonight Jarrett is racing at Interclub, I love to go along and watch him, he really inspires me. Something else that really inspires me is quotes, I love reading them and making up my own, they have been something that has definitely helped me through some of the difficult as well as the good days that I have gone through on my journey. Christine who is an extraordinary lady began a project over a year ago collecting thousands of quotes by Australians as there was no national register of Australian quotes. As a special gift to all of Australia she is launching a special website on Australia Day http://www.australianinspiration.com.au/ it is hoped that Australians will use the site to draw inspiration, motivation and shape our hopes and dreams. I am so honoured because she has used some of my quotes on the site and I hope that my words may provide inspiration and hope to those that read them or use them.

Next week Nalani sees her surgeon to see when her brace will be able to come off it is now at ninety degrees and she is walking more easily although with a bulky brace it is not elegant but she has graduated from the chicken walk, she will also find out what lies ahead for her. Friday is haircut day, a huge day for me to finally be able to have what hair I have tidied up ready for school. It truly is the little things that really do count for me at the moment in my life and I appreciate them so much.

AUSTRALIA IN SHOCK OVER QUEENSLAND FLOODS

2011-01-14T13:27:00.001+11:00

8th to 14th January 2010

What a devastating week we have had in Australia, the destruction and loss of life that the Queensland floods have caused is just heart breaking. My Nana and Pop live in Queensland and I prayed constantly for their safety and that the floods would not break the 1974 record, my prayers were answered on both accounts but still there is just an astonishing amount of damage and sorrow from this tragedy. Now today we are hearing similar news from Victoria and Tasmania. So many lives are being changed but I heard one man say on one of the reports that even though he had lost his house and most of his possessions they could be replaced, it is life that can not and he is just so grateful to still be alive.

The journey these people have been on will now change their lives forever and they will grow stronger from it just like those that travel any difficult journey in their life time. It will also bring communities and the people within them together, bonding them in a special way. I have watched the reports on television throughout this week and I think that we are so lucky to have technology today that does make us more aware of what is happening around us.

We have had showers and overcast grey skies here in Canberra most of the week with rain predicted for the weekend, it is not like Summer at all. With Nalani having had her knee surgery and the recovery process being a slow one, having to be indoors has not been as mundane as it would have been if our weather had been glorious.

This week I have experienced some concerns with my right ankle and heel again, when I was walking using my rollator which I am confidently mobilising around the house with, I experienced sudden pain that was a throbbing, sharp pain that caused my ankle to buckle under me. I could not put weight on that foot for the rest of the day,spending the day using heat packs and panadol. Pain is a terrible thing to have to put up with constantly and I know that many people have to live with it every waking moment and that must be so difficult and impeding for them. My pain is something that brings tears to my eyes but at least it can be relieved and I am extremely grateful for that.

I have spent quite a bit of time working on art and craft projects this week, including making a special doorstop for Nalani for her Birthday which is next week. I have also completed one of my paintings for the auction this year and have almost finished the second one and I am so thrilled with what they look like and I hope that they will put some sunshine and hope into others lives.

Doing all my physiotherapy exercises to become stronger is extremely important to me because the stronger I am then I will be able to face any obstacles that are thrown my way and recover from them more rapidly than if I am weak. I can notice a considerable amount of difference between my right and left sides, my right is weaker and I often find it fatigues so much more quickly, fortunately I learnt to use my left to perform many functions that my right normally did prior to having my tumour.

My hair continues to grow slowly although it is patchy and was really very dry and wiry, my Nana gave me a special product to use on it called Argan Oil, it can be bought at a hairdresser and it adds moisture to your hair, it has helped mine to be more nourished and have some shine. I wish that there was a similar product you could use on your scalp as mine is dry and scaly. I am counting down the days until I have my first hair trim in almost two years, there is not much hair there to trim but it does truly need a tidy up so it does not look so wild and perhaps the trim will encourage growth.

Jarrett ran at the AIS last night at an Interclub meeting, he ran in the 3000m, he ran amazingly, he easily came first in quite a large field of all ages, he even lapped some people two times! He has been working hard on all his breathing techniques since being diagnosed with Vocal Chord Dysfunction and it has made a difference.

I have got back to playing Upwords again, it is such an enjoyable game and lots of fun for the whole family, I think I have recommended it before but I will do it again especially because so many people are stuck indoors because of poor weather.

Next Wednesday is my MRI , that is Nalani's 17th Birthday also, I have to admit that I am a little nervous about it but as always try to remain positive. You are trying to get on with your life and are reminded of what has happened to you every time you have to go for tests, I guess it is natural to be a little nervous. Sometimes I have headaches, seizures, pains or balance issues, I just try to ignore them and move forward and that is what is so important although it is also important not to ignore some things if you think that they don't feel right.

I believe that hope is such an important part of our lives and we should never give up hope even when our life seems like it has been turned upside down because through hope we could create a light that will become brighter and more clearer as we head towards it and find happiness.

Please pray with me for all the victims of the Queensland Floods that they will find strength, determination and spirit to move ahead from this devastating event.

HAPPY NEW YEAR

2011-01-07T16:27:00.001+11:00

1st to 7th January 2011

Happy New Year, my wish for everyone is to have many rainbow moments to treasure throughout this year and to enjoy the little things that life has to offer.

It is so hard to believe that one week of the new year has already gone by, this week has brought extremes in temperature here in Canberra, today we have had sunshine, winds and overcast skies, it looks as if it could rain later this evening, then rain is forecast from Sunday until Wednesday. We are fortunate though that we have not had to experience anything like the poor people of Queensland have with flooding that has caused so much damage and seen many people lose their homes and belongings.

Sadly my Nana and Pop had to head home on Tuesday, back to Queensland, I will miss having them being able to visit us and spend time with us but we can still talk on the telephone and email each other. They made it back safely although they had to travel through heavy rains and wet roads to get home.

We had air coolers running with the hotter weather and the constant loud humming noise that they made really irritated my ears and affected my hearing, I found it more difficult to hear so really relied on my hearing aid to allow me to hear conversations and television.

My MRI is scheduled in Canberra for 19th January which is Nalani's 17th Birthday so I am hoping that because it is on such a special day that I will have to receive a positive result.

I was walking on my rollator and my right ankle went from under me it twisted a little, was painful for a while but has improved now and I am back scooting around again, nothing can stop me.

Nalani and I have both had physiotherapy appointments this week, Nalani's knee brace is now set at thirty degrees which allows her to bend when she is walking, she still looks really awkward when she walks, her scars are healing really well which is terrific. She has physiotherapy again next week and will have her brace adjusted again to allow her knee to bend even more. At physiotherapy Rhiannon worked on my hamstrings, knee and ankle as well as my shoulder and right wrist which were stiff and sore. I also practised doing some stepping using phone books and holding onto a bench, it feels so strange to step and a little wobbly, my left leg is much stronger than the right so it is easier to lead with it but I have to practise with my right leading, it just feels like I might topple but by holding onto something that helps. I have my next physiotherapy appointment in two weeks.

We have been to running training and to watch Jarrett run at an Interclub meeting, Jarrett is running really well at the moment and is hoping to reach his peak by March, he has been selected to represent the ACT in the 3000m at the Australian Youth Championships.

I decided to give Tinkerbelle a makeover and spent some time filing her nails, brushing her, powdering her with baby powder which you can do with persian cats to make their fur look beautiful, I cleaned her eyes and her ears and tied an adorable bow around her neck, she looked purrfect just like a show quality cat and really enjoyed her special treatment.

We had a bit of an adventure with a little lizard this week, we heard Mum scream from the laundry, you know the type of scream many women do when they see a spider or a mouse, well Jarrett and I went to investigate and Mum told us that a little lizard had come in the door when she opened it to go outside, it had run under the washing machine. Mum and Jarrett attempted to get it out but it was so stubborn, they tried brooms, tapping on the washing machine and even using a blow dryer to try to encourage it to come out. Then Mum moved the washing machine it ran out and back under again, so we ended up giving up, closing the laundry door off so that the cats could not get in and try to get it or even worse eat it and wait for Dad to come home. Can you believe it, Dad got it out first go with a feather duster!

Apart from that we have watched some tennis and cricket and played Guitar Hero, Sing Star and Buzz Quiz games on the Play Station. Poor Nalani is not able to do too much so we are restricted also but just being together having fun is what really counts.

This year is going to be a splendiferous year that will bring many wondrous moments as well as I am sure of challenges because they are what make us stronger people, I am hoping to achieve some new goals that I set myself and continue in my endeavour to help others.

2010 COMES TO AN END

2010-12-31T12:05:00.003+11:00

25th to 31st December 2010

I can't believe that another year is almost over, it has been a year filled with many highlights like going back to school, doing the Cross Country in my wheelchair and walking over the finish line, getting a hearing aid so I could hear more clearly, Rhiannon organising my rollator for me so I can be more mobile, getting to meet Benji Marshall at Canberra Stadium, win the toss for the West Tigers and then present the trophy to Benji because they were victorious, receiving a telephone call from the totally awesome Short Stack - Shaun, Bradie and Andy and their tour member Liam when they were in Canberra for a concert, meeting some of the most truly inspirational and incredible people: Paul, Tess, Gavin, Ben, Carlos, Sarah, Stuart, Ally, Carol, Cate, Denis, Susan, Tracey, Christine, Tass - my number one Salesman and many others who made such a difference to my life

The most extraordinary event was on the 21st of April when I was granted my Starlight Wish and my book 'You Have To Go Through A Storm To Get To A Rainbow' was launched, that was such a magical day that I will never ever forget. The funds that my book has raised as well as other activities that I and others have done in the community will hopefully help make a difference to other children's lives who are facing or will face a journey like mine. My life long dream is to continue making a difference in what ever way I possibly can through raising funds as well as awareness, it is so important and if one person starts then perhaps many more will join and one day a cure can be found for future generations.

I hope everyone had a Merry Christmas filled with lots of joy, my Christmas was phenomenal being around my family. I received many wonderful gifts and enjoyed seeing the happiness and love that giving and receiving bought on the day. All the food I cooked tasted simply delicious, it was sad when we began pulling apart the meringue tower because it looked so beautiful.

Having my Nana and Pop here has been magnificent, because of Nalani's knee which is still recovering we are unable to go out much or do any sporty activities we have played some PlayStation games, in one Buzz game it was extremely close between Pop, Nalani and I, it was the last question and Pop got it right and won.

I will be having my MRI here in Canberra sometime in January, then I have to go to Sydney on the 1st of February I am hoping that I will have positive results. I have physiotherapy next Friday which I am looking forward to showing Rhiannon what I can do now.

As one year draws to an end and another is about to begin lets all remember not to concentrate on the negatives we encounter in our lives but to delight in any positives, big or small and our year will be more memorable.

Happy New Year everyone, thank you for following my Journey through the good times as well as the difficult times.

CHRISTMAS EVE

2010-12-24T20:37:00.003+11:00

18th to 24th December 2010

Christmas Eve is here, I hope that everyone has been nice so that Santa will bring you a special treat, it is also a time to reflect about the birth of a very precious baby, the baby Jesus. I have my stocking ready to put out, fresh carrots for the reindeer and a delicious treat for Santa.

This week has been a busy one it began with me using my rollator at the AIS while Jarrett was doing track work and I was able to walk from the two hundred metre start to the water steeple jump, a distance of about forty metres and then back.

In the afternoon I had a splendiferous game of Upwords with Gloria and Rosy, they had never played it before and we had a fabulous time playing it, it really is a fantastic game. I wonder if any of you will get it in your Christmas Stockings.

I have been dedicatedly working on my physiotherapy circuit of exercises that Rhiannon gave me to do and feel a little stronger every single day, that puts a humungous smile on my face and makes me feel so proud of myself.

On Monday I saw my Paediatrician and he was so impressed with my progress with my mobility, he has taken me off the phosphate supplements as my blood test showed an improvement in my levels, he is organising my MRI to be done prior to an oncology review and lumbar puncture in Sydney on 1st February. An issue that has to be watched is my height as I have not grown as I should be and that is a side effect of the high doses of radiotherapy that I had to have during my treatment, my paediatrician will continue to monitor this.

We have had quite a few visitors this week which reminds you that Christmas time is a time when people take the time to see those that they care about. I also sang some Christmas Carols as a gift to my family and Jarrett was my supporting act with his terrific version of We Wish You a Merry Christmas.

Nalani's knee is looking much better than it first did and she is working hard on her physiotherapy exercises hoping that in the New Year she will be able to bend her knee rather than having it straight all the time and so limited in what she can do.

Nana and Pop arrived from Queensland, Canberra is going to be much drier than Queensland for Christmas so I am so glad that they made it here safely. Today we spent the day cooking lots of scrumptious treats for Christmas. We made Coconut Ice, Vanilla Kisses, Mini Chocolate Biscuit Puddings, Dips, Chocolate Cake Pops, Apple Turnovers and my masterpiece was a Christmas Tree Meringue Tower which I have put a photograph of on this entry. I was exhausted by the end of our cooking day, but I had so much fun whilst doing it, everyone joined in and helped. Now all that is left is to eat it all over the next few days, I can hardly wait to taste it all.

Well, Christmas Eve is here and I have had such a huge day, it is now time for me to head off to bed, I hope you all have a very joyous and blessed Christmas.

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GETTING READY FOR CHRISTMAS

2010-12-18T10:45:00.001+11:00

11th to 17th December 2010

With Nalani off her feet and me still recovering from my cough we have had a fairly quiet week at home playing board games and watching numerous movies. Our weather has been far more pleasant than the wild rain and winds of previous weeks.

On Saturday Dad and I bought some new plants for my fairy garden, instead of being overgrown hiding my lovely fairies they are now visible and sparkling in the sunlight beside my delicate new flowers. I moved one of my solar lights to a higher level so that my garden can be seen more clearly at night time. Dad put clear estapol on my wishing well to protect it from the weather and it too sparkles brilliantly and looks ever so magical.

I remain on my phosphate, which I have to take two every day, I had a blood test on Thursday and see my paediatrician on Monday, he will review my results and inform me whether I have to continue taking them. I am excited about seeing him so I can show him how clever I have become at using my rollator to regain mobility. I am becoming quite a speed demon around the house using my rollator.

Tinkerbelle is extremely amused and entertained by the Christmas decorations we have put up, she sits on our entertainment unit and plays with the various decorations we have placed on the Christmas tree. We have Christmas lights in the windows and she loves to watch them change colour. There is a little gift under the tree for her and the other cats, I think she is going to love helping open it on Christmas day.

Nalani's knee continues to heal, she is not very mobile, I am more mobile than she is so that makes me feel terrific. She sees her surgeon on Monday also and he is going to remove some of her bandaging and readjust her brace so that she will be able to bend her knee a little, that will make a difference for her, having your knee straight all the time would be exceptionally difficult, when Nalani walks at the moment she walks like a chicken. We have all being taking good care of her, it will be fantastic though when she will be able to be more independent.

My cough has taken a while to improve, I still have it and I am taking my Bactrim to help it, it is more of a broken cough now which is better because before when I was coughing it felt like my chest was going to break, especially my ribs which hurt for a few days.

I still have my tinnitus which is the ringing in my ears, having had it for so long now, I forget what it is like to not have it. At night to help me go to sleep I listen to music, it blocks out the ringing a little because it is close to Christmas I have been listening to a Christmas CD, my favourite Christmas song is Silent Night. Mum used to sing it to me when I was a baby and when I was older to help me sleep, I think it is a beautiful song. I also love Santa Claus is coming to town, it is one of those songs that once you hear it, it gets stuck in your head.

With Christmas so close I have been looking through our cook books and have planned what I am going to cook this year, I am going to make coconut ice, apple turnovers, chocolate cake pops, vanilla kisses and my masterpiece will be a meringue tower tree.

Someone on my Blog asked me about making a donation for Christmas to the Brain Tumour Fund, it is The Sydney Children's Hospital Foundation Brain Tumour Fund and the address is The Sydney Childrens Hopsital Foundation Locked Bag 5 Randwick NSW 2031 and you make it attention to Tara Donnelly. This is where the money that I have been raising from my book, money tins, walk-a-thons, garage sales and paintings goes to, it goes towards research and rehabilitation programs for paediatric Brain Tumours. Another fund is the one that Dr Teo set up and that is the one that the Train for the Brain Fun Run and Walk raised money for and that is the Cure 4 Life Foundation that money also goes towards research for Brain Tumours.

I had physiotherapy with the wonderful Rhiannon on Friday and she is very impressed with my mobility and has given me some more strengthening exercises to do, I still experience pain from my stress fractures but I don't complain because there are people who are suffering more than I am.

Last night I went to the AIS with Mum and Jarrett to watch Jarrett run at an Interclub meeting. He ran in the 1500m handicap race, because he is so fast he was the last runner to take off, giving some runners a two minute head start. He flew around the track and by the final lap he had caught up to almost all the runners and finished fourth but he would have run the fastest time. There were disabled and wheelchair athletes competing also, I was in awe of their amazing abilities, the wheelchair athletes have so much strength in their arms. Watching these athletes really inspired me to push myself to gain strength so that I can be out on that track next season competing again.

Next week will be a busy one with appointments and visits from friends and of course it all culminates with Christmas Day a joyous and special time. I found a quote in a little book that I was given it is by John Greenleaf Whittier and it says "Somehow, not only for Christmas, but all the long year through, the joy that you give to others, is the joy that comes back to you and the more you spend in blessing the poor and lonely and sad, the more of your heart's possessing, returns to you glad". I think it really sums up that if you give to others freely and lovingly then your heart is filled with joy and your life is more blessed.

SCHOOL FINISHES AND NALANI'S SURGERY

2010-12-10T20:39:00.000+11:00

4th to 10th December 2010

This last week has been a busy one, it was the last week of school which is rather disappointing, I wish I had been able to do the full Term but there is always next year to enjoy. I feel so fortunate to have had a teacher who nurtured, encouraged and supported me, she is leaving and will be greatly missed by the School.

I had to go to see my General Practitioner this week as I had a burning, irritated throat, was running a fever and had a frightful cough, I felt dreadful but he put me on a course of antibiotics ones which also cover whopping cough as it is going around and he did not want to risk me getting that. My throat has improved, my fever has gone but I still have a nasty cough but am hoping it will disappear soon.

I have been practising my walking with my rollator and doing my physiotherapy exercising which Rhiannon who I think should be known as Super Rhiannon because she is incredible gave me to do on Monday. My stress fractures continue to heal but are still painful sometimes but I just try to ignore the pain and stop if it becomes too severe. I think Rhiannon was so excited when I walked into the physiotherapy room using my rollator, hey I am a little off balanced and limp and I am definitely not perfect but I am doing my very best.

This week I also found out that Sydney want me to have my MRI here in Canberra before the 4th January when they wish to see me again. I will only go to Sydney for one day and see my Oncologist and have my lumber puncture in same day. Then in April, I have a huge review which will mean I have to spend a week or longer there.

Today was Nalani's knee surgery, we had to be at the hospital by 7.30am, then her surgery was scheduled for 9am but she did not get operated on until 11.45am. The surgeon did a MPFL Repair and was extremely happy with the outcome, he even gave Nalani photographs from the actual surgery showing her what he had done, it was really amazing. She has a large knee brace on her leg, it has a special adjustment on the side that is set at zero degrees because she has to keep it straight. She was excited that it was only a repair because it will be a quicker recovery for her, she is able to walk on her leg but has to also rest it as much as possible. Poor Nalani though has been feeling a bit nauseous though, it could be from the surgery or from the strong pain killers she is on which are morphine based. Hopefully after a good night sleep tonight she will wake up tomorrow feeling much better. She was very brave and she told me she thought about a card that I had given to her and that inspired her.

The rain has finally stopped, the deluge we have received has been incredible, everywhere is so brilliantly green and water is abundant but it has also caused flooding which has damaged businesses and homes.

Christmas is only fifteen days away, it is a time to reflect and to give to others let us all open our hearts to those that have been through difficult times or who are struggling this Christmas.

BACK HOME AT LAST

2010-12-03T10:58:00.000+11:00

2nd December 2010

A wonderful follower on my Blog reminded me of what Dorothy from the Wizard of Oz said, that there is no place like home and that is so very true. My latest journey is like having being lost in another world where it was so dark and terrifying, I was so scared and confused and then finally I was seeing a light that kept getting brighter the closer I got to it and that light was the warmth and love of my family and home, I am now safe and happy.

I am not going to say much about what has happened to me other than I would say the whole experience was more terrifying and upsetting than going through Chemotherapy. I have put it in the past though and have grown from it.

It is so wonderful to be writing again, I missed it so much, it is an important part of my life and it gives me strength, I have decided though that I will update my Blog each week so it will not affect my health. Raising awareness about Brain Tumours will always be a goal I have, having goals in your life helps you to achieve your dreams.

I have been back at school and I am now looking forward to the challenges and successes of the school year next year and hopefully I will be able to be there more than the past couple of years, although continuing doctors appointments will keep me away some times.

Now I am back home I have been able to use my rollator, it supports me when I walk and helps me to build up my muscles that have deteriorated so much from having to stay in bed continually for the weeks I was in hospital. My right foot is still painful from the stress fractures as I begin to put weight on it again but my determination to be out of my wheelchair next year and more mobile helps me overcome it.

Christmas is getting so close, it is the most wonderful time of the year because it is about giving and loving, it is a family time and a time to reach out to others. Putting our Christmas tree up and decorating it was such a special ocassion for me this year.

Nalani has her knee surgery on 10th December, she is looking forward to having it done at last but is becoming a little nervous so I have been trying to help her not feel so afraid. I think if you try to always be positive and relaxed through situations that are stressful or upsetting it can really make a difference.

We have been having dismal weather here in Canberra, the rain has been falling from the skies continuously for a week, the grass is so green and our dams are abundant but as it is now Summer it would be marvellous to have just a little sun shinning through those thick, heavy rain clouds and smiling on our days.

Thank you to everyone who has continued to follow my journey, you are all very special and I am so inspired by all of you.

DAINERE BACK IN CANBERRA WHERE SHE BELONGS

2010-11-25T22:24:00.000+11:00

25th November 2010

With just a month until Christmas which is such a special yet busy time of the year, I am so pleased to let you all know that Dainere and Yvonne arrived safely in Canberra yesterday afternoon. They went straight to Canberra Hospital which we are pleased to report is a much more nurturing and clean place compared to Sydney.

Dainere now just wants to be back home in her own bed giving Tinkerbelle lots of cuddles, this has been such a dreadful ordeal for the whole family and one which we will try not to let dampen our spirits although it has tested them.

Thank you for all your patience and support throughout the past five weeks.

TRANSFER TO CANBERRA HOSPITAL NEXT WEEK

2010-11-17T21:09:00.001+11:00

17th November 2010

A little more positive news today, Dainere is being transferred to Canberra Hospital next Wednesday, there she will be in the capable hands of our own paediatrician. By transferring to Canberra it means that we never have to deal with the pathetic treatment we have been exposed to here. Even today we experienced the vindictiveness of a doctor who against other staffs advice would not discharge Dainere, which was extremely disappointing however we must look at the positive and that is being transferred to Canberra Hospital and treated by our own doctor and his team.

Dainere's MRI and Lumbar puncture have been postponed until January 2011, they had previously been scheduled for 6th December, however we do have to watch for any deterioration in her condition that would indicate changes in the tumour.

The strength and courage that Dainere has been able to display during this difficult, not to mention traumatic experience shows just what an extraordinary girl she truly is and perhaps some of the doctors need to take a lead from her.

We will continue to let you know her progress. Thank you again for all your support towards all of the family, we don't feel so alone through this because of all of you.

NEWS ON DAINERE

2010-11-10T22:06:00.000+11:00

10th November 2010

We just wanted to let you know how Dainere is going.

She is having difficulties maintaining her phosphate levels due to leakage from her kidney's which you already are aware have been damaged from the Cisplatin.

No results as yet on the bone density as they have new machinery which requires conversions to work out the exact results.

Her right foot continues to be painful with the stress fracture, they are looking at her having some physiotherapy of the non-weight bearing type later this week.

She is still off her caltrate as it was stopping the absorption of the phosphate also, she will remain off it and if her phosphate still stays the same then that is obviously the best they can achieve, so she will then be taken off phosphate and given caltrate as it appears she will have to remain on it permanently.

She is now classed as Stage 3 as part of the program, this is the final stage and leads to discharge, it appears it will most likely be in the next couple of weeks.

Once discharged she will be treated by our paediatrician and his team back home, she is not able to go to school for the rest of the year to assist her body to recover. This means that she has missed virtually this whole Term.

She is trying to keep her spirits up and be positive, she really misses family and friends back home, this has been rather traumatic for her. Canberra sounds like it has had many rainbows lately we think they are coming out especially for her.

Jarrett won the 5km Run in the Train for the Brain Fun Run on the weekend, which Dainere was extremely excited about.

Thank you again for your support and lovely messages which we have been passing on to our courageous girl.

AN UPDATE ON DAINERE

2010-11-06T08:25:00.001+11:00

6th November 2010

Latest news on Dainere is that following an MRI it has been found she has stress fractures in her right foot, this means she has to stay off it for a least another two weeks and then it is a slow recovery. She is disappointed about this but said she had a feeling it would show that as it was so painful.

She was seen by the Renal Team who told us that the Chemotherapy Drug Cisplatin that has caused her hearing loss is also causing problems with the kidneys, hers are not functioning properly and they are leaking phosphate, hence the difficulty in maintaining her phosphate levels. We were also informed that her Caltrate should not be taken with food as combines and makes it less effective and harders also to absorb phosphate.

Her treatment with Radiotherapy and Chemotherapy will have an effect on her bones and it is something that can be controlled with medication, we are still waiting for any results on the bone density.

Much to her delight, her NG tube was removed late yesterday afternoon, she no longer requires night feeds with the ensure. In fact she has put on more weight than anticipated by the nutritional team. Hopefully she will now be moved up to Stage 3 and progress home very soon.

We wish to remind you all that today is the Train for the Brain Fun Run and Walk in Canberra, hopefully there will be a huge turnout to help raise awareness and funds for Brain Tumours.

Despite what she has endured her smile continues to radiate the ward.

A PAUSE IN THE BLOG BUT WATCH FOR UPDATES

2010-11-04T01:22:00.001+11:00

Dear Wonderful Followers

It is with a heavy heart that we wish to announce that Dainere has been medically advised to take a little break from her Blog and be selfish, this is something Dainere has and will never be but apparently most teenagers are. It has always been her greatest dream since starting her Blog, which helped her through some dark days, to inspire, encourage, raise awareness and funds for brain tumours in the hope of finding a cure for all in the future. She has been devastated by this but she hopes to be able to continue her story at a later date. Inspiring others is a wonderful achievement, we are so proud of Dainere and hope that she will continue to share her gift of inspiring others. We invite you to still keep in touch as she gains strength and courage from you all.

As a family we have decided that Dainere's Blog and Dainere are important to many people so we will give you some regular updates on her health, of course it won't be written in her unique way. We would also encourage you to continue to help raise awareness about Brain Tumours.

Love Stephen, Yvonne, Nalani, Jarrett and Dainere xxxxxxxxxxxxxxx