IN SYDNEY STILL

29th and 30th October 2010

'There is a star that shines for me....it gives me love and sets me free.  There is a star that shines for me.....it shines for all tonight'

I saw this quote on a piece of artwork hanging on one of the walls of the hospital when I was allowed to go for a half hour walk from the Ward.  I am going to be in Sydney for a little while longer while they do numerous tests to try to find out what is going on with my body. 

My MRI has not been done as yet, so I still no answers about my foot, so until I have the MRI and we know what it is I am unable to do any weight bearing on that foot and no physiotherapy has been done.  I went for my bone density test though, it was similar to an x-ray but a machine ran over the top of me and took images, I had to maneuver into different positions that they told me to. The results of that should come back next week, it has already been established I have osteopenia but the bone density will determine whether I have osteoporosis also and then I will require treatment for that. 

I went to school in the afternoon only, I go with the High School students and we did some handwriting and I had to write a recount of my morning, I did not have access to a computer so this was difficult and tiring for me, my right hand became tired, so I changed to my left, it is so useful to be able to write with both, perhaps everyone should try it because you never know when you may need it.

The weekends are terrific when you are in hospital because tests can't be done, apart from my blood test which I have to have every single morning.  Mum is able to be with me for just about the entire day, Mum and I are very close, I love her so much.  She is also allowed to have dinner with me tonight, she has had to have take away because she was moving from place to place all the time, she said she felt like a gypsy but now she has a place for a few nights.  Mum has to bring her own food for the dinner and I have the hospital food, it will be great to have a meal with her and feel normal for a night.

I still miss home dreadfully but I have decided that the time will go very quickly and before I know it I will be back home with Dad and the others, in my own bed and doing the activities I love to do.  I wish that there was a children's hospital in Canberra, it is so distressing for children to be so far from home when they are not well, that is the time that you need to be in your home with all the people who love you.  Maybe there is some way that a hospital for children can be built, we are the Nations Capital after all.

Some good news is that my blood sugar levels which had gone high for no apparent reason and they were talking about diabetes have now come back down to a safe level, at least I have some good news to share.  I also have some non medical news to share about Jarrett, he ran at Interclub last night and in the 1500m he did 4:16:00 which is terrific because in March at Olympic Park he ran a 4:19:00 so that is a personal best for him, then he ran in the 400m and did 57:00, another personal best, I am so proud of him.  I am hoping that next year I will be there doing personal bests of my own.

Thank you again to everyone, you are all helping me to get over another hurdle, things are still not great but I have found that strength from within to move on, they can poke and prod me all they want and I will be courageous and accepting of it all, the one thing that truly hurts is Mum and I being away from Dad, Nalani and Jarrett.

LATEST UPDATE

26th to 28th October 2010

I have now been seen by a marvellous paediatrician who has looked into many aspects of my illness, surgery, treatment and how I am now.  It appears that this could all be an Endocrine issue which goes as far back as to the beginning of my chemotherapy.  Basically I stopped growing, I have not grown in a year, my tumour in the pituitary has stopped me growing and it can also affect your metabolism, so I now have to see a new Endocrinologist and it is likely I will be put on daily hormone injections.

My xray results came back, I do not have a fracture but I now have to have an MRI as it is suspected I have a stress fracture or severs disease which is a tendon problem.  I have seen a cardiologist and my heart is in fantastic shape, my seizures are from electrical waves in my brain that cross.

I am seeing a new nutritionist on Friday and physiotherapist.  Now under the care of a better doctor my storm is beginning to turn to a shower, I know that a rainbow of hope will appear for me.  This experience has affected me terribly but I will bring forth my strength and then I can only grow from it.

Today I have had art therapy and I am at school working on my Australian Studies Assessment on the Australian Flag.  I can hardly wait until this afternoon when I will see Mum and be able to tell her all about my day.

I miss my family, home and friends back home, it was a long, difficult year last year being in hospital and away, I thought that this year my life would be moving forward, I would be full of strength and happiness but obviously God's plan is for me to still have some hurdles to cross.

If you watch Parliament today, you may just catch a glimpse of our politicians wearing a grey ribbon for Brian Tumour Awareness Week.  I was supposed to be at a special morning tea at Parliament House today to celebrate, I am so disappointed that I could not share such an important occasion for a cause that I am so passionate about.

I wish to thank you all for your words of encouragement they have truly helped me through these last few dark days, I am so blessed to have you all in my life, you are my rainbows.

'When dark clouds fill your sky, remember the sun is always waiting to shine from behind" 

LOOKING BRIGHTER

This is Dainere's Dad writing to all her followers and viewers.
Dainere's treatment has taken a turn for the better and wants everyone to know that she is in good hands now as a new team has been formed to treat her.
She expresses her sincere thanks for all the wonderful support, comments and best wishes for her that people have written.
She'll be back at the computer real soon.


Take care and thank you all for your positive support.


Stephen

MY TRAUMATIC EXPERIENCE CONTINUES

24th to 26th October 2010

Having to be without Mum was absolutely devastating, I felt like I was been punished but for what crime I do not know.  I hugged Theodore as tightly as I could and he gave me a little comfort in this cruel situation that has left me feeling so confused and hurt.

When Mum arrived on Sunday at 9.30am we both hugged each other in the tighest hug you could ever imagine.  When Mum is with me I feel secure and safe when she is not there I am so scared of what may happen to me.  I have felt like a prisioner, treated like I have committed a crime but it is not me who is in the wrong, I have done everything possible in my journey to do the right thing, listening to the doctors, being brave and taking each painful procedure in my stride. 

I was told to walk which I am able to do a little of, but I was given no support and I do not have my rollator here so I was extremely off balanced and wobbled, my right ankle has been re-injured and is swollen and painful.  The fact that I have had a Brain Tumour has not been considered, I am not an ordinary twelve year old, I have been left with side effects from my tumour and the treatment, this is something I can not help.  It did happen and I can not change that so I am so confused as to why now it is not cared about.

Please if you are having chemotherapy and lose more than ten per cent of your body weight request that your doctor do something about it, don't just accept that you will pick up later.  Also when you finish all your treatment ask that you are given a dietary plan, I ate well but it was not enough apparently and now I find myself in this dispicable situation.  I want to help others so that they won't have to go through this. 

Dad arrived on Monday together he and Mum can work as a united front to sort this all out.  My paediatrician at home was looking after this, what has happened is not right.  Why am a pawn in the middle of this and being categorised without a proper assessment, I am confused and scared.

My ankle is so sore and swollen, I have to go to have an xray, perhaps some serious damage has been done to it.  Another hurdle and just when it was going so well, this whole experience has been such a horrendous storm but I still hold the hope and remain positive that my rainbow will appear very soon and my life can bring me some happiness. 

Life is too precious to waste, there are so many things I wish to do and this is wasting my time, that I can not go back and retrieve.  Thank you for all your support, comments and prayers I hope that I can update you with some positive news soon.

ARRIVING IN SYDNEY AND NOT WHAT I EXPECTED

22nd and 23rd October 2010

I was so nervous as I waited to go to the airport for my unexpected flight to Sydney, the butterflies were fluttering at a hundred kilometres an hour and did not want to stop, I also had this terrible feeling like the ones I had during chemotherapy when things did not quite go as expected.

In the morning when Jarrett and Nalani went to school, they were both crying and so was I as I gave them a huge loving hug.  Jarrett asked if he could come to the airport with us to say goodbye but we told him that school was more important. 

After checking in at the Qantas desk we were told that the plane we would be flying on was on the Tarmac and we would require a special lift to get me onto the plane.  We waited patiently for the special assistance person who was helping us to come.  We got to walk where all the action was taking place with the busy Qantas Staff getting everything ready for various flights.  I looked ahead and saw a spectacular bright pink Dash 8 aircraft sitting on the Tarmac, it was a special breast cancer one, it was our plane.  The special lift came and I got to go in a little wheelchair and went up in the caged lift, it was quite an adventure.  On the plane our seats were right near the propeller so I could see it slowly start to gain speed and take off.  I thought having a pink aircraft was a good omen.

On the plane I remained quiet and in deep thought, I know that I am a strong person and very determined but do I have to face this many obstacles and being dragged away from my home and family makes me feel angry and upset.  When I mentioned to the Airline Attendant that I was going to hospital in Sydney, he went and got me a whole pile of raspberry cream biscuits and said they would be better than hospital food!  That was so generous and thoughtful of him.

We arrived in a hot and streamy Sydney and I still had those butterflies fluttering around in my little stomach and then we went to admissions we were told that there was no bed available until 4pm and we had been told by our doctor we had to be there by lunchtime.  So we left our bags at admissions and went for lunch, I enjoyed some strawberry and cream pancakes with Mum and I had a Coke Spider, they put heaps and I mean heaps of icecream in a large glass and gave me the can of Coke, I poured a little in and immediately it bubbled and rose to the top of the glass.

Mum and I decided that because we had a couple of hours still to waste we would take a walk down to Coogee Beach, we were half way there when we received a call from the Hospital to say the bed was now ready.  So Mum had to walk back up the hill as quickly as she could and the hill down to Coogee is rather steep.

I was admitted and given a bed, I was expecting to see a Paediatric Cardiologist which is what we were told but suddenly I was surrounded by all these other specialists, I had blood taken, blood pressure done and weighed and measured, I had still retained the weight that I had put on when I was measured in Canberra on Monday so I was happy with that. 

Mum asked when the heart monitoring would begin and we were told that we would be seeing a Nutritional Team instead.  Mum was not impressed, all of this could have been done in Canberra under my wonderful paediatrician and if he had of thought it necessary he would have sent me to Sydney,  we had gone to Sydney and really had not needed to, I think they just like to control everything and don't think our doctors in Canberra are capable. 

Anyway while Mum was taken away to talk to a doctor, I was whisked away and a nasal gastric (NG) tube was inserted into my nose and down my throat, I had one after my surgery and it is the most uncomfortable feeling and it is difficult to swallow with it in. 

My weight has been slow to pick up since my ordeal and during Chemotherapy it plummeted and the doctor saw no real urgency about it.  I had just been eating  really well, putting on weight and feeling much better within myself so I could not believe they were doing this to me, I asked for Mum but they told me she could not be with me, I was so terrified I lost my voice, almost like mutism and could not speak but I wanted to tell them no! not without Mum, Mum help me!  I cried and when Mum returned from talking to the doctor she was taken by surprise, she had not given permission for this to be done to me. 

An EGC was done of my heart and everything was fine, bloods were done my potassium and phosphate were a little low so I was put on a supplement as well as some calctrate for my bones, this again could have easily been done in Canberra.  Through the NG tube I would be given Ensure at night it puts weight on rapidly but the only problem is that if it is done too suddenly then other problems can occur. 

I had a dreadful night sleep, I felt uncomfotable, frightened and just wanted to go home, Mum slept in a chair beside the bed and said it was terrible but at least she was there beside me as usual.

This morning things went from bad to worse, they gave me less food to eat than what I do at home, I can't understand what is going on and they are trying to say I am like an annorexic person, but I am not, I eat, in fact I have been eating well, I certainly don't make myself sick after eating or go out and do crazy exercising either. Mum is not allowed to stay with me and they are sending her to a Lodge it is like they are blaming her but my Mum always looks after me.

Worse still is that because of where I am, Mum can only visit at certain times from tomorrow, from 9.30am to 8.30pm tomorrow but on Monday I will only be able to see her from 4.30pm to 8.30pm, I am so frightened, I don't want to be alone, I am scared that they will do something to me again without Mum's permission, this does not seem right.  I know that my weight is a little low but Jarrett is on the bottom three percentile and he does not have to have this done, my Nana, Uncle and other members of our family are only small, they have fast metabolisms that burn fat quickly, I am probably like that it would most likely be hereditary like low blood pressure. 

My heart rate is perfect., my blood pressure and all my blood tests are good, I am in no danger of having a cardiac arrest now and probably never was and my seizures are exactly what my paediatrician said they were from the Brain Surgery, so I should now be able to be released home. My friend Emily was going to come visit me today to cheer me up and so was Tess but we were told to ring them and cancel it as they did not want me to have visitors.  I am not sick, I can not understand this, I have been crying lots and then they are trying to say it is about my weight but it is nothing like that it is because I want to be home, they won't listen to me, it is awful.

At least I have Theodore with me, he has been through everything and I know that through having him there again I will find the strength to get through this and get back home to Canberra as quickly as I can with my paediatricians help.  Thank you for all your truly wonderful and supportive comments as well as touching stories to help me through.

A TELEPHONE CALL THAT HAS TURNED MY LIFE UPSIDE DOWN

21st October 2010

This is a special Blog entry today, it is another twist in my journey which has turned my life upside down and has made me more disconsolate than even my diagnosis with a brain tumour.  Late yesterday afternoon we received the deplorable telephone call from Sydney.  They wanted me to organise to get there as quickly as possible because they had reviewed information about my seizures with other medical professionals, along with my weaker pulse and blood results, they are deeply concerned that what we have thought to be seizures may be mini strokes.  They are admitting me to hospital for tests with a Paediatric Cardiologist, you see there is a five per cent chance after having my high doses of radiotherapy and chemotherapy that there can be heart damage and the possibility of stroke.  Mum questioned some things and they told her that they felt they wanted to see me sooner rather than later and if anything happened overnight she was to take me to hospital immediately.  Well nothing did happen, except for my usual pain and joints stiffening so this call has left us all really puzzled.

Even though I face pain each and every day and I am debilitated when I do have the seizures which is what I will still call them unless diagnosed otherwise, I actually am feeling well considering all I have had to endure and will always retain a positive outlook, so you can see why this telephone call really hit me like a ten tonne brick.  I have so many wonderful events and experiences coming up at school and home, I don't want to miss out on any of them especially the fun run and my Raising  Awareness presentation, I would be absolutely devastated to miss them and there is no way that I intend to miss them.

Today I went to school, it was to help me to forget about the telephone call and it did because I was so occupied doing Australian Studies in which we were given an assessment task about the Australian Flag, it is an assessment where you have to put much thought and creativity into it.  After Australian Studies it was double Maths and we were working on a Rich Task where you choose the work you are going to do and gain stars for completing it.  I did a Glossary of Terms for Angles and earnt two stars and then did two worksheets they were both worth two stars each also.  We have to have achieved a certain number of stars by a given date.  Even though my mind was in a total whirl today, I am slowly starting to really comprehend angles, practise certainly does pay off. 

When we came home at Recess, Mum had to organise our airline flights for tomorrow, as well as reorganising and cancelling numerous appointments that we had.  Once at home Mum and I both sat down and cried together, Mum takes such good care of me and thinks it is so unfair that I have to face so many hurdles.  I just want to have a life, I am trying to move on and make the most of each and every day but this is like Mount Everest appearing in my path and I don't know how I am going to climb it.

In the afternoon we had running training, it was a lovely Spring day with just a gentle soothing breeze in the air, so Mum and I went for a walk around the oval in my wheelchair, the fresh air really clears your head, if I can't go over this mountain then I will go around it before attempting to climb it.  We saw a family of rabbits nibbling the lovely, thick green grass, normally as you approach them they hop away nervously but today one rabbit just sat there nibbling, we were so close before it hopped off into the safety of its burrow. 

I will keep you all updated on my progress in Sydney but now I have to go and pack my suitcase ready for our departure tomorrow morning.

'Sometimes we let fear stand between us and our rainbow but if we have courage, our hopes and dreams will lead us to our pot of gold in life'

SCHOOL AND BLOOD TEST

19th and 20th October 2010

The weather in Canberra is definitely improving which is wonderful because at this time of year we should all be rejoicing with warmer weather and longer daylight hours.  Yet again I had experienced a dreadful night sleep plagued with pain especially in my right heel, you know the kind of pain that no matter where you place your leg it seems to get worse rather than better.

This week is my two day week at school, I had Science first which we did some research on our Science Assessment in the Library.  I did some reading on the Moon and how it has different phases, it was really interesting, I will now look at the Moon differently when it appears glimmering mysteriously in the evening sky.  After Science it was time for English, we were working on a worksheet from the day before on Cathy Freeman, one of the activities was to find a page reference for a sentence that was written, I think doing this sort of activity really assists with research skills.  We then watched a You Tube documentary on camera angles in a motion picture, there are so many different ones compared to still photographs that we learnt about earlier in the year.  After English it was time for Maths, we are learning angles, this is probably the most difficult and challenging area of maths that I have come across this year, I will have to do extra practise so that I can really understand it with confidence.

When we came home at recess I was really exhausted, I needed to have a rest, afterwards I read Pocahontas, played Upwords and then we had to take Nalani to the doctors to have her wart scraped off and then refrozen, it was good news for her because it looks like there are no roots remaining so it should now disappear. 

In the afternoon I had pain and a stinging sensation in my left palm it was dreadful and nothing I tried would make it disappear.  Jarrett had running training and even though the weather was quite pleasant, I did not feel up to going for a walk around the oval in my wheelchair because the surface is a little uneven and the bumps would make my ankle and heel painful, I already had enough pain and did not want to have to have more to cope with, so I did some activities in a Christmas Activity Book.

I rode the exercise bike again at night time after dinner but not too close to bedtime, I was only able to ride for ten minutes because my right knee began to stiffen and click as I was pedalling.  I have not had too many problems with my right knee lately, most of my problems have been with my heel and ankle. When I got off the bike my knee was all hot and swollen and I was unable to bend it straight, Mum had to massage it so that I could straighten it out properly. 

During the night and early hours of this morning I woke with pain in my right hand, the pain then was accompanied by pins and needles which actually felt like they were vibrating all along my arm, I had nausea and then when I was sitting after breakfast something occurred, I had another seizure. The last thing I remember was having a little pain on the left side of my head and then my right arm had dropped again and was so heavy and painful, then I felt like I needed to sleep, it was like I had competed in the Commonwealth Games Marathon and I had no energy left.  Mum put a sling on it to elevate and support it which always helps.  I  could not move it at all but by lunch time today it has regained a little strength but remains painful and very weak. 

I had to have my blood tests done that my paediatrician had requested on Monday when I visited him, blood tests are simple, I sat there calm and smiling as the pathologist put the needle into my vein, I even watched the blood flow from my vein into the vials that it is collected in, some people are unable to watch as it makes them feel ill.  Usually the veins in my right arm are the best ones to take blood from they are larger for some reason but today they had to use my left arm because of my right one being in the sling and paralysed.  It was all over before I knew it and Mum applied pressure while the vials were sorted out then I was given a Tweety Band aid to go over the insertion spot. 

The sun was shinning from our brilliant blue skies in Canberra today, happiness filled my heart even though I was in pain and still felt 'strange' from the seizure.  I think of the sun as God smiling down on the Earth, in awe of all the wonders of nature and his love for all the people. 

It is difficult for me to type today because of my hands so I have kept it short and sweet, may love and hope fill your hearts when you look at the beautiful sunshine shining down on your life. 

STILL COLD ON SUNDAY AND PAEDIATRICIAN APPOINTMENT MONDAY

17th and 18th October 2010

On Sunday the weather still remained wintry with a wind that chilled you to the bone, yet if you found a sheltered corner of sunlight the glorious warmth provided a comfort, like a large, soft, fluffy blanket wrapped around you.  

Jarrett had his running training, Sunday's are always a long run from the AIS, he ran for an hour and pulled up strong which was terrific considering he had run 3.8km in total on Saturday night.  We went for a walk around the AIS and were lucky enough that most of the paths we took were sheltered from the wind.  

I came home and read, then played Upwords, as I was sitting playing Upwords, I had dreadful pins and needles travelling through my heel and ankle which was followed by pain which felt like extremely sharp needles were been dug into my skin and through to my bones, it virtually took my breath away.  I needed to sit with my feet up, heat around my ankle and heel and panadol to help ease the pain.  

Luckily by the afternoon it was feeling a little better because we were going to a working bee to help make ribbons for Brain Tumour Awareness Week for our politicians to wear on their last sitting day in Parliament. We cut, pinned and dipped the tips of the ribbons in glimmering silver glitter.  The ribbons are grey, when we speak of our brains we often hear them referred to as grey matter.  By the end of the session we ended up looking like fairies all sparkling magically from the glitter.  We also discussed the Train for the Brain Fun Run and Walk which is on 6th November, it is going to be a spectacular day and Sarah is really looking forward to pushing me.  The Train for the Brain Fun Run is being held at 10am at Lake Burley-Griffin.  The two primary goals of this event are to raise awareness in the community about brain tumours and secondly to raise funds for Dr Charles Teo’s charity Cure for Life Foundation.  If you are interested in being part of such a special day you can register at http://trainforthebrain.yolasite.com/ or from 8am on the day at the venue.

I was really fatigued and my hands were both inflamed and painful but helping for such a great cause was worth the pain.  After a shower and rest I felt more refreshed and decided after dinner to ride the exercise bike, even though it is not a weight bearing activity it is helping to build the muscles in my legs back up which have all withered away terribly from my treatment and not been mobile.  I rode whilst watching Junior MasterChef and ended up riding for twenty minutes, at the completion of my session I found that I felt a little dizzy as well as my ankle was really swollen, I did not realise when I was riding, it was probably because of the distraction of watching television. 

Snuggling up in bed with a hot water bottle and my bears comforted me and I just wanted to have a good night sleep.  I can't understand why I must be plagued with pain and stiffness throughout the night, again I did not sleep well, when I don't sleep well neither does Mum, I wish that both of us could just be blessed with one night that we sleep without disturbances. 

The sun greeted us this morning but it was deceiving because the wind had a chill factor that was like being locked in a huge meat freezer.  I did not have school today which I was relieved about because my weekend craft activities had left me with weakened hands especially my right one.  I did some reading while Mum did some housework and then I worked on my Raising Awareness Integrated Studies Assessment Task, as I typed up my research notes I was amazed at the statistics about Brain Tumours.  Did you know that three hundred children in Australia each year are diagnosed with a brain tumour, men are more likely to have a primary tumour than women and that brain tumour research receives only a minimal amount of funding from the Government compared to other types of cancer.  All the more reason for me to remain passionate about raising awareness and funds for Brain Tumours.  Once I present my information and action plan at school I will write more that I have found out and what I hope many Australians can do to raise awareness.

Even though I enjoyed working on my project, it really fatigued me, so I needed to have a rest, I fell asleep for half and hour.  On waking I played Upwords, Disney Princess Memory Game and did some physiotherapy for my left wrist by working with playdoh. 

In the afternoon I had a splendiferous visit from Anna, you may remember me posting a picture on my Blog of my book visiting Greece, well Anna is the wonderful person who took it over there.  She shared my story with all her Greek relatives and one of her relatives Popy sent me a beautiful message on a digital postcard of Greece she said "We hope that every child around the globe takes courage and strength from you.  I was really moved after reading your book and I assure you that all my Greek students will learn your story and how special you are".  I was so touched by the message and it made me realise how important to everyone it is to share my journey and to continue sharing it. 

It was then time to go to my appointment with my Paediatrician, he is a very caring and understanding doctor, he did a thorough examination of me.  I have put on a little weight and now weigh 29.3kg, but my height has not changed any and usually for a person my age you are going through a growth spurt.  The radiotherapy can cause this to occur and that is why the endocrinology team are looking at the possibility of me having to have daily growth hormone injections.  My blood pressure was good, my pulse was a little low and my skin was cold to touch, I had no ankle jerks when they were tested.  We had written a detailed description of what occurs when I have had seizures and on what dates, he is going to monitor them and if they become more frequent I will require medication however it does have side effects so he does not want to rush into giving me that particular medication.  I have to have blood tests done on Wednesday and he will then contact us once he receives those results, more tests will be organised based on those results.  He is contacting my Sydney team tomorrow and he wants to monitor me more closely, I now need to see him every month. 

I am going to ride the exercise bike now, when I am doing that it helps me to feel that little bit free and normal.  My heel and ankle are deplorably painful but if I can just get my muscles that  bit stronger each day I will be able to take small steps, I think I will set myself a goal of being able to walk with my rollator two laps of the kitchen and family room by Christmas. 

I found a beautiful Irish Blessing I would love to share with you all, thank you for always supporting me, I am truly blessed.

'May the wings of the butterfly kiss the sun

And find your shoulder to light on,

To bring you luck, happiness and riches

Today, tomorrow and beyond'.

A WET FRIDAY AND SNOW ON SATURDAY

15th and 16th October 2010

We had a barrage of continuous rain falling steadily overnight and the grey, thick,  heavy clouds appeared to be ready to dispose of their abundant load throughout Friday.  As anyone with any sort of bone or muscles complaints knows when it is damp and cool the condition becomes worse and my body felt just like the dogs breakfast a total mess.  I ached, it hurt to move and the pain caused me to feel miserable, yet I knew I had to go to school. 

The rain was accompanied by arctic winds that whipped and swirled around my umbrella that I was attempting to keep myself dry with on our journey to school.  The wheelchair went through deep puddles of water along the footpath and it was a day that you could easily have just given up and stayed in the warmth of home.

We entered the classroom a little wet and cold but we were able to warm up as the classroom was much warmer than outside.  We had Integrated Studies first and were doing a Quiz on Government, we were put into groups and Mum was told that she could not assist our group.  We did extremely well and ended up coming second overall.  I realised afterwards that I should have had the group use my FM Transmitter so that I could hear what they were discussing more clearly but it does take just a little time to set up and the questions had already started to be asked. 

After the Quiz we had double Science, our lesson was in the Library and the Computer Room because we were given our assessment task which is also due in Week 4, the same as our Integrated Studies one on Raising Awareness.  We were able to choose which topic we wanted to do our assessment on and then researched it in books and on the computers.  A really strange thing happened to the computer and three others around me when I was using one, it totally blanked out and so did the other three, no one else's in the room did, it was really weird and the teacher had no explanation for it either. 

I was so pleased it was time to leave school and go home because it was too wet and cold, my pain was becoming worse and I just wanted to be able to warm myself up.  The wind had increased and I could not find the best way to hold my umbrella to prevent myself from getting wet, I ended up with extremely wet legs and feet, I had to be dried off and changed when we arrived home.  A lovely hot chocolate warmed my inside up and we turned the heating on to warm our body on the outside. 

I did some reading, had a rest , took photographs of my Christmas Bear for a collage and dressed my Barbie dolls.  I was so pleased to be warm and dry, unfortunately my pain did not ease much during the day even with the heating on, heat packs and pain killers, I guess sometimes when the weather is the culprit there is not too much you can do, you have to just grin and bear it which I am quite expert at doing.

My night was plagued with pain and discomfort, I woke several times throughout the night and early hours of the morning, then I slept in until 8.30am which is unusual for me. I felt a little nauseous upon waking probably from lack of sleep.  Mum came and got me and told me she had something special to show me, she took me to our family room window and there outside were soft, delicate flakes of snow falling from the sky, some had settled under the trees in our back garden but most were melting once they touched the ground.  It was a Winter wonderland and I was totally in awe of what I saw, snow falling is so exquisite.  The weather was freezing so I did some reading, learnt Baa Baa Black Sheep on guitar and typed a Christmas list. 

Fortunately as the day progressed my nausea improved, I wish my pain would do the same, but because it was so cold my pain had remained fairly intense throughout the entire day.  Jarrett had Interclub which is the Summer Competition of Athletics, it was on in the evening, we all had to rug up as if we were going to the snow; gloves, beanies, scarfs and jackets.  Jarrett ran in the 800m first, he was in the second heat, it was a curved line start, the gun went off, the runners took off but Jarrett slipped on the starting line and was coming last, however around the first bend he had fired and took the lead which he held until the finish to come first. After I saw him fall I willed him to do well, I was even almost running with him, I was moving my legs up and down in my seat in the Grandstand.   While Jarrett was running Nalani was working as an Official, firstly she was on Shot put doing the recording and then on Javelin which she collected the Javelins to take back to the competitors.  Jarrett ran the last event of the evening which was the 3000m that is seven laps of the track and they start at the 200m mark.  This time Jarrett had a good start and was running up with the elite runners in the first few laps, he ran a terrific race to be the first Junior runner across the line and he had no asthma or vocal chord problems although he said he had to use one of his breathing techniques half way through and it worked. 

We came home for a hot chocolate and to snuggle into our lovely warm beds, it had been cold at the AIS but we were sheltered from the winds in the Grandstand so it was not as harsh as it was if you were out on the track.  My feet had got a little cold though even with thick socks and enclosed shoes and my ankle and heel throbbed in bed, so Mum gave me a heat pack which made a huge difference and I eventually fell asleep.

'Never give up, keep racing your race because those that love you will always be there gently lifting you and  pushing you along'

ELECTIVES, ACT CROSS COUNTRY CLUB PRESENTATION AND TINKERBELLE'S 1ST BIRTHDAY

13th and 14th October 2010

During the night the rain came tumbling down, the heavy drops were battering rapidly against the windows and the ground was saturated. The damp weather made my right ankle, knee and heel pound with pain and my left wrist became stiff and painful, hurting even to bend slightly.


The heavy rain continued into the morning so I had to arm myself with my umbrella before venturing outside to go to school. Even with an umbrella my legs and feet still got wet, which made my heel and ankle ache more severely. Once in the warmth of my dry classroom I began to dry off and felt a little more comfortable. We spent the first half hour at school discussing our Integrated Studies Task and what the different possibilities were for topics.


We headed into French with the rain still bucketing down in torrents, this Term we are learning French directions ready for our assessment which will be using a map to give written instructions in French for a person to find certain locations. I am actually finding the vocabulary used for directions much more simple than for food. This is a short Term so we have a lot to fit into a short period of time.


From French I had to put my umbrella up to head across the bridge into Senior School where my Textiles classroom is. We finished off our keyring weaving that we began before school holidays, I was really pleased with how mine turned out. I then started on a different type of weaving, it was one using a card with four holes, one in each corner, I had to thread a piece of wool through each hole, then I had to have the card in the middle and tie a knot at either end of the four pieces of wool. I then cut a piece of wool to weave through, you went through the space then you turned the card on a new axis and weaved the wool through again, you kept repeating this, what it makes is a friendship bracelet, I have not quite finished yet but it won't take long next lesson to complete it. Then we are going to begin knitting, I can hardly wait to do this because Mum has already taught me to knit and I have become rather expert at it, although if I have problems with my hands then I am unable to knit.


The rain had eased slightly as we signed off for the morning and began our walk home, Mum even commented that it looked as if it was pouring, then suddenly a deluge of rain began to fall and we were caught in it, fortunately we were almost home when this happened, my feet and legs were wet and had to be dried and Mum who can't carry an umbrella when pushing my wheelchair was soaked to the bone.


After drying off we had a hot cup of milo which warmed us up from the inside, I needed to have a rest, I was feeling fatigued but my left wrist was also swollen and painful, I enjoy my textiles and it was becoming painful but I did not want to say anything, I think I should have because the pain had begun to shoot up to my elbow and then it was difficult to bend it.


I did my physiotherapy exercises but did not ride the exercise bike because my ankle and heel were too inflamed and painful, I did some reading to myself and Mum and I had a game of Upwords.


We heard from Sydney and had to contact my paediatrician and I have an appointment late on Monday afternoon, he will then do a thorough examination and organise tests that I need to have done, after that the results will be communicated to my Sydney Team.


At night we had the ACT Cross Country Club Presentation Night, it was extremely exciting because Jarrett won a medal for being the U16 Male Champion as well as a Goblet and large Trophy for being the Junior Male Runner of the Year 2010. I was so proud sitting there seeing Jarrett receive his awards, he truly deserves them because he is so dedicated to the sport and his training. I think receiving the awards will also boost his confidence after his problems with his asthma and diagnosis of vocal chord dysfunction. Jarrett is always so humble when he receives awards and he told me that the awards that he won were for me also because I inspire him in his running.


I was extremely tired as we drove home in the rain and I fell asleep in the back seat of the car, Mum gently lifted me out but I woke up. I had a warm cup of milo and went to bed hoping for a decent night sleep. I would love to announce that I had a marvellous night sleep but unfortunately yet again I had another disturbed night again with pain and joint stiffness, one day, I will eventually have an uninterrupted night, I can only dream that will be soon.


Today was Tinkerbelle's first Birthday, I had made her a rainbow pom-pom ball and when I gave it to her she played with it for ages, picking it up in her little paws and throwing it, pouncing on it and just lying with it and patting it ever so often from paw to paw. Tinkerbelle has comforted me, loved me unconditionally and made me laugh often, she was a wonderful gift and I love her so much.


I worked on my Integrated Studies Task today, doing up a mind map of what I would like to include in my presentation. I am so excited because when I do my presentation it will coincide with International Brain Tumour Awareness Week, so I am hoping to actually encourage people to take part in at least one of the activities that are organised to raise awareness.


Working on my project tired me, so I had a rest before answering some emails and watching Disney Beauty and the Beast which is my favourite Disney Princess Movie because Belle is such a strong, unique and caring person, she overlooked the ugliness of the Beast to see his true inner beauty on the inside. So many people are wrapped up in what they look like on the outside and forget that true beauty comes from within you and makes you more beautiful on the outside. I have scars, no hair in spots and a different shaped skull now, I don't care, because it is not what is on the outside, I am warm hearted and my inner glow is what makes me special.


We went to running training and Mum finished reading the Cathy Freeman book 'Born to Run' to me. She spent seventeen years waiting for her dream to come true of winning a Gold Medal at an Olympics, she achieved that goal through determination and dedication despite her background.


Tonight I rode the exercise bike for fifteen minutes but my ankle and heel were in agony so I had to stop. I tried walking a little but found my heel had the most terrible tingling in it which made my foot jump up each time I attempted to put any pressure on it.


Tomorrow I have school again, I have Integrated Studies and double Science, it is also supposed to rain again, there are reports that we are to have 50mm of rain overnight with the rain continuing tomorrow, our dams are now at their highest levels in eight years.


'Believe in yourself and all you want to be, see your challenges and changes as something that will help you reach your dreams'

TERM 4 BEGINS

11th and 12th October 2010

My stomach was churning with butterflies when I awoke on Monday morning, I had mixed feelings about returning to school for Term 4, I was filled with excitement to actually be attending school for the year, yet I was also nervous,as school does pose some difficulties for me.


The weather was overcast and on the walk to school light droplets of rain fell intermittently from the heavy grey clouds. Chapel was first, which I think was an excellent way to begin the Term, we sang a song which always lifts every ones spirits and then we heard about David and his psalms. He was a lonely Shepherd with no one for company apart from his sheep and he was a talented musician. He spent his hours writing his psalms which he put to the music of his harp. We learnt that when David prayed to God he did not only pray to him when he wanted help or when things went wrong, he also prayed to him in wonder and awe and in times when he was filled with happiness. We too can learn that prayer is a very special gift and you don't have to only pray when you want to ask for your life to be made better, praying for joy is a wonderful thing to do.


After Chapel it was time for PE, I was filled with enthusiasm, I always enjoy PE, however the class were doing the twenty metre beep test, which is a running test to see what an individuals endurance is. Even though I could not participate my teacher let me record the class results. While we were on the oval it began to drizzle with rain which made it quite miserable and cool. The class are going to be doing gymnastics this Term, this will be difficult for me to participate in, so I am a little disappointed.


Next it was time for Integrated Studies, our unit of study this Term is Active Citizenship, I think I am going to thoroughly enjoy this topic especially because our assessment is to do an oral presentation on raising awareness about an issue in our society, I have chosen to talk about raising awareness about Brain Tumours, I am hoping that this will help my class mates further understand what it is all about and how they can help me to help others. We also had to write a list of words and what we thought they meant and then we had to write a reflection on what it means to us to be an Australian Citizen.


When I signed out in the front office for the morning the ladies commented on how well I looked, that made me feel really terrific. I was tired from the morning session and my heel had been distressing me throughout the morning but as I have stated regularly I am trying extremely hard not to let it get to me.


I had a rest when I came home and a welcomed warm drink and morning tea, after resting for an hour I then felt like reading a book and that is exactly what I did until it was time to return to school for the afternoon session.


In the afternoon we returned to school for double English, we are reading the novel Born to Run by Cathy Freeman, I would rate this as the best class novel I have ever had to read, I think it is because I have an interest in athletics. We are also going to be writing a script for a part of the book that we would like to turn into a short movie. We are also doing poetry which is something that I relish in. I was quite fatigued by the end of the school day and could hardly wait to return home for another rest, I am feeling very positive about this Term and think I will be able to cope with the work.


I was able to use my FM Transmitter with my teacher, she has used one before so felt comfortable with it, I found it did make a difference and it was like having her right beside me explaining everything, the only time I had some problems was when the class noise level became louder, I then had to adjust the volume much higher than the audiologist and I had originally anticipated.


Whilst watching the Commonwealth Games on television I had the most torturous pain in my right heel that left me feeling sweaty and in tears. It came on suddenly and I was not even doing anything, just sitting there watching the television. Mum massaged it and applied ice, then heat as well as giving me a stronger pain killer, it eventually eased but was still rather painful when I went to bed.


I woke a few times throughout the night with my heel and ankle in pain and also to go to the toilet a couple of times, sometimes my bladder seems to be a little weak and I have to go to the toilet often, I am not sure if this from my chemotherapy.


Today I did not have school, so I could rest in bed a little longer. I read, played Upwords, answered some emails and had a sleep today. Mum and I are reading the Cathy Freeman book together and we are over half way through it, I would like to share part of a prayer that is in the book "Oh God, guide me and protect me, illuminate the lamp in my heart and make me a brilliant star....". I did my physiotherapy exercises and rode the exercise bike but could only tolerate it for five minutes because of my heel.


My Sydney doctors were supposed to contact my paediatrician to let him know what tests they wanted him to do and then he was to contact me to organise an appointment, we heard nothing either yesterday or today so I am not sure what is happening, I find this very frustrating, I guess that is what happens when you have doctors that are Interstate.


We had running training in the afternoon and as we drove we had a shower of rain which came out of nowhere, the smell of the rain was so revitalising and fresh but as quickly as it came, it disappeared. Jarrett ran exceptionally well during training and had no problems with his asthma or vocal chords. He is racing on Saturday night, it is the beginning of the Summer Competition, there is just one problem, it is only supposed to be twelve degrees here on Saturday, that is almost like Winter, so hopefully it won't be too cold for him.


'I believe that if we worry too much then we waste a lot of our precious energy, we need to appreciate and enjoy each moment of every day'

END OF SCHOOL HOLIDAYS

8th to 10th October 2010

'When a door closes if we look for an open window then we will eventually feel a breeze blow into our lives that gives us hope'

Although my pain continues, I try to conquer it each and every day, I don't give up, I don't sit around feeling sorry for myself and I try not to let it stop me from smiling. My right ankle, heel and left wrist are distressing me but I am rising above the pain as best I can. I am using pain killers, heat, massage and deep heat to assist as well as the power of the mind, I am going to beat this pain eventually.

Friday was a magnificent Spring day in Canberra, the birds were chirping melodiously, the sun sparkled like a diamond and the air was clean and fresh. We played Upwords and Guess Who and went outside to bask in the glorious rays of the sunshine. It was virtually the perfect day, one that you want to freeze in time and not let go of.

My trip to Sydney has been postponed, my paediatrician will now do a thorough examination, bloods and a weigh and measure next week, he will report back to the Sydney Team who will then decide where to go from there. I have been keeping a record of my food intake and my seizures so that it is all documented for my doctor. It is actually a relief for me not to have to go on Monday because it is the start of the last Term of school, I have already missed so much school last year and this year it has been difficult, I just want to be part of my class and enjoy our last term together, a term that is usually filled with many exciting events.

Jarrett had a sports massage, it was a deep tissue one, this is to prepare him ready for the Summer Athletics Season, he, like me suffers from tight muscles and even though he religiously stretches every single day he just needs those muscles to be loosened to assist been able to stretch more successfully. Nalani was very interested in what the sports massage therapist was doing, this is something that she is looking at studying when she finishes school next year. Poor Jarrett though, a deep tissue massage is neither relaxing or painless, it actually leaves him a little sore, then a couple of days afterwards, he feels fantastic, he says it is all worth it then.

We had another game of Upwords and watched some more of the Commonwealth Games on television, it is wonderful how well the Australians are doing as well as some of the less known countries who are receiving medals for the first time in the history of their Country competing.

Saturday morning Jarrett had running training at the AIS, they could not work on the track because the Transplant Games were on, so they did hills at the back of the AIS, by the end of the session, Jarrett's legs were tired from the sports massage. He had no problems again with his asthma or vocal chord dysfunction so is really encouraged by this. While Jarrett was training, Mum, Nalani and I went for a walk, the sun was trying to break through the early morning cloud cover and once it did, it was a beautiful morning.

We played Upwords while having a cup of tea and then Mum and I went for a walk to Gungahlin, I found that my heel was so painful, just a slightly bumpy surface made it throb with dreadful pain which I would rate at a nine out of ten. I had to lift my foot off the footplate on the wheelchair to try to eliminate the pain, then Mum checked my ankle and found that it was swollen as well. If my ankle had not been injured in Sydney at physiotherapy when I was there in September then I probably would have been much more mobile, using my rollator, but it has really delayed my progress and that for me is so frustrating. I had been able to walk around the kitchen and into the family room which would be about thirty metres but now I can't even bear to put weight through my right foot and with my left wrist being weak and sore I can't grip the rollator either. Never mind, I am going to be determined and I do try despite the excruciating pain but I don't want to further injure it and make it worse either.

I rode the exercise bike for ten minutes yesterday, it was only slowly because the rotating motion caused pain in my ankle and heel but I rode a little over one kilometre, at nine minutes I was in sheer agony, I was crying and Mum told me to stop, but I had set myself the goal of ten minutes and I was determined to achieve that. I have also been doing my strengthening exercises every day just hoping that this will all assist in the healing process. I think sometimes I become impatient and want it all to be fixed straight away but I have to accept that it does take time unfortunately.

We watched more of the Commonwealth Games, I was so excited to hear that Louise Ellery, the athlete with a disability who we have actually met, won Australia's first Gold Medal for Track and Field, she won in the shot put, she is a truly inspiring person and is someone who always has a smile on her face.

I love to read, however I have discovered that reading out loud is a difficult task for me because of my hearing loss, I am unable to hear or concentrate on the story, then I am not able to comprehend what I have read. If I read to myself I am able to comprehend much more clearly or if someone else reads to me, that is much easier also. I am learning what my limitations are and that you have to accept these and find an alternative to what you may have been used to doing.

The wonderful and talented Christine sent me her three books, 'Tahlia, You Can Do It!', 'In The Garden Of My Delights' and 'The Hidden Journey', they are marvellous books and all very different. Mum is reading 'The Hidden Journey' to me as it is a touching and emotional story about her husband's battle with a melanoma.

Another sleepless night with pain especially in my heel but I was up ready for running training this morning. The day that greeted us was not ideal, it was rather overcast and a little on the cool side, but it did improve so that we could go for a walk around the AIS whilst Jarrett went for his long run with the squad. The birds were all extremely vocal this morning and we even saw a couple of kookaburra's serenading each other along the trail.

I did some more reading, looked through some recipe books for dinners for next week and went grocery shopping to stock the cupboards ready for our return to school. After lunch I made some Chocolate cupcakes with strawberry icing for Nalani and Jarrett to have on their school lunches tomorrow, they love it when I cook for them.

Tomorrow at school I have Chapel, PE and Integrated Studies in the morning then I will go back after lunch for double English. I will be able to use my FM transmitter for the first time with my teacher and I am excited about the prospect of being able to hear so much more clearly within the classroom, I think this Term is going to be fantastic!

PHYSIOTHERAPY AND BLOOD TEST RESULTS

6th and 7th October 2010

It is dreadful to never have a night without waking to either go to the toilet, in pain, with joint stiffness or nightmares. When you don't sleep well you wake feeling tired and then to have to try to function during the day, this is not always easy, however I am not one to sit back and feel sorry for myself even when I honestly feel atrocious. I always try to do my best and stay totally positive and focused.

Wednesday was supposed to be overcast and wet but to my surprise the sun was shinning down from the sky, it was like everyone in heaven was smiling down on the Earth and delighted with what they saw. We played Upwords and Guess Who, we sorted through Christmas decorations to see if we needed anything new for this year and Nalani and Jarrett helped me print out photographs for my photo frame for Mum.

In the afternoon we made Mum a Chocolate Mudcake for her Birthday, it smelt so mouth watering scrumptious when it was cooking in the oven and it looked a treat once it was iced with a sweet, chocolate fudge icing. We could hardly wait to taste it at dinner that night, we were having dinner for Mum the night before her Birthday because on her Birthday it was running training so dinner is later.

We had a barbecue chicken and salads for dinner, Mum loves salads especially potato salad and coleslaw so we made sure we had those. Then it was time for the cake, Mum was amazed, I thought she might cry, we decorated each piece with strawberries and cream, we gave Mum extra cream and strawberries! It tasted even better than it looked and everyone was left with the feeling they had just tasted a piece of paradise.

After dinner we gave Mum her presents and she actually did shed a tear when I gave her the photo frame that I had made, she put it on her bedside table so she could look at it just before going to sleep and first thing when she wakes up, the photographs I put in it were one of me with Theodore and one of Mum and I. We also gave her a hair straightener, earrings, perfume and a top. Dad gave her a voucher to have her hair done, she has not been to the hairdressers to spoil herself in over twelve months so she really deserves to have something lovely done for herself. Nana and Pop gave her a really beautiful hand bag, purse and a skirt. Mum said she really loved all her presents but the greatest gift was been able to be with all the family this year to celebrate her special day.


We watched the Commonwealth Games then on television, I am enjoying watching the cycling and was hoping to be able to watch the athletics but that was on way too late for me although with waking during the night I could probably sit up and watch the Games to put myself back to sleep.

Light rain gently fell from the sky overnight, providing a refreshing drink to all the flourishing Spring lawns and gardens. The morning was overcast which I was disappointed about because I wanted the sun to shine brightly on Mum's Birthday, eventually the clouds departed as they were whisked away by a chilly Spring breeze and the sun shone brilliantly for Mum.

I had physiotherapy with Rhiannon and I could hardly wait, my left wrist had given me grief during the night and perhaps due to the rain, it was extremely troublesome this morning. Rhiannon worked on my ankle which is still painful to put too much weight through and we mentioned that my heel had also been giving me some pain so she checked it only to discover that it was all bumpy, she described it like lots of rice bubbles, this is caused from my ankle injury, muscles and nerves in other areas become affected. Then she worked on my wrist and even though it was painful when she checked it, when she massaged it, I felt such a relief from the pain, it was marvellous. She then gave me some exercises, one with a rubber band and one with some play doh it is to help maintain muscle strength even though it is painful so that I will be able to grip things like cups and my rollator. I don't know what I would do without Rhiannon she is like a guardian angel, looking over me, helping me when I need it most.

We had time for a game of Upwords before having to go to the doctors for my blood test results, they were extremely interesting. It appears that I have an elevated ferritin level which can occur when you have high doses of chemotherapy but it should have come down by now, it can then be indicative of an infection, inflamation or liver disease. I also have a low serum/plasma folate level which is often associated with malabsorption. My vitamin B12 level is elevated and this can be from liver disease or myeloproliferative disorders. I have low phosphate levels and should be having a phosphate supplement and high Urea levels. My thyroid function in also on the low side. My doctor wants me to have the blood tests redone in one week to see if there is any change in the results and then wants to do further investigations. He thought that Sydney should have picked these up when I was there, he is particularly concerned about the folate and ferritin.

Nalani also had to see the doctor because her wart that she had frozen and then cut has come up again, it is actually a little painful so she had to have it frozen again and she has to go back in two weeks to have it cut and then re-frozen again, hopefully this will get rid of it permanently although she may have to have it frozen a few more times.

We had running training in the afternoon, Jarrett ran fantastically and with no asthma problems, he was able to use his breathing techniques and is finding it easier each time. We actually noticed that one of the Australian Cyclists was using breathing techniques similar to Jarrett's prior to their race.

Jarrett looked up the results of the athletics results and found that in the 5000m that the time he ran of 15:58:00 would have placed him in 20th place, his time beat the time of three athletes that were in the Commonwealth Games, that really gave him confidence and inspired him. Melissa Breen who runs at the AIS was in the 100m heats and she has qualified for the finals, it would be incredible if she won a medal, we have seen her run often and she is simply magnificent.

My hand is aching but I just had to type my Blog it is so important for me to share this journey with you all.

SOME RELIEF IN MY RIGHT ARM

4th and 5th October 2010

I was so miserable when I woke on Monday morning, even though I had regained some use of my right arm it was still extremely weak and painful and my left wrist was a total right off, it was swollen and I was in agony. I feel terrible when I complain, there are people out there who are so much worse off than I am and it is extremely selfish of me to feel sorry for myself. These are the times when I have to summon courage and pull myself out of the hole that my pain has put me in.

I played Guess Who with Nalani and Jarrett and then we went to Belconnen to do some Birthday shopping for Mum, her birthday is on Thursday, I have already made her that special photo frame but she deserves some spoiling. My pain bothered me while I was at the shops but I did not want to complain or let it spoil the day. Fortunately, we were able to find exactly what we were looking for quickly and I would say it was quite a successful shopping adventure.

We watched the Commonwealth Games on television, the Opening Ceremony was full of colour and excitement, I was intrigued by the sand art, it was incredible, those men were so talented. Seeing the Australian team march out into the Stadium made you really proud to be an Australian and knowing that some athletes that we have actually met will be competing makes it all the more spectacular. I hope that Jarrett will achieve his dream of representing Australia one day in long distance running and I will be there to see him marching into a Stadium.

In the afternoon we met Tass and Gloria at Federation Square for afternoon tea, we always enjoy their company. Tass has sold 269 of my books, that is why he earned the title of Number One Salesman, he is hoping to reach 300, that would be a mammoth effort and cause for celebration. There are not many books remaining from the original two thousand, it looks like a reprint will be going ahead before the end of the year, there is a possibility that every school library in Australia will purchase at least one copy. If a reprint of five thousand books is done and all those books can be sold, that will mean $64, 750 will be raised for Brain Tumour Research, to be able to give that much to help other children in the future would be the most wonderful achievement for me. If through my journey and my wish I can actually make a difference in the way Brain Tumours are treated and aim towards an eventual cure how splendiferous would that be! I am still convinced my journey has been given to me for that reason - to really change the world in the area of Brain Tumours.

When we were coming home from the afternoon tea, I looked out the car window and saw the most resplendent rainbow, arching luxuriously across the afternoon sky. I was wondering if it was a rainbow for me, sent to help take away my pain and give me hope for another day.

Last night whilst nursing my painful wrist, arm and ankle I watched the Commonwealth Games, I actually enjoyed watched the female weight lifters, I saw the 48kg class, that is Jarrett's weight and they were lifting up to 77kg, it must put such a strain on their backs and knees. I went to bed still in pain but hopeful that in the morning I would have some relief. I listen to music to go to sleep as I still constantly have ringing in my ears the music provides a distraction to the ringing.

My night was interrupted as usual, however some marvellous news was that my right arm had improved when I woke, although I could not grip anything and it was still painful and weak, at least I had some use in it. Perhaps that rainbow yesterday was sent especially for me to ease my symptoms slightly and a little is better than nothing at all. I had to have my left wrist bandaged though as it gives it some relief and support, I also required the stronger pain relief.

I played Upwords with Nalani and then Guess Who with Jarrett, it is fantastic to have them home with me and being able to spend time with them. They are so busy with homework and other activities normally that we don't have as much time as I would like to spend together.

The skies were a luminous crystal clear blue and the sun was radiant with fluffy, delicate, cotton wool like clouds drifting gently across them. We had some bills to pay, banking to do and finishing off Mum's Birthday shopping, so went for a vigorous walk to Gungahlin. I love the sun warming my petite body, it did not ease the pain in my wrist, ankle and knee but it always brightens my spirit.

We have running training this afternoon and I am hoping that the sun will remain as lustrous as it is at present so we can go for a walk around the oval while Jarrett is training. I am still waiting to hear from the IPC people in regards to my classification as Jennie thought it should be lower, hopefully we will hear before summer competition begins on 16th October.

I have a doctors appointment on Thursday to find out results of my recent blood tests and to see if he has received any information from Sydney, also Nalani has to have her wart frozen again as it has come back up, not as large as last time but it has reappeared, this is quite common and hopefully one more freezing will get rid of it.

'When clouds finally clear, when pain eases just a little , when you see the first sparkling star at night that is when hope has come and brought a rainbow into your life'

MY WEEKEND

2nd and 3rd October 2010

I am determined not to be vanquished by my pain which still torments me every day, stronger pain killers do assist but they don't take it away completely and often they only numb it for a short period of time, not even long enough to last until my next dose of medication. My night had again been thwarted with pain in my left wrist and right ankle, it not only keeps me awake but also Mum who continues to be my rock, always there no matter what time of the day holding my hand, been my personal nurse and doing everything she humanly can to try to help.

Overcast skies were present as we drove to running training for Jarrett at the AIS, Dad had left at dawn to go to work, so it was just Mum, Jarrett, Nalani and I. Tiny spits of rain appeared on the windscreen as we drove but nothing major came of it. Jarrett was doing 300m repetitions and he was flying, his new breathing exercises seem to be assisting him although he did say that at a high intensity it is more difficult to concentrate on them than doing them just at home or when doing a gentle run however with more practise, it will become second nature to him. I miss my running and I know Nalani does also, sometimes I close my eyes and visualise myself running, my feet pounding fast on the ground as they hit the synthetic surface of the track, the wind blowing my long, curly hair and feeling so free and joyous.

When we came home from running training we played my card game Happily Ever After and then I rode the exercise bike for five minutes, that was all that my ankle could handle without the pain level becoming too intense. We then played two games of Upwords and on both occasions I was able to use all my letters up.

We had a down pour which took us all by surprise and saw Mum racing outside to get the freshly washed clothes off the line, Jarrett helped her and luckily the clothes were only a touch wet and not soaked. We had to pick Dad up from work as the bus time table on the weekend is sparse with buses only coming every hour.

Mum and I were meeting Briana, Taylah and their Mum for afternoon tea at Central Cafe. I have mentioned Briana before on my Blog, she had surgery on her leg, she was in a wheelchair for a little while and we were going to have a race but never got around to it. She has now fully recovered and is even back to playing netball, I am so pleased that everything went so well for her she is a really lovely friend. It was so wonderful to catch up with them and all their news as well as sharing our news. I find though that I am tiring so easily lately, I think that my pain causes this, as well as a lack of sleep.

Nalani and Jarrett watched the AFL Grand Final, Nalani is a St Kilda supporter and Jarrett was going for Collingwood. Nalani was so disappointed with the game especially after how close it had been the week before, perhaps the result would have been different if they had of played extra time last weekend instead of having to replay it a week later.

Last night we had take away dinner to Celebrate Dad's promotion to his new job, we are all really proud of him. We then watched a free Paddle Pop movie I had got in a Total Girl magazine, it was actually quite good, it was an adventure, mystery movie, with a villain and everything.

Daylight savings began at 2am but before we went to bed we wound our clocks forward one hour. Overnight it poured raining, I heard it because I had woken several times throughout the night with pain in my left wrist, right ankle and pain in my right arm. When I was in the bathroom this mornign I felt a little strange, I called to Mum, she came and then next thing I knew my right arm had dropped again and I felt so exhausted. I had experienced another absence seizure, Mum said that my eyes had dilated again and I had gone all distant again. I had to put my arm in a sling again because it was just hanging there, painful and throbbing.

We had running training this morning, the rain had stopped but the sky was ominous, those clouds looked like they were going to open up and let a flood of rain come out any time. While Jarrett went for his long run, we went for a walk, it was quite humid even though it was overcast, the fresh air raised my spirits and we saw the rabbits again outside their burrows along the walk, they are growing so quickly and don't seem to be as afraid of people now.

After running training we headed to the Runners Shop, Jarrett wanted to buy some new spikes to wear for racing on track, after trying on several pairs he decided on Addidas ones that were black and red and very light weight, I think they will help him to run even faster.

Coming home the rain began, it was a light drizzle, then heavier spots, it stopped and then we had patches of rain. It was a good day to play Upwords, we scored for the first time ever and Jarrett won one game and then Nalani won the next one.

My right arm is still totally useless and typing this is causing my left one to ache even more severely. I am having difficulty in holding a cup to drink so have to use a straw, I hope that my right arm will mend quickly, last time it had improved by night time so I am being positive and hoping that it will heal as quickly this time.

The NRL Grand Final is on this afternoon, I wish the Tigers were there, they really deserved to be this year but I guess it was not meant to be. I know some people who would really love the Dragons to win but I don't particular like either team.

I wish to thank everyone that has been commenting on my Blog, I love hearing about your lives, having you encourage me and providing me with positive thoughts, every time I read them you give such hope.

A PAINFUL LEFT WRIST AND SHOPPING AT DFO

30th September and 1st October 2010

Another month has slipped by so rapidly, before we know it we will be into the Year 2011. September ended with me being in terrible pain in my left wrist and to my disappointment it has not improved for the first day of October.

I was kept awake finding it difficult to get a comfortable position to have my wrist without it causing dreadful throbbing pain up into my arm. Mum used massage, heat, elevation and those good old pain killers to try to relieve it for me, eventually something worked and I was able to gain a little sleep but before I knew it morning was upon us and the sun was streaming in the window.

We had a quiet day on Thursday and as I was still suffering from pain we could not really go out and do too much. I was able to do some of my physiotherapy exercises but my wrist has stopped me from making any progress now with my rollator, I can't put weight through it or my right ankle this is so frustrating, how am I supposed to go forwards when these things occur that set me backwards?

Fiona from the Parish paid a visit which was lovely, I find trying to go to Church every week difficult as we go at night time and by then I am just too fatigued and sore to go, perhaps when daylight savings and the weather really warms up, I will be able to find the strength to go more often. We said Mass and I used a verse that Sammy who has been writing to me, wrote in a letter, it was Proverbs 3:5-6 - Trust in the Lord with all your heart, and lean not on your own understanding. In all ways acknowledge him and he will make your path straight. We then said some prayers and had communion. I think that my belief that Jesus is with me stepping each step that I take helps me on some days, if he is there he will look after me even when my path may seem difficult and hard to bear.

We called Nana and Pop to have a chat, it was lovely to talk to them, I thought our weather was not the best but they have had so much rain up there, although it is good for the garden it is eroding the beautiful beaches.

I played Upwords and then we watched the Legendary Journey's of Hercules, it was then time for running training, the wind had really turned southerly and chilly so we watched Jarrett do his training from the car, he did extremely well and was able to try practising his new techniques to help his Vocal Chord Dysfunction, he said it was a little tricky but as time goes by he will be able to master it while he is running at an intense pace.

My wrist was not improving, it was aching still and my right knee and ankle had also become worse than they were earlier in the day. We still do not know exactly what is happening with appointments and tests that the doctors wanted me back in Sydney for from 11th October, I guess we will eventually be informed.

Another night of disturbed sleep from pain and being woken by Cosima licking my head with her large, pink sandpaper tongue. When you don't have much hair which I still don't, most of my hair is at the back, the sides are extremely bare unfortunately and when she licks it is the most unusual feeling.

An overcast first day of October greeted me this morning however the clouds disappeared and the sun shone through for a pleasant Spring Day. My wrist was still painful and each time I try to use it, it is so weak I am dropping things, my right ankle was also in pain this morning and it hurt when I attempted my physiotherapy exercises. I was still unable to do any practise with my rollator as my wrist has no strength and my ankle was too painful. It is like walking a path and coming to an enormous mountain that you can't go over, under or around you just have to try to work your way through it and that takes time.

I played Upwords and then we decided to go out to Fyshwick to DFO just to get out of the house and also to see if there was anything there we could buy for Mum's Birthday. We did not see anything for Mum but Nalani got a bargain on a couple of tee shirts and a CD , I got some pretty pink flower hair clips and a gift for a friends Birthday. Just being at the shop walking around and I can't even walk, I am being pushed tired me so much and I found that sitting in the wheelchair with my leg down my right ankle swelled dreadfully and was then even more painful, on the trip home I fell asleep in the car.

In the mail I received my next MRI appointment which is on 6th December, so it looks like I will be in Sydney the first week in December, earlier I had been told by my medical team that the MRI would probably be done in January unless there was something to be concerned about. We did not even expect to receive this appointment, I could not believe what time it is at either, 6.20pm!

My Dad had some spectacular news this week, he applied for a different job, one that he is hoping will give him more time to spend with the family as well as doing the type of work he loves to do, anyway he found out that he was successful and will be starting his new job on 4th November, he is going to be the Grounds and Facilities Manager at the two campuses of the School. He has been working at the Race Course for 26 years, he knows there like the back of his hand, it was a difficult decision, but he feels confident that he will be able to use his fantastic skills in his new job to be a true asset to the School.

I played the Nintendo DS Game Are you Smarter than a Fifth Grader and I found out that I was, wow, when our Prime Minister went on the show, she was not even smarter than a fifth grader, so that made me feel quite proud of myself, I did have a little help from Nalani though so I guess we are both smarter than a fifth grader.

This is from the Foot Prints in the Sand verse, so many people love this and have mentioned it to me throughout my journey this is a part that really strikes a chord with me, especially at this present moment - "I love you and would never leave you, during your times of trial and suffering when you see only one set of footprints it was then that I carried you".