Friday, February 11, 2011

MY 13TH BIRTHDAY AND BACK TO SCHOOL

5th to 11th February 2011

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

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

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

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

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

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

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

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

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

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

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

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

Friday, February 4, 2011

A HOT TIRING WEEK INCLUDING A TRIP TO SYDNEY

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.'

Friday, January 28, 2011

A HOT WEEK

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. 

Friday, January 21, 2011

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

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.

Friday, January 14, 2011

AUSTRALIA IN SHOCK OVER QUEENSLAND FLOODS

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.

Friday, January 7, 2011

HAPPY NEW YEAR

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.

Friday, December 31, 2010

2010 COMES TO AN END

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.