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.