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.'