A SPECIAL RIDE AND WEEK 8 AT SCHOOL

24th to 30th March 2012

This week has been Week 8 at school, only two more weeks until school holidays and both of them are short four day weeks with Easter.  Despite tiredness and some increased pain, I have been totally determined to be at school as I really enjoy my learning.

Before I tell you about my week at school though, I have to tell you about something extraordinary that I did on Saturday.  My Uncle James owns a classic mini and after telling him that going for a ride in it and blowing his very entertaining musical horn was an activity I would really love to do, he excitedly took me for that special ride and as we returned up our street, I got to blow the musical horn all the way up the street.  I had a huge smile on my face, I had a splendiferous time and it is something I will remember.

My Special Ride in Uncle James' Mini

Now for school, in Maths we are still learning about probability, it is actually a difficult concept but once you 'get it' it is rather easy. This week we looked at Representing Probability, tree diagrams and sampling with and without replacement.   In Sports Science we have been working on Sports Nutrition and today we just commenced work on the human body systems, I have been waiting to do this as I have learnt so much from Nalani and Jarrett about Anatomy already.  In English we have been doing some Grammar work as well as learning how to do a persuasive essay.

I have a Sports Science Assignment where we have to keep a physical activity and nutrition log each day for seven days and then next week we will have an open book assessment based on the information we have written down.  I also have a Math probability assignment based on the what we have learnt in class. 

On Tuesday I had physiotherapy, Kaitlyn worked on my back, buttocks and legs, she found my spine was a little croaked so she did a gentle release on it.  I had heat put on my neck and back and was given two new exercises to do. 

Today I had my flu injection, it did not hurt at all going in but after it came out it really stung and throbbed.  At least now I will be protected from the flu which in Canberra during the colder weather affects many people. 

My wonderful Occupational Therapist, Tom came this week with a special bath seat to help me get into the bath and also some bull horns for the toilet to make life just that bit easier for me.  Then today I was surprised with a ergo-tilt which you use at school or home to put your work on so that you do not have to bend your neck so much.  I feel very lucky to have this new equipment and know that it will make a difference for me.

I am so looking forward to competing in the Women and Girls Fun Run on Sunday, I am so determined to beat my time of 49:47 and coming 628th for the 5km event.  I am hoping that the forecast of showers will not occur until after the race is over. 

I hope that my West Tigers can find some inner strength and determination and win their game this weekend, it is very disappointing to see them sitting in second last place on the ladder at the moment.  I am still coming last in footy tipping, Nana and Pop are now equal and I am one behind them.

Next week will be a busy week not only with School but also I have an appointment with my paediatrician, physiotherapy and I have my School Cross Country on Thursday which I am very excited about. 

Sending you all many rainbows to fill your week with the most precious memories that will make you smile and brighten the lives of all those around you.

BACK TO SCHOOL FOR A BUSY WEEK

17th to 23rd March 2012

After resting for a week to recover from my radiotherapy treatment it was back to school this week. As we are in week seven at school it has been a time of tests and assignments.  I had a Maths test which was on our unit of indices and we have now moved onto a unit on probability.  I also had a Sports Science test on fitness and health.  In English we watched the movie Tomorrow When the War Began, it was quite different to the book but I still really enjoyed watching it and seeing the characters grow and develop as the movie progressed.  We learnt a new term about analysing a scene it is called 'Mise-en-scene'.  This refers to everything that appears before the camera and its arrangement like composition, sets, props, actors, costumes and lighting.  It also includes the positioning and movement of the actors on the set. 

I had a visit from my Occupational Therapist, I have a new one and he is really terrific, he is going to help me to be able to do things at school and home that I am having trouble with, with the assistance of special equipment.  He is going to visit again next week and we are going to try some equipment out.

Since having my radiotherapy I have found that my pain has reduced although not gone completely and at times it does become worse.  I am still a little tired from the treatment but I am determined not to let that stop me from doing the activities I really love.

I am hoping to be able to compete in my School Cross Country next month and also the Women and Girls Fun Run which I participated in last year and had lots of fun, it is a 5km event and you can run or walk.  OvCan ACT is the official charity partner for this event, they are a small not for profit organisation that was established eight years ago to raise local awareness about the symptoms of ovarian cancer. This type of cancer is one of the most lethal of the gynaecological cancers and affects around 1200 women each year in Australia. In this event only women and girls can enter and there are prizes for various age categories and other special categories.

Autumn has truly arrived in Canberra, with the weather cooling down significantly and the leaves on the trees are beginning to change colour, amongst the green leaves there are some golden yellow leaves peeping through.  I found out that as Autumn approaches and the weather gets colder the trees realise that winter is near so they get ready.  A thin layer of cells grows over the waters tubes int he leaves and closes them up in preparation for Winter, no more water can get into the leaf.   Without the water the green chlorophyll starts to disappear and the other colours in the leaf, like yellow can finally be seen, so really the leaves don't turn a certain colour, they just lose their green.

In Footy Tipping Nana has now slipped into the lead, but only by just one point to Pop and then I am one point behind him.  I have already got the two games right from last night so hopefully that will help me catch up. 

May your week ahead be filled with many rainbow moments and may you open your eyes wide, enjoy the beauty of nature and find something to make you smile, by smiling it is like having the sun shine in your day despite any hurdles that may come your way.

RESTING AFTER A BUSY WEEK

10th to 16th March 2012

After a busy week of appointments and treatment last week, this week was a time for me to rest and recover.  My Grade were at Camp so it was actually good timing because I have not missed any school and have had the chance to let my body recover ready for next week.

Radiotherapy can have side effects like tiredness, dry skin and stomach problems, I have experienced these along with another side effect of having some difficulties swallowing, I was relieved to hear from my Radiation Doctor though that this can occur but should only last for about five to ten days following the completion of radiation. 

Monday was Canberra Day, it is an annual public holiday  to celebrate the official naming of Canberra.  Canberra was named at a ceremony on 12th March 1913 by Lady Denman, she was the wife of the then Governor General Lord Denman.  Next year will be a very special year, it will the hundred year celebration and many special events are planned.

I was fortunate enough to have my Nana and Pop come down from Queensland to visit, we went to the Lifeline Book Fair together, had lunch and spent precious time together.  I love my Nana and Pop very much and enjoy seeing them.
I had physiotherapy which I am now having weekly and was so relieved to have Kaitlyn work on my legs and back, she even did some ultrasound on my back to see if that provided me with some pain relief, then I had three heat packs which soothed my pain.  I am so fortunate to have had such a wonderful Physiotherapist in Rhiannon and now Kaitlyn as they can provide me with pain relief and mobility.

Summer Interclub Competition has finished, so I do not have any throwing events until High Noon Competition begins in April.  I am pleased that I will be able to throw during the Autumn/Winter while Nalani and Jarrett are competing in Cross Country. 

I was so disappointed that my Tigers lost last week and again this week but I know that they will be able to turn everything around in the next rounds, I believe in them.  In Footy Tipping Pop is ahead of Nana and I by one point at the moment so it is very close, he is confident already that he is going to win this year but I am pretty good at making come backs.

'Every day, what ever you do, no matter how difficult the challenge always look for your rainbow, use all your strength, never ever give up and do your best'

IN SYDNEY FOR RADIOTHERAPY

3rd to 9th March 2012

This week we have seen some wild weather around many parts of Australia, in Canberra prior to leaving for my week in Sydney we were inundated with drenching rains, gusty winds and high humidity.  Roads have been flooded, people evacuated and homes destroyed, the weather is so unpredictable, like cancer, you don't know whether you will experience bright sunshine filled days or days where you have a storm to fight against.  This week I returned to Sydney for five radiotherapy treatments which are aimed at reducing pain and slowing my new tumours in my spine down.

My journey began on Sunday when Mum and I flew to Sydney, because the weather was so miserable the flight was delayed by half an hour, when we were eventually able to board the airplane which was an ATR Virgin aircraft we had to board on the tarmac.  Although we had an umbrella, the rain was pelting down and the wind was lifting the umbrella Mum was holding to try to keep me dry, she had to hold it with two hands and still struggled, I thought she might fly into the sky.  We arrived in Sydney to beautiful blue, sunny skies which we had not seen in Canberra for a while. 

We were staying at Ronald McDonald House and were pleased to arrive and began to unpack, however that was interrupted by the sound of the roaring fire alarm, we had to move to the evacuation area and wait the arrival of the fire brigade.  After thoroughly checking the building, we were given the all clear to return to our rooms.  Ronald McDonald House is a fantastic place for families who are having treatment at the hospital to stay. 

Monday was my first radiotherapy session, it was so different to the way I had it before, this time I did not have to lie on a beanbag or have a mask on.  I just had to be lined up and have my head in a special plastic headrest and lie supine (which is to lie on your back).  The treatment was extremely quick, compared to my prior experience and it was at a much lower dosage.  Before I had 58.8 Gy and 36.6 Gy this time it was just 17 Gy.  I had a sticker chart again to place stickers on after each treatment, it was such a huge difference this time, last time I had thirty two treatments so there were so many more to count down, five really seems like nothing.

That night I was in so much pain, it was terrible and brought me to tears, I have to admit I was a little frightened, this had not happened last time, but I had Mum there comforting me in every way she could. 

The next day when I had my radiotherapy we saw my Radiation Doctor, who has not changed, he is still so reassuring.  He always talks to me directly and really cares, I think when I first met him I referred to him as reminding me of a very friendly 'Santa Claus'.  He explained that the pain I experienced the first night can sometimes occur, so that made me feel more at ease. 

On that Tuesday Mum and I met with many other specialist teams who spoke about pain relief, both medicinal and alternative.  We talked about things that will assist me to make me feel more comfortable in my daily living.  Then the physiotherapist Judy came and spoke with us offering ideas and confirming that Kaitlyn is helping me in the best ways. 

Wednesday was filled with appointments yet again including my radiotherapy as well as seeing the Social Worker.  I was finding that I was feeling really tired, whether it was from the treatment which can make you tired or just from the having such busy days, filled with seeing so many specialists. 

On Thursday I saw my Oncologist, he was helpful in answering some of the questions I have had and gave Mum and I some advice in relation to school and sports.  He is going to see me again in May when he has his Clinic in Canberra.  I have been told that I do not need to see an Endocrinologist any more as because of my relapse and different needs.  Also the follow up schedule I had for my original Medulloblastoma is no longer relevant and all the tests they do are to look for new tumours, which they have found now, so things change.

As the week went on I was finding that my pain was not as intense, which is what the purpose of the treatment has been.  Although I still have constant pain which I often describe to be like my tinnitus, it is always there and I guess when something is there all the time you become so used to it.  I have also been prescribed stronger pain medication for the times when I need it, what a pity I did not have it on that Monday when I was in such terrible pain. 

At the end of my radiotherapy on Friday I was able to ring the bell, I did that last time but I think I rang it with much more excitement and for longer last time because my treatment had gone for so long.  In a way I felt rather silly ringing it for just five treatments, but I was still pleased it was all over for the week because that meant that I would be going back home. 

My week was not all appointments I found a little spare time to catch up with some special friends, mostly in the evening for dinner.  I got to see Tess, my Starlight Wish Granter, she always makes me smile and then I also saw Gavin and Paul who were instrumental in making my book a reality when it almost seemed impossible.  Another highlight was meeting Christine who is a fellow author and behind the website Australian Inspiration.  All these people are a very important part of my journey and I feel so blessed to know them all

We experienced the most terrible weather on Thursday in Sydney, it absolutely poured for most of the day.  It was miserable and going to and from appointments even an umbrella did nothing to protect us from the harsh conditions.  However in the late afternoon the winds blew the cloud away and the sun peeped through.

Our flight home was slightly delayed but not as long as when we left Canberra.  The weather was fine and as we flew into Canberra last night, seeing the entire city lit up was really very magical.  The best part of all though was seeing Dad, Nalani and Jarrett and being able to give them huge hugs. 

My new journey will now be monitored closely by my doctors in Canberra, I know that I will have good and bad days but what is most important is to remain positive and always make the most of each and every day.

Last week my valiant Tigers won their game in stunning style and I was so excited when Benji kicked the field goal to win.  Unfortunately they did not do so well this week against Manly, however Mum was very excited because she is a Manly supporter. 

Thank you for your wonderful messages in the last Blog entry, I am just an ordinary girl who is facing a difficult journey, I hope that through my journey I can help as many others as possible.

WET, WET, WET

25th February to 2nd March 2012

I don't think I have ever seen so much rain, we have had an absolute deluge of rain pouring down constantly for the past few days. The ground is so soggy and muddy and everything smells damp and musty.

Fortunately, the weekend was fine and I was lucky enough to go with my family to The Royal Canberra Show. At the show I looked around the many exhibitions, went for a ride on the ferris wheel, got to pat a cat called a sphynx, had a go on the clowns and won a huge pink bear on the lucky envelopes. I had a splendiferous time at the show with my family!

At school in Sports Science we have been learning about nutrition and the importance of a balanced diet, we went to the computer lab and researched websites with information on nutrition, I thought the AIS site was the most informative. In Maths we have been investigating Binomial products, there are many rules to remember in this.

I had physio this week and Kaitlyn worked on my back and my neck as well as my hamstrings and calves. Having physio always gives me relief from my aches and pains and tightness, I find that having heat on my back is extremely beneficial after treatment.

Sometimes on a journey a hurdle pops up in your path, I have had a huge hurdle come into my life. The results from my MRI's came back, my brain one showed that everything was still stable however my spine one showed spots on my spine and with further investigation I have been diagnosed with a relapse of my disease in my spine.

On Tuesday I was in Sydney for a planning day for some radiation, it is going to be very different from my original radiation, I do not have to wear a mask or lie on a bean bag. I will be lying on my back for this treatment and it will only take ten minutes rather than over an hour like my prior treatment. It is also a much lower dose, it will assist with my pain and help to slow the tumours. I will begin my treatment on Monday next week and it will only go for five days, last time I had it for six and a half weeks. I am not worried about it at all, in fact radiation was no problem for me, it was the delayed side effects that are not so pleasant.

I am very good at jumping over all the hurdles that have been put in my path so far and I am positive that I can jump over this one too. I wish you all a splendiferous week and hope that the sun will shine and a rainbow appear in the sky whilst I am having my treatment.