Saturday, August 13, 2011


6th to 12th August 2011

Some people dwell on the negatives in their life, this only weighs them down, I like to look on the positive side, to see the light rather than the dark side.  By looking at everything in a positive way it can empower you to overcome the challenges that are thrown your way.

We had a dreadfully wet Saturday, with puddles rippling as the heavy rain drops fell into them.  We were at Stromlo for a Cross Country Race for Jarrett.  We found some shelter but Jarrett had to do his warm up and came back with soaking wet hair and clothes.  As it drew closer to the race, thicker, heavier clouds moved across the already dismal grey skies and then the rain poured down.  The race began, the course was not too slushy for the runners and they took off at a lightening speed, the pace remained fast with the front group taking a comfortable lead from the rest of the field, Jarrett was one of them.  It was a 3km and as the runners came round for their second of the 1.5km laps they were truly flying.  The rain did not ease at all during the race and neither did the pace, Jarrett finished fourth, he ran an amazing personal best time of 9:07 for 3km, his previous best for Cross Country was 9:35.  He was really pleased with his time and was even happier that despite the bleak weather conditions his asthma was well controlled.  I am always so proud of Jarrett when he runs, he is now tapering ready for National Cross Country which is on 20th August and I will be there cheering him on as loudly and proudly as possible.

Sunday after a walk around the AIS whilst Jarrett was training, Mum and I finished our packing ready to leave for Sydney. I had a long week of tests and appointments to face, it is always so very tiring and means that Mum and I have to spend time away from the others during that time as well as time off school.  The trip to Sydney is short, the longest part is having to arrive at the airport an hour before the flight.  We touched down in a sunny Sydney, we were the last to leave the aircraft because they have to get my wheelchair for me.  We headed to the lift so we could go and get our baggage, we waited and waited and waited for the lift with another lady with a pram, but it did not come.  So a Virgin Australia staff member found out the lift had broken down, the only other way down to the baggage area was down the step escalator, so Mum held me, one Virgin staff member took our hand luggage whilst another took my wheelchair down, we must have looked a sight.  Then they helped us get our baggage and escorted us all the way to a taxi, they kept apologising for the inconvenience.  It is interesting that at an airport when the lift breaks down there is not a better alternative.

Our week was filled with appointments and tests, unfortunately we did not have any time for pleasure, although we did manage to sneak in a walk along Coogee beach to watch the waves come crashing in, all white and frothy as they hit the sand.  I had a blood test, which was followed by my MRI, they decided to put the cannula into my left hand as my right arm vein had been used so much, however even though they thought it had gone into my vein, it had not because when they put a flush through it, it leaked out and my hand all puffed up from the fluid.  So they went for the right arm vein again, it went in easily with no problems at all.  I went into the MRI room, was all lined up properly, had ear plugs put in and all secured, Theodore once again came with me, he lay on my stomach throughout the whole time and of course Mum was there too as always.  During an MRI you have to lie extremely still, I have learnt to just drift off and relax, it can be difficult for some people and even some adults have to be put under anaesthetic when they have one.  Half way through the MRI they come in and put contrast into the cannula then they take more images.  This time my MRI went for longer, I had to lie still there for almost two hours, at the end when I sat up they told me I was a perfect patient and they were amazed that I could stay that still for so long.  I think part of my secret is that I have a good scratch and shake before I go in and I try to relax during the procedure.   

My next appointment was Oncology Clinic, you get weighed and measured and they ask you several questions about how everything is going.  Then they do some neurological tests, test reflexes and other general functions.  I was told some preliminary results from my MRI, it showed that I have a moderate diffuse enlargement of the ventricles and of the extra-axial CSF spaces, these have remained stable from the last MRI, there is post surgical enlargement and distortion of the fourth ventricle and gliosis surrounding the posterior fossa and there is diffuse high signal on my vertebrae from radiotherapy.  The residual tumour has thickened from the last MRI but is still stable at present and in a new finding there is an amount of fluid leaking into pelvis. When the final report comes through further investigations need to be done but they will be able to done in Canberra.  

I had to have another lumbar puncture which means a day in Hospital, before a lumbar puncture you have to fast because for children it is done under a general anaesthetic.  It was a busy day on the ward and I had to wait much longer than usual for my lumbar puncture. While I was waiting I did some work on my latch hook craft, everyone on the ward was fascinated by it and thought it looks like lots of fun to make and also looks terrific.  It was after five before I was taken in to theatre for the lumbar puncture, it turned out that I was last on the list for that day.  As the anesthetist put the mask over my face, he asked me to tell him a joke, I could not think of any then he asked me to sing a song by my favourite band, so I started singing 'Princess' by Short Stack but ended up giggling from the gas they use in the mask.  The next thing I knew it was all over and I was in recovery.  I was taken back to the ward and there was Mum waiting there for me with an apple juice and two delicious looking cupcakes.  I was so hungry as I had been fasting for so long, we had to wait until six thirty before we could leave the hospital as they have to make sure all your observations are fine before they let you go.  It was such a long and tiring day and the next day I had my neuropsychological testing.

The neuropsychological test is an intense one that is extremely fatiguing.  Firstly we had to fill in some paperwork and answer questions then the neuropsychologist talked to Mum and I.  I have to do these tests because the high doses of radiotherapy that I had can cause neuropsychological difficulties.  I already notice these when I am at school in the areas of processing, memory and concentration.  Firstly in the test I had to write my name and draw a picture, then I did some pattern matching, working out what was missing from a picture and each time it became more difficult, I was given a word and I had to chose a word that had a similar meaning, then the neuropsychologist read out numbers and I had to try to remember them and repeat them and the last test in this section was following given numbers and letters.  I was then given a break to have a drink and go to the toilet, I was so tired I just wanted to go and have a sleep.  There was still more testing to do though, so a twenty minute break was all I got.  On returning I had to make a pattern with blocks that matched a picture I was shown, then I had to copy drawings and then do them by memory, I could feel my eyes flickering like crazy, my nystagmus does that when I am tired.  More memory testing was next as she read a list of words and I had to repeat them from memory at the end of the list, the lists became more difficult and it was just too hard for me.  We went back to drawings again and then more word lists.  I was given another break for twenty minutes again for food and drink.  I was then on the final lot of tests, I was given a letter and had to come up with words, I was given certain topics for the words that I had to come up with.  Because I had had the lumbar puncture the day before and anaesthetic stays in your system for forty eight hours afterwards the neuropsychologist could see that I just could not do anymore so decided to stop the testing.  She is going to write a report and send it to us within the next few weeks, she did say though that she could see that I had difficulties with concentration and memory.  It had been a long, long day the testing had gone for almost five hours.  When we went back to the hotel I had a lovely relaxing bath and nearly fell asleep in the bath, after I was dried I lay down on the soft bed and did fall asleep, I did not wake up until dinner time. 

I was supposed to see the neurologist but they were unwell so that appointment was cancelled which was a relief because my body and mind were exhausted from so many really hectic and demanding days.  I was able to have dinner with Tess, who was my Starlight wish granter, it was so wonderful to see her and catch up on all her news, she is a special person in my life.

It was raining in Sydney yesterday and exceptionally windy, it actually reminded me more of Canberra.  The hotel staff told us that the week before they had temperatures of twenty four degrees and dolphins had been frolicking in the ocean.  Yesterday there were sirens on the beach, they were shark alerts, no one was in the water at the time, it was too wet and cold. 

I always think that there is no place like home and being away from home makes you appreciate it even more.  I will find out more results throughout the coming weeks, I will also find out what extra tests and procedures I have to have.  As I said in the beginning of this Blog I try to always be positive and even though my preliminary MRI result has shown increased enlargement of the residual tumour and fluid leaking into my pelvis the word stable is always comforting to me.

It was stupendous to read in last weeks comments that Ruby, who I met in hospital last year decided to raise money for the Sydney Children's Hospital Foundation Brain Tumour Fund after reading my story, if every young person in Australia was as thoughtful as her imagine what a difference we could make.  I continue to save all those five cent pieces ready to make a large donation at Christmas time.  I also believe that Dr Teo is now going to focus much of the funds that Cure 4 Life raise to help his research to find a cure for brain tumours, he is such a compassionate and caring doctor, I hope that the money he raises will help him find a cure. 

How about my West Tigers, they are splendiferous, five wins in a row and against some of the top teams, I have a feeling that they may pull off a miracle and take out this years premiership that would be a definite rainbow moment for me.

Next weekend I will be cheering Jarrett on at Cross Country Nationals and also praying that he does not have any breathing difficulties, he trains so assiduously and always shows such courage and good sportsmanship, I think he is an inspiration.

Take care everyone and remember to find the positives in your lives because it will make a comprehensive difference to your day.


Anonymous said...

"Last time I walked without nothing to lose in my life. Now, I don't want to give up to moving forward with something precious dreams to keep in my heart. That's what I called Hope". That quote is what I've learned from your journey. So please to not give up and I really hope you will find what you have dreamed in your life. ^^

Anonymous said...

Dear Dear Dainere,oh yes Dainere , The Glass is always half full , never half empty ok , you are so right .

Umm what a start bto your week with the lift not working, ah well , at least Virgin staff gave you a hand which was nice .

A PB and 4th for Jarrett , fantastic , well done Jarrett, and how proud you would have been Dainere .

Oh yes dont you just hate it when your arm puffs up , because the cannulae was not in right !! Oh wow , 2 hours on the MRI bed , thats terrible , they are so hard those beds and so uncomfortable , hope mine is not 2 hours Dainere , i will never be able to do 2 hours !!

Glad to hear that further tests can be done in Canberra . Just your luck being last on the list , thats what always happens to me Dainere , i think that nearly every procedure i have had done i have been last , and then straving and i get cranky when my tummy wants food .

oh you had so much to contend with , you absolutely amaze me , you have more in a week than most peole do in a life time , you are just so special . God Bless you , and so glad you managed to meet up with Tess .

yes, east west homes best , a saying from a Russian TV reporter that spent a lot of time in the USA , when asked what his preference was to living , either usa or russia , that was his answer .

Good luck to Jarrett in the cross country nationals next week .

LOve , hugs and best wishes

Stuart and meryl xxxxxxxx

Anonymous said...


I have just caught up with your blog after not reading for a little while, although you are often in my thoughts.

I was lucky enough to see Mary Poppins in Sydney and I thought of you a few times throughout the show. I think it was the positivity of the story as well as the stars they had (using lots of little lights) as well as a rainbow at one point. You are such a positive girl and inspirational to many many people.

Thankyou for continiung to share your journey with us all, I know you help others in lots of different ways.

Keep smiling through these wet days :)

xxxxxx Monica