Friday, January 27, 2012


20th to 27th January 2012

Happy Australia Day to everyone.  Did you know that from the earliest white settlement at the end of the 18th century, Australians have striven to celebrate a national day, and in so doing, define what it means to be Australian. January 26 has traditionally marked the landing of Captain Arthur Phillip at Port Jackson in present-day Sydney, thereby claiming Australia for the British Empire. Early settlers, perhaps naturally, marked the anniversary. Australia Day has evolved from a small commemorative New South Wales holiday into a major national celebration.   It is a day that expresses the Nations diversity which has become such an important part of the Australian national character. Australia Day today celebrates diversity and tolerance in Australian society.  Australia Day has become a community day, there are still all the formal ceremonies throughout the Country like flag raising, citizenship ceremonies and the presentation of important community awards like the Australian and Young Australian of the year but now January 26th has become much more for the average Australian because celebrations have a strong festive aspect and encourage families to celebrate together with other members of the community.

To be an Australian means that we have a strong sense of  giving others a 'fair go', we are adventurous, we will all pitch in and help others in times of need, mateship and we have a good sense of humour. We live in a beautiful environment with wide open spaces, pristine waters and crystal clear blue skies.  We also have freedom in our Country to choose our own Governments, make our own choices and for everyone to be educated.  The achievements of those Australians who we honour on Australia Day should always inspire us and demonstrate that anything is possible.  How lucky and proud we should all be to be Australians.  Unfortunately  I did not go to any of the festivities as there were  too many crowds and too much noise  which are difficult for me but I thought about how important the day was and how as a proud Australian I hope that I can continue to show courage, wisdom and hope to inspire others.

I had my MRI on my brain this week, the night before I had a restless night sleep as even though I have experienced so many MRI's throughout my journey I get a little nervous as to the outcome everytime I have one.  This one was different too because I have been having all those dreadful headaches after commencing my growth hormone, Genotrophin, injections.  It was an early start that morning so it did not give me too much time to contemplate much.  We waited for quite a while and then were told that there were some technical difficulties with the machinery but it would not be too much longer.  The clock seemed to be going backwards as I sat waiting for my scan, but finally I was taken in. 

Having just a scan of the brain is much shorter than having the brain and spine done which last time took approximately and hour and a half.  I was all set up for the scan with the ear plugs going in last and then it began.  I think I now know every single scan noise pattern off by heart.  Just over half way through the scan the doctor came in and inserted a butterfly to inject the contrast through, however my veins decided not to co-operate.  She had two attempts in the inner side of my elbow with no success, then she tried the top of my hand, the first attempt was no good, however the second one went in beautifully.  The whole time she was attempting to insert the butterfly I remained calm, there is no use in getting tense of upset it would make it more difficult than it already was.  The contrast went in which is called, gadolin.  These MRI contrast agents are a group of contrast media used to improve the visibility of internal body structures in magnetic resonance imaging (MRI). The most commonly used compounds for contrast enhancement are gadolinium-based. MRI contrast agents alter the relaxation times of tissues and body cavities where they are present. Depending on the image weighting, this can give a higher or lower signal.  It is quite a sticky liquid and I could feel it going up my arm as it was injected.  Following the injection it was time for more scans, as always I had Theodore and Mum with me.

Then after forty five minutes it was over, time to take out the earplugs which actually begin to make your ears itch as they are made of a foam type of material.  You do not get the results immediately, the scans have to be looked at by doctors and then compared with other scans and as I have had so many they compare them with a few.  The doctors here in Canberra then have to talk to the doctors in Sydney for their opinion also so hopefully I will have some results next week.  I do have an MRI on my spine on 1st of February so they may also wait until those ones are done until we are told the final results. 

I have still been experiencing some headaches, some are only minor and dissapear quite quickly with pain killers but I have still had some that are just dreadful because they start at my temples and go around to the back of my head and they just thump, they make me feel so nauseous and tired.  Eventually the pain killers assist but it takes a while. 

This week was also physiotherapy for me again, which is always terrific, I have physiotherapy every fortnight because my muscles tighten easily and also because my foot is still healing after injuring it.  Kaitlyn worked on my foot and found that it was extremely tight underneath, which she massaged and released, then she worked on the top which is still painful in certain positions so it is not fully healed as yet.  She had to work on my calves as they were tight also and then she worked on my upper back.  My right side always seems to pull up higher than my left and so she tried a neck release to try to help it.  She wants to see me again next week to see if it helped any.  It was actually quite tender afterwards and now seems to have gone back to been pulled up. 

I had my hair trimed at the hairdressers, I also had one of my wigs trimmed because it was too long in the fringe, everyone always likes my wigs and some people even think it is my real hair.  The wig I had trimmed is a heat friendly one so it can be straightened or curled, again it is one that I bought from PlaywithHair, their website is .

Our weather has been pleasant, not too hot and at night a gentle cooling breeze comes up and whispers through the blinds.  The poor people in Western Australia where it has been continually hot and those in Queensland and New South Wales who have been inundated with rain causing floods.

Next week I have many appointments, a meeting with school, physiotherapy, my spine MRI and the dietitian.  Something special next week is ACT Junior Championships, I am hoping my foot will be healed enough for me to throw shot put.

'Remember that life is full of many surprises, but you've got to get into it to get something out of it'

Friday, January 20, 2012


14th to 20th January 2012

With the Summer radiant sun shinning ever so brightly in the sky outside this week, I received the news that I have an earlier date for my MRI on my brain, it is now on Tuesday 24th of January, it is very early in the morning at 8.15am, so I will have to be up and about at the crack of dawn.  My Endocrinologist kept pushing for the date to be brought forward as he is very concerned by the headaches I have been having since beginning my Genotrophin, the growth hormone.  Since been off them, my headaches are not constant but I am still experiencing some and many of them are not very pleasant.  At times I have felt like I am being stabbed in my head and it makes me cry, but at least they are not constant now, so that is a positive.  My spine MRI has now been moved to 1st of February when my brain one orginally was and I now don't have to have one on my Birthday.

This week I have taken it easy and spent time resting and enjoying the school holidays with my family.  We have been playing board games and watching some movies that we got for Christmas.  With the weather being quite hot again doing those type of activities are probably the best to do.  Nalani, Jarrett, Mum and I did go and have a game of French Cricket the other day, we had a splendiferous time, it is something that is not too difficult for me to do.  As my foot is still painful to put weight on, I played from my wheelchair, I could not do any diving catches like Jarrett but I did take a few catches, as well as getting to bowl and bat. 

Yesterday was a very special celebration for Nalani, it was her 18th Birthday, she is a wonderful sister and I was so excited to be celebrating such a wonderful occassion with her.  She did not want a big party, she just wanted to do something special with us, so we took her out to dinner along with Uncle James and Aunty Kate to a place called Bella Vista.  The food was scrumptious and they made her a special cake, it was a croquembouche or croque-en-bouche, this is a French pastry the name is a French one and it means 'crunch in the mouth', it was invented by Antonin CarĂªme and they made it on MasterChef one year.  It is a high cone assembled of choux pastry filled with a custard cream it was bound with caramel and decorated with threads of caramel.  They brought it out with a sparkler alight at the top of it, it was incredible and the best part was that it tasted as good as it looked.  The pastry was so soft and light and the creamy custard filled made your tastebuds tingle with delight, then you got a crunch of the sweet caramel.  

Jarrett is back at running training again, he is so pleased that his injury has now finally healed properly, he was so frustrated when he was not able to do his full training schedule.  Now he can build back up ready to compete at the ACT Junior Championships and the Australian Youth Championships which he has already made qualifying times for. 

I have found a bike that someone with a disability, who has balance problems or is elderly can ride, you see something that I used to love to do and missed so dreadfully following my diagnosis was riding a bike.  You can get a tricycle, one of the brands is a Gomier tricycle, these tricycles have a low step-through height which makes it easy to mount and dismount.  They have an adjustable head stem which gives you a more upright riding position and this also lowers strain on your lower back.  The seat has extra padding is is wider than a normal bike seat so this cushions your ride.  It has a strong, durable steel frame, lightweight aluminium rims, it has six speed shimono gears and non slip pedals which help grip.  It has a large basket on the back so you can carry things in it even some shopping and it has great stability so this is what makes it so ideal for people with a disabilty or even elderly people who may be unsure of riding a normal push bike.  I am so excited that have discovered this and can share it with you because it means that there is a way to ride a bike, when you may think you can't. 

They say laughter is the best medicine so I must share a funny story with you now,  when we were at running training the other day, I was sitting under a tree enjoying the fresh air when I felt something hit my head, it actually hit quite hard and hurt a little, I thought it must have been a little nut but I could not locate one anywhere on the ground near me.  Suddenly Mum gasped and told me that a bird had left a little message on my head scarf.  I took my scarf off in horror, then wondered how it could have felt so hard and hurt.  Then I began laughing, what an unusual thing to happen, Mum told me it is actually lucky to have a bird do that. We then thought about it and we decided it was lucky because if I had of been wearing one of my wigs it would have been much more unpleasant and messier to clean up than on my head scarf!

Next week is a busy one for me, I have physiotherapy on Monday which I am so relieved about, my foot is still quite painful, I also have been experiencing terrible back pain, so hopefully Kaitlyn will be able to assist me.  Tuesday of course is now my MRI, which I must admit I am a little nervous about because of the headaches I have been having.  I also have to have a bone age scan done that day while I am at the hospital as my Endocrinologist ordered it to be.  On Wednesday I have a hair appointment, I don't have much hair to cut but it is always nice just to have what I do have trimmed a little, I am also getting the fringe on one of my wigs trimmed as it is a little long and pokes me in the eyes. It is actually quite fun having a wig trimmed as you get to wear it and it almost is like having real hair trimmed.   

I am still looking for some unique and creative ways of raising funds and awareness this year for brain tumours so please keep your ideas coming, I appreciate the ones that people have already given me.  Remember that brain tumours are now the number one cause of death from cancer in children, that is so devastating and that is why I want to raise more awareness and funds. 

Enjoy the splendiferous Summer weather and remember to make the most of every day, start it with a smile and open your heart to those in need.

Friday, January 13, 2012


7th to 13th January 2012

'There are times in our lives when life isn't all we want it to be but we should see each new morning as an opening door to a better day than the one before.'

After suffering from dreadful constant headaches that made my head feel like it was actually going to explode and feeling so ill last week, we were able to speak to my Endocrinologist this week about my headaches, pain and nausea since taking the growth hormone injections, Genotrophin.  He told me to stop taking them immediately, he was really concerned about me and he tried to organise an MRI of my brain as soon as possible, the earliest we can get is the 1st of February which was when I was scheduled for one anyway,  unless a cancellation comes up earlier or if I have to be rushed to hospital because the headaches become worse including blurring of vision, dizziness or vomiting.  You see a complication of taking growth hormones when you have a brain tumour is that it can cause an existing tumour to become aggressive or it can actually cause the return of tumours very quickly.  I am hoping that this is not the case, of course my residual inoperable tumour has enlarged slightly in the last MRI's but has remained stable so hopefully it will remain that way. 

I also have to have another bone age scan which will be done at the same time as the MRI on 1st of February and then I have to have another MRI which will be on my spine on the 8th of February which is not only my first day back at school for this year but also my Birthday!

I had physiotherapy also this week and although my x-ray did not show a fracture, the physiotherapist feels that it is extremely likely that it could be a stress fracture which would not show in an x-ray but would show in an MRI bone scan.   Also the actual x-ray that they did was not done standing and that would also show a fracture more clearly.   She would have put a boot on my foot to help it, however my foot is too small to fit one, so I have a tubular bandage on it at present to protect it.  It is so frustrating to have a foot injury yet again as it is painful to put pressure on so I have to keep off it as much as possible, it is also still swelling sometimes so having a shoe on hurts. My leg muscles are also rather tight so that is causing me some problems and they needed to be loosened off.  I have physiotherapy again in two weeks time and I am hoping that Kaitlyn will be able to help me to recover in time to throw in the Athletics ACT Junior Championships on 3rd of February.

Although my headaches have improved a little since been off the growth hormone, having felt so ill really knocked me around so we have not been doing that much this week.  I am relieved though that the pain in my hips and legs that was waking me during the night has virtually disappeared now, so I am sleeping much more soundly and that makes such a difference to how you feel the next day.

Yesterday we did go to Interclub, Nalani competed in the discus and shot put, I could not compete again because of my foot and Jarrett is not back to track running yet because of his foot injury from last year, the track, even though it is synthetic, it is quite firm so he does not want to risk re-injury.  There was a mile championship on, which Jarrett would have competed in if he was able to run on track.  It was a terrific race, because Martin Dent was running in it, he won the race in 4:24 he is a really terrific distance runner, he is hoping to make it into the Australian team at the Olympics. 

Today I got my new uniform for School, because I will be in Year 9 and that is Senior School, we have a different uniform.  It is a taupe, pleated skirt, white blouse with navy piping on the pocket and a navy tie, it looks really smart although the sizes are all ladies so it is a little large on me, I am quite a bit shorter and smaller than most girls my age. 

I am still trying to think of a new and unique fund raising idea for this year, if any of my wonderful followers have any splendiferous ideas, I would really love to hear them.  If we can raise more funds and awareness this year then we may get just one tiny step closer to finding a less devastating treatment or a cure for brain tumours.  Have a blessed week filled with many special rainbow moments.

Friday, January 6, 2012


1st to 6th January 2012

Happy New Year!
It is so hard to believe that another year has passed by and that it is now 2012, we have a Calendar at home and it has a little inspirational poem for New Year on it, it does not say who wrote it, I would like to share it with you all.

Happiness depends upon your outlook on life
Attitude is just as important as ability
Passion, find yours this year
Positive thoughts make everything easier
You are unique with special gifts, use them

New beginnings with a New Year
Enthusiasm, a true secret of success
Wishes, may they turn into goals

Years go by quickly, enjoy them
Energy, may you have lots of it
Appreciation of life, don't take it for granted
Relax take the time to relax this coming year.

Our 2012 started off with sweltering, humid, blistering heat, you could not do anything outdoors and if you don't have any cooling then the temperature inside the house is just as hot as outdoors.  It was good weather to read a book, watch a movie and drink lots of refreshing glasses of cold water with ice cubes in it. 

This week I have had quite a few appointments including physiotherapy, bone mineral density and an x-ray of my right foot.  At physiotherapy Kaitlyn had a look at my foot and decided that I should go for an x-ray to investigate whether I had a lisfranc fracture.  She also did a pelvis release to try to loosen up that area as I am all pulled up on my right side.  She gave me a new exercise to do which a Pilates one to strengthen my lower stomach muscles, you lie on the bed with your knees up and you flap your arms up an down on hundred times.   I have physiotherapy again next week to check on my foot which will be terrific, hopefully Kaitlyn can make it feel better.   I went for my x-ray which I am relieved to say shows that I do not have a fracture, so my injury this time appears to be a severe sprain.  I was also told that this x-ray showed that I had poor bone density and often people with this are not only prone to fracture but also to sprains. 

I had to have a bone mineral density test done, I have to have this because of the treatment that I have had, this test measures the absolute amount of bone it generally correlates with bone strength and its ability to bear weight.  Determining a person's Bone Mineral Density helps a doctor decide if a person is at increased risk for osteoporosis-related fracture. Dual energy X-ray absorptiometry, or DEXA, is the most common method to measure a patient's Bone Mineral Density. DEXA is relatively easy to perform, the scanner is a machine that produces two X-ray beams, each with different energy levels. One beam is high energy while the other is low energy. The amount of X-rays that pass through the bone is measured for each beam. This will vary depending on the thickness of the bone. Based on the difference between the two beams, the bone density can be measured. Scanning generally takes 10 to 20 minutes to complete and is painless. The patient needs to be able to lie still on the table during the testing. Bone density measurements are reported as a value in g/cm2 and as a T-score or Z-score, which describes your bone density measurement in relation to other people in a similar group – known as the ‘reference population’. The reference population for the T-score is young adults of the same sex as the patient, while the reference population for the Z-score is a group of the same age and sex as the person being tested. Osteoporosis is diagnosed if your Z-score is -2.5 or less. My last bone density test showed that I had osteopenia, osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis.  My results showed that my femoral next BMD was 0.4640g/cm2 and a Z-score of -3.77 and my lumbar spine had a BMD of 0.5768g/cm2 and a Z-score of -3.10.  I have to wait for my results to be reviewed by Sydney before I know exactly what is happening with my bone density. 

My growth hormone injections which are Genotrophin mini quick unfortunately are causing me lots of grief.  I have been experiencing terrible pain in my legs throughout the night and it wakes me, so my sleep is disturbed as I have my injection at bedtime.  I have also been experiencing constant dreadful, throbbing headaches that start at my temples and go all the way around to the back on my skull, at times they are so horrible that they make me cry.  Also when I have the injection which ever leg I have it in (you have to use alternate legs) that leg becomes really heavy.  I have not noticed any growth as yet, apparently the first place people often start to grow is in their feet.  I was told that the side effects may not be pleasant and the doctor has been informed of the effects I am experiencing, he is away at present but I am hoping he will be able to do something to stop them. 

I was unable to compete at Interclub this week because of my foot which is still quite painful and I was told to rest it, I am hoping that I will be able to compete next week, if not I am sure it will be healed in time for me to compete at the ACT Junior Championships which are over two weeks the 3rd and 10th of February.  I did not feel alone not competing as Jarrett is still not able to run on the hard track surface just yet, although he is back at training again.  Nalani competed in javelin and shot put, she has gone up an age group so she has to throw a heavier weight implement, the javelin is now 600g and the shot put is 4kg.  So she threw personal bests because it was her first time throwing with the new weights. 

We have had a cool change come through and the weather is so much better than what it was earlier in the week, hopefully we will not have to experience those high temperatures again for a while. 

This weekend Nalani is doing her Road Ready Course, in the ACT this is how someone is able to obtain a learner drivers licence, they do that course for two days and also do a thrity five question test.  I am sure that Nalani will pass, she will then start learning to drive!

Wishing you all a splendiferous week, I hope that it is filled with much happiness and many rainbows.