Friday, May 27, 2011


21st to 27th May 2011

'When thick clouds cross my path, there is a light that shines on me that guides me through to brighter days'

My weekend was a hectic one completing the many assignments that we have been given for school.  I had a break though to watch Jarrett run in the Half Marathon Eve 5km Fun Run and Junior Point Score, it was a huge field of runners of all ages and abilities.  The weather conditions were favourable however as the race progressed the winds began to increase.  Jarrett ran perfectly, being one of the lead runners in the event, as the race went on one runner had taken the lead with Jarrett a clear second place.  We waited at the finish line to see Jarrett run a magnificent race, coming second overall but he was the first Junior across the line.  He ran an excellent time of 16:26:00 which was terrific on that particular course.  He received a trophy which he let me hold, he still always says he runs every race for me.  He also received maximum points for the point score, he has now received the maximum points in all three races he has run in so far this season. 

Sunday, inspired by Jarrett's race I was determined to do my 3km walk again with my rollator around the perimeter of the AIS without stopping.  I made it over the toughest hill, red faced and slightly puffing and went on, I had not stopped but suddenly that all changed, the path was slightly uneven and I kicked into my rollator wheel with my left foot and then went for a tremendous stumble onto my right side.  Immediately I had pain in my ankle, knee and heel. I continued to the end but was in excruciating pain, I felt that I had done something serious.  At home, I rested it, tried to ice it but it stung like crazy and was unbearable and I elevated it.  The pain continued for the rest of the day and into the week, often the pain becoming more severe.  

So I spent this week having it investigated, I am afraid to say that I have a stress fracture again in exactly the same location that it occurred last time.  There is nothing much I can do for it other than stay off it and do the little exercises Rhiannon my physiotherapist has given me to do and wait for it to heal.  I am so disappointed as I had felt I was making progress and would perhaps be able to do the Athletics ACT Cross Country but now there is no hope of that. 

At school I have had to endure the pain from my heal and try to concentrate on the work, that is not an easy task but you have to just grin and bear it.  Pain also makes me feel nauseous and totally exhausted so I felt rather miserable sitting in class.  

In Maths we are still completing tasks related to Pythagoras theorem, in English we listened to Barack Obama's speech when he was named President Elect of the United States, in Science we have moved on from Forces and Newton's Laws to Energy and in Christian Living we are working on our Moral Tale.

On Thursday I had to present my speech in English, my speech was on bullying, I think I presented it well, from the class speeches the teacher's decide who will go on to do their speeches at a special Middle School Public Speaking Night.  

In Footy Tipping I am still winning with 49 points, Nana and Pop are now both on 44, I am hoping to increase my lead this weekend.  There could be some interesting results because so many players had a tough game in the State of Origin, which by the way I was going for Queensland. 

Nalani did PE for the first time in ages this week, she was so excited to be able to participate, she is hoping to do further study in the area of sports massage, sport management or sport science when she finishes Year 12 this year. 

Next week I have to go into hospital on Wednesday for more tests, I will let you know all about them in next week's Blog. 

I have started a new fund raising project for the Brain Tumour Fund, I am collecting five cent pieces in a container from change we get when we go to the shops and sometimes ones that one of us finds on the ground, many people seem to drop them as if they are worth nothing but each five cent piece could add up to a large amount to help funds like the Brain Tumour one  I hope to fill  my container fully before the end of the year.

I love all the wonderful comments you leave me and treasure the encouraging and helpful suggestions you make, thank you.

Friday, May 20, 2011


14th to 20th May 2011

It took a long time for me to recover from the effects of my glycogon test and even on the weekend I was still not back to feeling 100%.  However I don't think on any day I feel 100%, some days for me are better than others, on my good days I try to make the most of my strength and health.  Jarrett had running training at Stromlo, it is a purpose built Cross Country Course designed by Robert de Castella, it normally has a lush green cover of grass but with the cold weather it tends to go a grey colour because of the type of grass.  I wanted to walk some of the course so I asked Mum and Dad if they could walk beside me, holding onto my arms and balancing me,  I guess you could say they acted like crutches for me.  I wanted to walk the 1km loop, I knew that was far enough considering how ill I had been during the week.  It took me the hour session that Jarrett had but I did it.  The ground felt so strange under my feet, extremely uneven, it was almost like walking on lots of cushions at different intervals and on a few occasions I did off balance but had the support of my crutches - Mum and Dad.  My calves were rather painful after the walk and continued to be painful and stiff as well as having pain and weakness behind my right knee so on Sunday my walk with my rollator around the AIS was also much shorter than usual. 

It was back to school on Monday for a hectic week learning new topics as well as an endless number of assessments.  In Maths we are learning Pythagoras's theorem, I love it, it is so easy, in Integrated Studies we are looking at modelled problems, in Science our topic is The Law of Physics so we looked at Newton's laws, in English we were inspired by listening to and watching Martin Luther Kings I have a Dream speech, for Art I continued working on my emotion sculpture and in Information Technology I did more work on my power point presentation. 

Our nights have been arctic with thick, heavy frosts with subzero temperatures, yet the days have been pleasant when the sun shines melting away the ice, leaving it glistening like diamonds on the grass and plants.  I have an electric blanket on my bed and I just adore the warmth that I am instantly greeted with as I climb under the covers each night.  I have noticed that with the colder temperatures at night, my bones have begun to ache and I sometimes wake during the night with a chilly head, my head is still lacking a luxurious cover of hair, so those bald patches get cold easily.

I had a lung function test this week, when I was in Sydney I used to have to have three different tests but I only had to do one of them this time.  I knew the drill, the person doing the test did not even have to explain to me how to do it, I guess you do become an expert when you have to undergo a test frequently.  The result was okay,  my lung function is on the lowest side of normal which it was during chemotherapy, so that is stable.  I may have to use a puffer regularly just to assist my lungs a bit more and especially if I become ill with a cold.

My week ended with my Endocrinology appointment, waiting in the hospital I was feeling anxious about my results.  I reflected on the fact that when I had radiation I thought it was easy compared to chemotherapy which had made me so dreadfully ill.  I even remember asking for more radiation instead of chemotherapy but radiation has more unpleasant long term side effects.  I was about to find out just how many when I received my results from my tests.  They showed that I have multiple hormone deficiencies, cortisol issues, a growth hormone deficiency as well as an unexpected and generally rare effect which only 5% of patients get and that is radiation caused high cholesterol because of the results I now have to have more tests, in fact three quite invasive tests in one day.  These tests are going to be done on 1st June, from those results treatment options will be looked at and perhaps even more tests.  The doctor is going to apply for growth hormone replacement therapy which has to all be approved and can take some time.  The hormone replacement would take the form of an injection which Mum would have to give me on a daily basis.  He again reminded me that my spine will not grow at all because of the radiation, only my legs will grow with this treatment.  I have also been told that my face will outgrow my head which will not grow any further either, if you have a decent amount of hair that can hide it a little, however with my hair been so scarce, it will be better for me to wear wigs to help this.  On a positive note, my thyroid results were not as severe as he expected, however he has warned me that he expects this to change within the next few months.  Having a positive was terrific as the news was quite difficult to hear. 

Life goes on and what I can take from today is that there is treatment, it may not be pleasant, it may also have numerous side effects but something can be done.  As always I make the most of every day and look forward to trying to do as much as I can into the future.

Jarrett is racing in a 5km Cross Country point score race tomorrow afternoon, Nalani is singing with the choir at the opening of a new library  and we all have homework to keep us busy this weekend.  Nalani's knee is mending well, she is now jogging on the spot and doing straight line jogging, some drills and is still working determinedly at the gym. 

I am still winning the footy tipping leading with 45, Nana is on 42 and poor Pop is trailing behind on 40.  Last week there were so many upsets, I am hoping that this week  is a little more predictable.

If I am ever feeling low,  I always remember that there is always someone out there who is worse off than I am, I look at my family who love me so very much and then realise what a lucky girl I am, all my clouds are whisked away and replaced by the sunshine of my smile. 

Saturday, May 14, 2011


7th to 13th May 2011

Dad's Birthday was on Saturday, we all spoilt him throughout the day including having a pizza dinner.  Jarrett ran in a 3.2km pointscore Cross Country event and as a special gift for Dad, he won the race easily, gaining maximum points.   I also had to have a blood test on Saturday because the one I had on Friday had clots in it.  They used my right arm vein which was still bruised from my MRI, the blood flowed smoothly and quickly.  Sunday of course was Mothers Day so that was Mum's day to be spoilt, she does so much for all of us so it is one day that we can do some little things to show her how much we appreciate her. For dinner I helped make vegetable slice and match sticks which you use puff pastry, cut it into rectangles, bake them, let them cool, put jam on them, pipe cream on top of the jam, put a lid on and sift icing sugar onto it, as a special touch we also drizzled melted chocolate on top also.  They are absolutely scrumptious and we all enjoyed eating them. 

Then the week began with me being in hospital, I had to have a glycogon stimulation test, we had to arrive at the hospital before 9am.  Once there I had to have a cannula put in, they decided to put it into the right arm vein as it is my best vein even though it was bruised from the test on Saturday.  They wrapped my arm in a heated blanket to try to make it a little more comfortable when they inserted the cannula and also to make the vein more prominent.  Once the cannula was in, I had to have blood taken, they seemed to be drawing the blood forever but eventually it was finished.  To help keep my arm straight they strapped my arm to a special board and then it was time for me to go to my hospital bed for the day.  Next they came to give me an injection in my thigh, because I am allergic to EMLA which is a special patch they often use for children to numb the spot where an injection is going to in, they gave me an ice pack to place on my thigh and said it would numb it and make the injection more pleasant.  No one has ever suggested this before and I found that it was terrific as my thigh was numb and I did not feel the injection go in.  So if you are allergic to EMLA there is something you can do to make an injection less painful.  An hour after the injection the nurses came to take blood and check my sugar levels, then every half hour after that they came and took more blood, this happened for three hours.  Each time they took two large vials of blood, altogether that day I had 18 huge vials of blood taken from me.  They also did two finger prick blood tests, I was feeling quite weak as I had had to fast from the night before and having so much blood taken.  Finally I was allowed to eat and drink something and was monitored, they decided that I was able to go home but I was told I could feel rather weak and nauseous over the next days.

They were right because when I arrived home I was so tired I slept, on waking I felt dreadfully nauseous, having some dry retching and terrible stomach pains.  Over the next few days the nausea continued and all I wanted to do was sleep most of the day.  I was unable to go to school or even attempt to do school work at home.  I also found that my walking went haywire, I could not balance properly and could only walk small distances before becoming overwhelmed with dizziness.  By the end of the week I was pleased that there had been improvement although I still remained weakened and tired. 

I had physiotherapy on Friday, from being in a hospital bed my neck and shoulders had become tight and stiff and my knee had also become tight and painful from walking and being off so dreadfully off balanced.  However Rhiannon my guardian angel of physiotherapy massaged my tight, sore areas and used heat to help me, after feeling so horrible all week having physiotherapy was definitely a highlight. 

The weather was also appalling this week, it was freezing cold, with arctic winds, sleet and heavy frosts, in a way I was glad to be indoors where the heating was lovely and warm, I could wrap myself in a cosy blanket and cuddle Theodore.

Next week I have more appointments, a lung function test and a visit to hospital to see the Endocrinologist who will hopefully be able to let me know my test results.  Last time we saw him he said that I would also have to have more tests that involved staying in hospital for a longer period of time, he was going to tell us about those when we see him.

I am still winning the footy tips, last week I got three out of the four games, so did Nana and Pop so our positions have remained the same.  This week could see some changes though and after the Friday night games I got one right and one wrong.

The trees that were covered in red and golden leaves last week are now almost virtually bare, Winter will be upon us very soon but those red and golden colours can remain with us throughout the cold days when we smile, care and help each other.  Wishing you all a splendiferous week ahead, rug up and be kind to everyone you meet.

Friday, May 6, 2011


30th April to 6th May 2011

My weekend was a quiet one in preparation for my return to school for Term 2 although there was one special achievement I would like to share with you and that was that using my rollator I walked approximately 3km, yes that is right 3km on the paths around the AIS on Saturday.  I did stop to have a rest at the half way point because there had been hills which made my face turn a bright red with the huge effort I had to make to conquer them.  It took me the hour of Jarrett's training to do it but I felt so very proud of myself.  As you can imagine I then spent the rest of the day resting and having my calves rubbed with some deep heat as they became extremely tight and sore following the walk, also my right knee swelled so I had to use some ice on that.

An overcast and extremely cold morning greeted us for the first day back at school on that morning my stomach was filled with nerves.  It began with a double maths lesson, we were given a Rich Task to complete over the first two weeks of Term, it is all about statistical analysis, I am excited about this task as it is something that interests me.  Having a double lesson really tires me so I spent recess resting so I would be able to continue on for the rest of the day.  In English we are finishing off our poetry unit and then starting on Speeches which is something else I really enjoy doing.  Then in Art we are doing a 3D sculpture using wire and paper mache it has to show an emotion and we can either do a head, hand or whole body to show it, once we have made it, we have to paint it with colours that express the emotion we have chosen.

Tuesday I had Integrated Studies, we did some History activities, in Science we worked on our discussion for our Science Report about the Effect of Salinity in Plants. For English we had a poetry evaluation on the poem Jaguar, it was a truly moving as well as heartbreaking because it ended in death.  In maths we continued working on our Rich Task which is where you have to do certain activities to earn stars, the aim is to earn as many stars as possible in the given amount of time.  Integrated Studies was the last lesson and we again worked on questions from a workbook about History. 

My Wednesday began with a double Science lesson, we are looking at Force this Term, we did some activities involving magnets, blowing through straws and static electricity.  Then in I.T we are working on creating our own Website, firstly we have to submit a plan as a power point presentation, I am doing mine on Cross Country Running for Students, I used to love my Cross Country Running and hope to eventually be able to run again one day.

Today at school I had English, I have to choose a topic to do a speech about in week 4 of this Term, there are so many to choose from or we can choose a topic that is approved by the teacher.  Maths was my next subject, we again worked on our Rich Task, I am now up to 24 stars the minimum we had to do was 18 so I am pleased to be past that as the more tasks you do, if you do them correctly the better grade you can achieve.  Then it was time for Christian Living, we have an interesting assessment task to do, we have to write a book which has a moral for the children in Early Childhood they are from pre-school to Year 2.  This is something I know that I am going to love doing, I already have many ideas about how I want to present it so that the children will love it and I may use Theodore to help.  I don't want to give too much away at the moment until my idea develops more.

You will notice that I did not mention school on Thursday, that is because I did not go because I had to go to Hospital for an appointment with an oncologist.  I have found out that I have to go to Sydney in August to have my MRI, Lumbar puncture, Neurologist appointment and Neuropsychological Test.  An MRI of my spine has to be done here in Canberra in the next couple of weeks and some more brain images to check for more enlargement of the 4th ventricle.  I was told that if I have any severe headaches or vomiting then I have to go straight to my paediatrician sometimes microscopic cancer cells can be there but it is not until a tumour forms that symptoms start to occur.  My reflexes and balance still continue to be worse on my right side than my left and my nystagmus is a continuing problem.  I have no immunity to any illnesses, usually after chemotherapy the immunity levels build back up but mine have not, so I have to have numerous blood tests to see if there is another underlying cause for this.  I am being admitted to hospital again on Monday for my glycogon stimulation testing and have been told that I will spend some more time in hospital for more tests that they need to do.  The oncologist even suggested having a central line put back in for the tests and medication that I may need to have to save my veins.  He also told us that the tumour in my pituitary was inoperable as it was too dangerous to remove, so that is why I had the highest possible doses of radiotherapy targeted at that tumour.  The radiotherapy doses and remaining tumour is what is causing me so many pituitary problems now.  Even though I sometimes feel like I have grown taller, whenever I am measured I have not grown at all, lack of growth is an issue that the doctors are concerned about and it is part of the pituitary function.  I always remain positive though and greet each new challenge I face with determination and courage, you can never give up when you have an illness.  Goood news was that he was so proud of my walking efforts and that made me smile.

Today I had to have a blood test, they did not want to use the vein in my right arm which is the best because it was still bruised from my last MRI.  So they used a vein in my left arm, unfortunately part way through it gave in, the lady thought there was enough blood, but we received a telephone call this afternoon to say that I have to go back tomorrow morning again to give more as one vial had clots in it so it could not be used. 

With having to go into hospital on Monday I am hoping that my veins are going to behave, I think that they will have to use the vein on my right arm as they have to insert a cannula on that day and a small vein is not going to work as I have to have blood taken out as well as the glycogon injected into through the cannula. 

In the footy tipping last week I estatic to inform you all that I got all eight league games correct, that has put me further in the lead, with only four games this week I am hoping for 100% again.  Nana and Pop have started to ask for a head start so they can catch up to me.

Tomorrow is Dad's Birthday and then Sunday is Mothers Day, both Mum and Dad are amazing people, they give me so much strength, love and encouragement I am so lucky to have such splendiferous parents and I love them very much.

I found a poem by Donna Fargo about a Mum that I would like to share with you all and I wish all the Mum's who follow my Blog a very Happy Mother's Day, I hope your day is filled with every happiness and that you are spoilt because like my Mum you deserve it.  I think that all Mum's are the most extraordinary people in the world.

' My Perfect Mum'

Your heart is big.
Your love is pure.
You want the best for me
and care about everything I'm going through.
You love me without condition.

If I could choose anyone at all for my Mum,
I'd choose you.
You are my perfect Mum
and I love you and appreciate you
more than I could ever express.