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. 


Anonymous said...

Hi Dainere

Can't help but feel terrible for you with the news received this week.I continue to pray and think of you often, it must be very difficult for you. But as always, chin up, big smiles, you are beautiful and the strongest and bravest person I know or sort of know!

School is busy for you which is a good distraction, does youor Mum still attend with you? I love assisting my students, they make me laugh, they always smile when they see me and I hope I make their day a little easier to manage.

I'm on 47 points in footy tipping, coming 6th out of 19 people. Have tipped Dogs tonight but Raiders are killing that tip.

Hopefully you will have a good week, you teach so many followers how to approach life with courage and diligence, you are a STAR!!

Lots of love, Fran xoxox

Anonymous said...

HI Dear Dainere, Yes i can relate to your comments , that you never feel 100% , and some days are better than others .

Well done walking some of the course desigend by Robert de Costella, thats awesome my friend , your determination is magic. Good on ya mum and dad.
Thanks for updating us on your school work it is so interesting to read , as for some of us oldies , ie stuart and meryl hihihi, to read that some of the stuff you are doing we did and then again some of the stuff you are doing weve never heard of hahaha.

oh yes your weather has been so cold for this time of the year my friend , and we are not in winter yet !!

Dainere, when meryl nd I went to Peru in 2009 , we bought , from some children , 2 beautifully warm , beenies of the Peruvian style , you know the ones with little ear covers and pony tail like strings hanging down to ties the thing under your chin if you want . ( children who need to supplement the fanmily income have to sell these things in order to make money to live on .

Well i never use mine , I would love to send it to you , I can buy another one for me when we go in November this year , so if you want it please just e mail me at home . They are so warm , meryl uses hers a lot . they are made from Lama wool which is incredibally warm and as you loose most of your body heat through your head , thats why your head is feeling cold at night , so please let me send this to you , youll love it .

So glad your lung function test is stable .

UMM , your endocrinology results , a few more things for you to navigate round .

Dainere , no matter what happens to your physical outside shell , , and your spine not growing , YOU WILL always be a model for patience and your attitude will not change , you have been blessed with a superb outlook to life and you can hold your head up high , you would come first every time in attitude competitions .

yes life does go on , and you are always striving to put one foot in front of the other.

Good luck to Jarrett in his race and also to Nalani with her concert.Well done in the footy tips

I like your comment about feeling down , my mum had a picture on the kitchen wall years ago, of a little girl , running down the street after a bomb had droped some chemicals , she was naked and it was a world stopping photo, my mum wrote under neath the photo , ""When you feel down , look up "" she meant look up at the photo of this poor little girl aged about 9 , that little girl is now a Peace Ambassador for the UN , YOu at your tender gae have displayed the same statement that there is always some one worse off than us .

Dainere we wish you a good week , Take care .

Lots of love
stuart and meryl

Anonymous said...

Hi Dainere,

You are a true inspiration to me. Despite all your trials you are able to think positively.

Good to hear that you are enjoying school - such interesting topics you are studying!

You are blessed to have your 'crutches'. Such wonderful parents.

I continue to pray for you each day.

God bless,

Elizabeth Rayfield

Anonymous said...

Hi Dainere,

Well done with your footy tips, you are better than me.

I am again saddened to hear of your results and how they give you more to endure. I think you have had every rare complication known and yet your spirit stays so strong.

I guess you will grow lovely long legs :)

I hope your hair grows a little more for you. I think that offer of that hat sounds wonderful.

You havent talked about your art for a little while, I was wondering how that is going are you still doing it?

Well done on your 1km walk with "parent crutches", how do you remain so positive and driven?

You are, as always in my thoughts and prayers.

xxxxx Monica