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.


Anonymous said...

Dear Dainere
What a long walk, 3km. You certainly did deserve a rest after that. Well done. Gosh! school sounds so interesting these days, we would like to start all over again.

What a beautiful poem for a beautiful Mum. You are so right Mums everywhere are very special, and it is so lovely to hear your feelings about your Mum and your Dad too. You are lucky as you say, but they are lucky too, to have a daughter as special and caring as you.

All our love
Nan and Pop xxxxoooo

Anonymous said...

Dear Dainere,
Congratulations on your amazing achievement - 3 kms is a massive effort. You remind me of the Little Engine that Could. Do you remember that story - "I think I can, I think I can". It never ceases to amaze me what can be done when determination kicks in. I hope you got to have long rest afterwards.
There is certainly plenty to keep you busy at school at the moment.It sounds all very interesting and it must be hard for you when you have to miss some time there. Good luck for Monday - I'll be thinking lots of positve big vein thoughts for you:)
I loved your Mother's day poem. I'm about to head off to see my mum and thankyou her for all the wonderful things she still does for me and my family. I found a lovely jar of fig and ginger jam at the Hall Markets last weekend and I know she will love it - its her favourite and often hard to find. My girls and I are then going shopping and lunching -a perfect day. Ollie the cat gave me some extra good smooches this morning so maybe he knows it Mothers Day too.
Take care Dainere.

Ali Davies said...

Hi Dainere
Apologies I haven't popped into your blog for the last few weeks. My husband was involved in a serious car accident 4 weeks ago so I took some time out to care for him. Thankfully he is well on the mend now and things are returning to normal.

Looks like you have been doing great stuff since I was last here - 3km on the rollator? That is awesome. Good for you.

I remain in awe of the way your deal with your challenges Dainere.

Every time I drop by to read your blog I am blown away by your courage, resilience, dignity and incredible mindset.

Keep on keeping on my Australian rainbow

Ali x

Anonymous said...

Hi Dainere, first time i have logged into your blog... you are so brave.... I know exactly what you are going through, similar myself, but only just found out about you... a little older than you though... Hope you have good blood fairies next time you have to give blood.. thats what i call the nurses that take mine... :). Lots of love and stay happy... xoxxo Jess

SMSF said...

Thanks for the story.