Friday, March 25, 2011


19th to 25th March 2011

We had a miserable weekend in Canberra with it raining both Saturday and Sunday so I was unable to do any practise using my rollator at either Stromlo or the AIS where Jarrett was training.  It was the perfect weekend to stay indoors doing homework, watching DVD's or going to the shops.

It was also this weekend that we received the news that Great Gran was becoming worse, more fluid was building on her lungs and they had to give her more oxygen to help her breathe.  My Nana and Pop had to organise to get there as quickly as possible so they could see her.  Great Gran is a very strong person though, perhaps I have inherited my strength genes from her, the doctors did not think she would survive the week, but here we are, it is Friday and she is still hanging in there although she is not very well at all.  It has been a terrible time for the family and we have been praying for her not to be suffering at all during this time.

This week on 23rd March it was exactly two years since I saw my paediatrician, was rushed to Canberra Hospital for an MRI  ,told I had tumours on my brain and rushed to Sydney that evening.  I was operated on the next day in a ten hour operation, told they could not remove all the tumour in my cerebellum and one they would not even attempt to remove because of its location at that stage I did not know whether the tumours were cancerous or not but as you know they were.  That was the day that my life and my families life changed forever, I look back now and know that I was given that journey for a reason, I am still fighting and in those two years I think I have been able to make a huge difference in many people's lives.  Hopefully I may have two more years to be able to continue to reach out helping others and inspire them.  I think that there is no hurdle, no matter how large that you can not jump if you have courage, determination and hope.

School has been very hectic this week, we have had numerous tests which have taken their toll on me, Monday we had a Maths test, there were three parts to it, the first part had four pages.  We had a double lesson to work on it, so that was ninety minutes, after ten minutes my eyes were flickering and I could not focus on the sums in front of me, my head began to throb and my right hand became stiff, painful and extremely weak.  I had a little break and had my hand massaged to try to help the muscles which had all spasmed, it was like my hand was crippled.  I closed my eyes to try to stop the flickering but every time I opened them and looked at the page in front of me they just seemed to flicker all the more frequently.  I tried my hardest but it was just too much.  I felt so strange, my head continued to throb, my eyes just would not stop flickering and my right arm became painful with shooting pains going from my fingers right up the length of my arm.  I was pleased when the lesson was over, although I had not even finished the first part of the test and was dreadfully disappointed because I love Maths but obviously that period of time concentrating is too much for me.  

Mum took me home after the test and in the car on the drive home I was crying because my arm was so painful, once at home, I had a seizure which was very frightening and left me with pain and no use in my right arm.  It remained painful and immobilised for the rest of the day and I also had a headache for that time period too.  When I went to bed, it was still very weak and I did not feel well, I was hoping to wake up with some improvement the next day.

To my relief, there was improvement when I woke, although I was still very weak in my right arm so at school I used my left hand to write, thank goodness I learnt to use my left hand after my surgery, it certainly comes in handy when I am faced with a situation that I am unable to use my right hand.  At school this week apart from the Maths test, we have been learning about cells in Science, continuing work on our novel Holes in English, planning our own website in I.T and began a science project about salinity using broad bean seeds and different concentrates of salt water.  On Thursday I had a Science test, it was also quite difficult although no where near as long as the Maths one, I did struggle and it exhausted me but I finished it. 

Each week I work on my physiotherapy exercises which Rhiannon gives me, although when I am ill or like on Monday when I had the seizure then I am unable to do them which to me is a real setback as far as I am concerned. I have to be patient though and take the good with the bad remaining positive and also not to be too hard on myself if I am unable to achieve some things, some days.

On the weekend Jarrett is racing his first Cross Country race for the season, it is a 2.1km Junior Point Score Race and then he is going to also do the 4.2km Senior Race.  For National Cross Country this year he has to run 6km, that seems like such a long distance to me.  Nalani has been working hard at the gym and is well on track to be able to participate fully in sport in the next three months.

I am doing footy tipping with my Nana and Pop again this year, the first week I did terribly only getting two right while both Nana and Pop got six, the second week I improved a little so I am hoping that this week will be my week to shine.  Luckily my West Tigers won last week and this week is a huge game against the Raiders.

Next week will be another busy one at school with more assessments happening, it is Week 8, this Term is a ten week term so we don't have many more weeks left.  Then on the weekend it is the Relay for Life at the AIS and then on the Sunday is a Woman's and Girls Fun Run and Walk which is helping to raise money for Ovarian Cancer our School is encouraging people to take part in both events, I am going to be doing the Relay for Life on the Saturday and then on Sunday Mum, Nalani and I are doing the fun run and walk, raising awareness about cancer is something that I am just so passionate about, of course these events are not specifically for brain tumours but I think it is just as important. 

'In life we can find hope almost anywhere, it may be shinning out from someone we know, it may be in nature in the form of a rainbow or even deep within our own heart, it is hope that keeps us smiling and living'


Anonymous said...

Hi Dainere
What a week you're having!
I'm praying for your Great Nan and the family, for Cate and for you. You have had some very significant events this week and you have managed to stay positive, relay the news to us and still come out with an inspiring quote.Only exceptional people can do that Dainere, let alone a 13 year old! I trust your cold improved, I sincerely hope that school work does not tire you out too much, remember to rest!!

The Autumn weather is my favourite season, cool in the morning, clear, sunny blue skies during the day and then fresh again in the evenings. But I don't think I could handle the coldness of Canberra during the winter time. Fingers crossed for a sunny weekend so you can use the rollator.

My physiotherapy is going okay, my disc will never heal but I seem to manage my pain more effectively now, always on anti inflammatories with only 1 or 2 painkillers a day which is an improvement. It was more painful tonight watching the Eels lose as I tipped them. Also tipped Broncos so I hope they at least win. as of last weekend, I was on 9 points. Go the Tigers!!

I wish you a healthy week with less painful episodes. Only a couple of weeks 'til the holidays, Yee Haa!! I have to attend school on Sunday for Open Day (for the new comers next year). It's for a few hours and the staff and current students are able to show the new comers what a wonderful school it is. I'm very lucky to have such a Blessed job, helping those with special needs.

It's late, I'm off to bed, Goodnight, sleep tight!
Love always, Fran xxoo

Anonymous said...

Hi Dainere, Some times those stay in door weekends are nice , but a shame you could not use the rollator outside.

Meryl and I continue to pray For Great Gran. and that she will not be in pain .

Oh my friend , your story is a mirror image of mine , and you know my story , mine too also due to its position was unable to be removed fully, I pray that you too as well as me will have time and technology on your side . A technique was developed to remove from the brain stem ,

5 years ago I bought 12 bottles of wine for a charity bash for Royal Prince Alfred Hospital , and I said to Meryl , that I would keep a bottle of these 12 reds untill i was able to retire from work , that one bottle is still waiting to be opened , and when the day comes it will be drank in recognition of John Segeleov and Barrie Scrivener who saved my life 3 times .

So dont you worry about things , just take a day at a time , yes it does change your life and that of your family , but look how strong it has made you and your family , you amaze me Dainere with your strength and determination.

SO So sorry to hear about your seizure , thank goodness mum was around for you .

Yes my friend patience is so important , i know wnat you are going through , and i was like you , .

Our best wishes to Jarret and also Nalani with her rehab to get her back to sports

Good luck withy the tipping comps

OH well done with the cancer awareness and ovarian cancer fun runs and walks , Dainere , Meryls mum had Ovarian cancer , and again at RPA they saved her too. Dainere A web site exists that provides free mamogrammes to ladies in the USA , all you have to do is click the icon and its is supprted by adverts and so far 51,000 ladies have had mamogrammes they did not have to pay for and so many lives have been saved just by this . i click it every night ,. as Ovarain cancer is so terrible , as it gives no warning .

Keep on shining our young friend , , you are like a a beacon that warns ships of terrible disasters.

Much love and best wishes

stuart and meryl

Anonymous said...

Dear Dainere
We thought you would like to know that when we were with Great Gran, a rainbow appeared in the sky on one of the days, and on that day she had a much brighter day. We think your wishes and prayers must have sent it her way.

She is a very strong lady, 91 years is a great age to reach and to survive like she has, so we feel strongly that you certainly have inherited her strength genes.

We would also like to thank your followers who are praying for her too.

You certainly have had a very strenuous week. You make sure you don't overdo it as we want you to keep well and strong.

We picked Chifley up this morning from the kennels and they absolutely love him. His limp has not appeared today and they said he only had one bad day.

All the family asked after you and wish you well.

Jarrett did do well didn't he and sounds like Nalani will be back at her sport in no time.

Pop isn't doing too well at the footy this week.

We hope you have a much more relaxed week next week.

Lots of love
Nan and Pop xxxxxxxxoooooooo

Anonymous said...

My nearly 12 year old daughter has just finished reading your book... Wow, what an inspiration you are! J has suffered with a few debilitating ailments over the last few years which have resulted in procedures done in Sydney, scary for us all, and has had to endure a cocktail of medication and their side effects trying to find the right one. When she is at her lowest I always say to her how lucky she is that her problems are not life threatening... She takes that on board but after reading your book she now knows exactly how lucky she is. She relates to your story probably because you live in the same city as us, you are of similar ages and she has had to undergo yucky things too and cancer has touched her life with her grandmother going through hell and back with breast cancer She now realizes that the yucky things she has been through are easy peasy compared to your journey.
You are an inspiration to all Daniere and you are the most amazingly
positive teenager I have ever come across, your story and your bravado and
your selflessness needs to encompass every child in Australia, you have the
ability to change thought patterns and lives. Your book needs to be part of
the school reading lists across the country!
Our thoughts and prayers are with you, onwards and upwards Daniere :)

Anonymous said...


What a busy time you have. The Maths test was very long dont feel bad about not finishing it, lots didnt and they didnt have all the problems with eyes etc that you have to cope with.

It is a very busy time in the term but soon will be school holidays and Easter. Do you like chocolate?

Two years since your first challenge, that is amazing and your fighting spirit has not waned at all, what an inspiration, how do you stay so positive? It is truly a gift.

I hope your great Nan doesnt suffer too much, life is definitely not fair. I think you are right you must get your strength from her, she must have amazing stories to tell at aged 91.

Hope you can get outside in the sunshine this week as we now seem to be having a few lovely sunny days.

Thanks for your blogs, they lift me up every time I read them :)

xxxxx Monica

Anonymous said...

What a great effort and contribution during the last two years. I hope you will have not just two more but many more years to bring hope and joy to others. Go Dainere!