Friday, February 4, 2011


29th January 2011 to 4th February 2011

As I am typing this Blog entry we are in the middle of a fierce storm following a hot and humid day, which we have had many of over the past week, a storm provides some relief from the heat that just takes your breath away and zaps you of your energy. 

The place to be during this heat wave if you don't have air conditioning is in shopping centres, we ventured out to DFO for some heat relief and to allow Nalani to do some walking in a shop that was not too busy.  When we left, the heat outside was like being in a desert without water.

Each day even in the heat I work extremely hard on my physiotherapy exercises, ride the exercise bike and do stretches, regaining muscle strength is important and will help me to be able to be more mobile, I can do shorter distances with my rollator but tire if I try to walk long distance, over uneven surfaces or up hills.  I would love to be able to not have to use my wheelchair by the end of the year, I think that will be one of my long term goals this year.  I still have balance issues and always will but there are some things in life that you have to learn to overcome and make the best of.

Tuesday I had to go to Sydney for a lumbar puncture and oncology clinic visit.  We left Canberra at 5.30am, and did not arrive in Sydney until just before 10.00am, there was so much traffic, I have never seen anything like it before.  Once in Sydney, I was admitted on the ward and saw the Oncology Registrar who gave me a thorough examination.  I still have right sided weakness which has remained the same, I have no lower limb reflexes in my right leg but that has also been around for a while now, it seemed to have occurred whilst having my chemotherapy, the nystagmus, which is flickering of the eyes is still present, my MRI results showed what the preliminary one did, remaining tumour, enhancement in the lumbar area and a moderate enlargement of the fourth ventricle.  I remain stable which is a really positive thing, because my type of brain tumour was an extremely aggressive one. 

The best news of all from Sydney is that I am now going to see doctors and specialists in Canberra, my paediatrician will be in charge and I know that I am now in the best hands I could be.  Being looked after in Canberra means that I had to withdraw from the study, I am a little disappointed that my results now are unable to help others but I know that there are so many more productive ways that I can help make a difference to other people's lives.  I do however have to return to Sydney for lumbar punctures and I will have to go in August again.  I guess I have learnt that if you are not happy with what is happening, it is perfectly okay to question, to make requests and to do what you have to to move forward.

Being able to see doctors at home will help me have just a little more normalcy in my life this year, meaning I won't have so much time away from school and family.  Having cancer does change your life, but it is what you do after the experience; being positive, acceptance of what you have been through and understanding that even though you may have changed physically you are the same person on the inside.  Each day I wake wanting to have the most splendiferous day I can, even if I do have challenges to face or pain I don't want to waste a minute of that day.

I had a special visit from Stuart while I was in hospital awaiting my lumbar puncture and that was very special and helped pass the time.  I had my lumbar puncture, when I went in to have my anaesthetic I was smiling when they put the mask on and I kept smiling, Mum said that they had to check to see if I was asleep because I was smiling.  I awoke smiling and felt comfortable, had some food and drink and an hour later I was able to leave. 

Travelling home from Sydney was so hot, it reached forty five degrees outside when we were on the M5 and so many cars were pulled over on the side of the road with their bonnets up, their engines must have overheated sitting in the heavy traffic.  It was such a long tiring day, it took so much out of me and it was hot when we arrived back home late at night.

The next day I awoke with a painful back, I discovered that I had two hole punctures in my back and they were both quite bruised, I have never felt so uncomfortable after a lumbar puncture.  I had to take panadol throughout the day to provide some relief. 

Thursday I went to running training with Jarrett and Nalani, while Jarrett was sweating it out training hard, Nalani, Mum and I went for a walk, Nalani is so pleased to be active again and said she even felt like breaking into a jog but is not allowed to yet.  I long for the day also when I am able to break into a jog around the oval and a longer term goal is to be able to do some training of my own. 

I had pain in my right arm and some tingling, when I returned home I felt strange, next thing I knew my right arm had dropped and was ever so painful, I also felt so sleepy and had a terrible headache.   A couple of hours later the heaviness in my arm disappeared but I felt weak and had pain.  This morning it improved and just felt extremely tight and a little weak.

Today was physiotherapy, working with Rhiannon is special, she encourages me and helps me to set little goals.  She worked on my foot, my legs, my arm and shoulders then I did a walk, it was three metres without the rollator, I did a sit to stand, walked around a step and then back to the seat.  The first time it took me thirty five seconds and the second time it took thirty seconds.  We are going to do that again after another few physiotherapy sessions and see how I am going.  I have to do some foot taps at home where I hold onto the bench and use a phone book, I have to see how many taps I can do with my right foot and then my left food in a minute.  My right foot will be less but I bet with practise it will improve and I will be able to do more the next time I have to do it.

The rain is teaming down outside, the thunder rumbling in the distance and jagged bolts of lightening flashing in the sky.  The rain is so refreshing and it is cooling down the house making life so much more bearable, my heart goes out though to the people of North Queensland, Cyclone Yasi has been so destructive yet Queensland people have such a strong spirit and will recover from this tragedy, they are so inspiring

Next week is a huge week, my 13th Birthday is on Tuesday and then Wednesday is the first day back at school.  'As each new day dawns I look inside my heart, I find the strength, spirit and courage to create the most beautiful sunrise from deep within to fill my entire day with joy.'


Anonymous said...

Well my dear friend , lovely to read your blog ,and it was just great to see you on Tuesday, i had the best day , being with you , mum, dad and Jarret. thank you.
Oh isnt it so hot , Meryl said to me earlier "i wonder how Dainere is going with this heat , ", as she knows I cant stand it any more. , or at least my head can not.
Yes my dear its always right to question any medical proffessional about what is happening to YOUR body , never be afraid to ask questions in any aspect of your life .

WE sincerely hope the pain form the Lumbar puncture has now worn off .

Rhiannon will Im sure help you meet your goal, and dont forget , you and I have a date much later on this year , we will walk the track together .

Yes Yasi was so destructive Dainere it is so sad to see the people so distraught after what they have gone through , life can be so very hard.

Your way with words is fantastic young lady , you are such a fantastic writer.

Just a bit of local news to keep you up to date .

My mum and dad arriived in Sydney , they got put up in a hotel till they could fly on to Cairns , so all is well in that field

I will be spending some time talking to our friend in Lima tomorrow .

we had intended to meet up with friends at Bronte beach today but it was so hot Meryl and I decided not to go , but the others went , .

Ah well thats life

Meryl is so happy for you now being seen by Canberra doctors , and you now that I am .

well my dear friend have a great week and we will be in touch .

Lots of love and hugs stuart and meryl xxxxxxxxx

Ali Davies said...

Hi Dainere
Sorry I haven't popped in for a while. Hadn't forgotten you - my business was hugely busy after a 3 week break at Christmas plus we were making some changes to the website and technical stuff always challenges me as it isn't my strongest point. So it has been a pretty hectic few weeks. But you have been in my thoughts.

You know, I am blown away by your incredible mindset and attitude to your challenges. You are such a positive role model and an inspiration.

13 on Tuesday eh? I hope you have the most wonderful day. Will be thinking of you and be sending you birthday wishes from this side of the world.

Take good care my little Australian rainbow.

Ali x

Anonymous said...

Hello Dainere,
Just dropping you a line to say a very special Happy Birthday for Tuesday! 13 is a wonderful age and you have lots of fun and exciting times ahead this year with school and the many other goals you are achieving.
This week will be a little cooler.
It's early morning and I have some doors and windows open and there is a slight cool breeze coming into the house. The first cool breeze we've had in a week or more. I hope you are getting it too. I noticed on the news and radar that Canberra has had some big storms this week.
I'm just a little north from you and we've had spectacular lightning and a little rain too. With all the stormy weather lately there have some absolutely beautiful cloud formations. Wonderful colours and shapes and different types of clouds. I love clouds!
Have a wonderful, wonderful week with your birthday and going back to school.
Lynda xx

Anonymous said...

Dear Dainere
There's lots of good news on your blog this week. You have been improving in leaps and bounds since you got going on your rollator and now, managing to walk unassisted for a short distance.

How exciting is that, our youngest granddaughter becoming a teenager on Tuesday. My! how time flies, not that long ago, it seems, you were playing dress-ups with the cats. We have a photo of you with Paris all dressed up by you.

Back to school next week too. What an exciting week.

We hope you have a wonderful birthday and enjoy your return to school where you will catch up with all your friends again.

Nan and Pop xxx ooo

Anonymous said...

So good to hear that you are stable Daniere and that your treatment will continue in Canberra.

Have a splendiferous birthday and enjoy your first day at school tomorrow.

As I mentioned earlier, I've recently retired, however I'm going into school today to say 'hi'. I've made the staff a slice - hope they like it.

The weather is so much cooler here.

Till next time,

Elizabeth xo

Anonymous said...

Hello (teenager) Dainere,

Have a wonderful 13th birthday. We know that your family will totally spoil you today - enjoy every minute!!! We hope that the year ahead is full of good health, much love and many rainbows.

Love and big hugs from us both,

Tom and Anna xoxox

Anonymous said...

haii dainere,
i havent been seeing this site much but my old teacher(elizabeth rayfield) got me up to date with the news.i had lost track of time and im very busy with my school stuff but i always think of you in tuff times.ohhh and HAPPY BIRTHDAY! it would be so much turning only 11 turning 12.i will introduce you to my new teacher for this year...i know she will like this.

lots of love :) Sheryl xoxo

Anonymous said...

Hi Daniere,
Happy, happy birthday. I hope you've had an amazing day celebrating all things Daniere! So glad to hear all of your exciting news -I always look forward to Friday afternoon when i get to find out what amazing things you have been up to during the week. Enjoy being Back at school. It will be great to back with your friends and learning new things. I'm sure they all will enjoy having you there.
Keep on smiling,

Anonymous said...

hiiii daniere
happy birthday to are now 13 yeahhhh
i hope u have a great birthday i'm turning 12 in may so thats not soo long away.sorry about not caching up with u miss rayfield came in 2day and told me and sheryl. we've been sooo busy cause we got into parliment/school captin and we've been trying to see whats happening with that soo yeaHHH so sorry about that.
i have to go have fun and have a great day.
love emily abela xox
p.s when i see a rainbow i still think of u heaps xxxooo

Anonymous said...

Happy birthday Daniere, hope the day was wonderful, and cool!! I have cancer (breast cancer) but more importantly I also have a gorgeous 12 year old daughter (turning 13 this year) so you must be in year 6, look out for all that homework!! It is a big year, enjoy and I'm so glad you can have some treatments closer to home - that's got to help make things a little easier as far as all that travelling is concerned

Hope tomorrow is a splendiferous day for you honey. (BTW splendiferous is going to be my "new" word from now on).

big hugs

Dianne said...

Dear Dainere,

Happy 13th Birthday, I hope you had a really lovely day! And I'm hoping you are enjoying in the cooler weather.

Finally, School tomorrow, how exciting! I hope it goes well for you, Jarrett and Nalani.

Lachie went back to school today - glad to see friends after such a long break. He is suffering some severe foot blisters from the heat and friction in shoes, which is making it hard to run and train at present. I hope it clears quickly.

I look forward to seeing you on Saturday at the Championships. Take care,

Lv Dianne xxxx

Anonymous said...

Hi Dainere

Happy 13th Birthday!!! Hope you enjoyed the day and had a nice celebration with your family!!

Enjoy school tomorrow!

It was nice to see you and your Mum and Dad the other day! We are always thinking of you all.

Hope Jarrett and Nalani are well too and also looking forward to the school term.

Lots of love,
Steph D and family xxxx

Anonymous said...

Dear Dainere

Hope today at school is a special, happy one for you and that the year ahead is full of blessings!

You continue to inspire with your strong, positive and determined attitude. Thank you!

Sending love and prayers,