Friday, January 20, 2012


14th to 20th January 2012

With the Summer radiant sun shinning ever so brightly in the sky outside this week, I received the news that I have an earlier date for my MRI on my brain, it is now on Tuesday 24th of January, it is very early in the morning at 8.15am, so I will have to be up and about at the crack of dawn.  My Endocrinologist kept pushing for the date to be brought forward as he is very concerned by the headaches I have been having since beginning my Genotrophin, the growth hormone.  Since been off them, my headaches are not constant but I am still experiencing some and many of them are not very pleasant.  At times I have felt like I am being stabbed in my head and it makes me cry, but at least they are not constant now, so that is a positive.  My spine MRI has now been moved to 1st of February when my brain one orginally was and I now don't have to have one on my Birthday.

This week I have taken it easy and spent time resting and enjoying the school holidays with my family.  We have been playing board games and watching some movies that we got for Christmas.  With the weather being quite hot again doing those type of activities are probably the best to do.  Nalani, Jarrett, Mum and I did go and have a game of French Cricket the other day, we had a splendiferous time, it is something that is not too difficult for me to do.  As my foot is still painful to put weight on, I played from my wheelchair, I could not do any diving catches like Jarrett but I did take a few catches, as well as getting to bowl and bat. 

Yesterday was a very special celebration for Nalani, it was her 18th Birthday, she is a wonderful sister and I was so excited to be celebrating such a wonderful occassion with her.  She did not want a big party, she just wanted to do something special with us, so we took her out to dinner along with Uncle James and Aunty Kate to a place called Bella Vista.  The food was scrumptious and they made her a special cake, it was a croquembouche or croque-en-bouche, this is a French pastry the name is a French one and it means 'crunch in the mouth', it was invented by Antonin Carême and they made it on MasterChef one year.  It is a high cone assembled of choux pastry filled with a custard cream it was bound with caramel and decorated with threads of caramel.  They brought it out with a sparkler alight at the top of it, it was incredible and the best part was that it tasted as good as it looked.  The pastry was so soft and light and the creamy custard filled made your tastebuds tingle with delight, then you got a crunch of the sweet caramel.  

Jarrett is back at running training again, he is so pleased that his injury has now finally healed properly, he was so frustrated when he was not able to do his full training schedule.  Now he can build back up ready to compete at the ACT Junior Championships and the Australian Youth Championships which he has already made qualifying times for. 

I have found a bike that someone with a disability, who has balance problems or is elderly can ride, you see something that I used to love to do and missed so dreadfully following my diagnosis was riding a bike.  You can get a tricycle, one of the brands is a Gomier tricycle, these tricycles have a low step-through height which makes it easy to mount and dismount.  They have an adjustable head stem which gives you a more upright riding position and this also lowers strain on your lower back.  The seat has extra padding is is wider than a normal bike seat so this cushions your ride.  It has a strong, durable steel frame, lightweight aluminium rims, it has six speed shimono gears and non slip pedals which help grip.  It has a large basket on the back so you can carry things in it even some shopping and it has great stability so this is what makes it so ideal for people with a disabilty or even elderly people who may be unsure of riding a normal push bike.  I am so excited that have discovered this and can share it with you because it means that there is a way to ride a bike, when you may think you can't. 

They say laughter is the best medicine so I must share a funny story with you now,  when we were at running training the other day, I was sitting under a tree enjoying the fresh air when I felt something hit my head, it actually hit quite hard and hurt a little, I thought it must have been a little nut but I could not locate one anywhere on the ground near me.  Suddenly Mum gasped and told me that a bird had left a little message on my head scarf.  I took my scarf off in horror, then wondered how it could have felt so hard and hurt.  Then I began laughing, what an unusual thing to happen, Mum told me it is actually lucky to have a bird do that. We then thought about it and we decided it was lucky because if I had of been wearing one of my wigs it would have been much more unpleasant and messier to clean up than on my head scarf!

Next week is a busy one for me, I have physiotherapy on Monday which I am so relieved about, my foot is still quite painful, I also have been experiencing terrible back pain, so hopefully Kaitlyn will be able to assist me.  Tuesday of course is now my MRI, which I must admit I am a little nervous about because of the headaches I have been having.  I also have to have a bone age scan done that day while I am at the hospital as my Endocrinologist ordered it to be.  On Wednesday I have a hair appointment, I don't have much hair to cut but it is always nice just to have what I do have trimmed a little, I am also getting the fringe on one of my wigs trimmed as it is a little long and pokes me in the eyes. It is actually quite fun having a wig trimmed as you get to wear it and it almost is like having real hair trimmed.   

I am still looking for some unique and creative ways of raising funds and awareness this year for brain tumours so please keep your ideas coming, I appreciate the ones that people have already given me.  Remember that brain tumours are now the number one cause of death from cancer in children, that is so devastating and that is why I want to raise more awareness and funds. 

Enjoy the splendiferous Summer weather and remember to make the most of every day, start it with a smile and open your heart to those in need.


Anonymous said...

You continue to be so inspirational. Hope all goes well in your MRI.

Anonymous said...

Hi Dainere,
Just a very quick virtual hug from me so you know that I'll be thinking of you especially tomorrow morning.

Anonymous said...

Dear Dear Dainere, so sorry we are a little late in getting this reply to you , we know you've had the MRI , and we pray that all has gone ok .Álso that the bone Age scan went ok too oh excellent news that your birthday is a day for you now and not an MRI . WE are soooo pleased for you .

So happy to hear you've been taking it easy .

Ha excellent glad to hear you played French cricket Dainere thats magical , well done , its good for you too.

oh my , the birthday sounds lovely and how nice of your beautiful sister to just want to do these things with you and the family . Yum yum , you are making my mouth water with the description of the cake .

Glad to hear Jarrett is also back on track.

Oh the bike story is just fantastic Dainere, how good for you too , you get the vital exercise you need , well done , we hope you get endless pleasure from it .

Love the story of the little present the bird left you hahahahah
Thats an Isaac Newton story isnt it .

We hope you are continuing to receive some ideas Dainere for fund riasing ,.

You are always in our thought , and you lknow that you simply amaze meryl and I for how you cope with each challenge .

Much love and hugs , Im sure you can feel the hugs from Meryl and i right , one at a time of course . stay strong our beautiful friend .

Much love
stuart and meryl xxxxxxxxxx

Anonymous said...

Hi Dainere

By now you would have had your appts, everything is crossed for the best outcome Dainere, hope it was not too unpleasant. Pain is just shocking, you've endured more constant pain that imaginable, I pray that you have times of relaxation, without pain!

Holidays are almost over, I have my sons birthdays to celebrate this saturday night. Luke wants a caramel mud cake and Ben wants a cookies & cream cheesecake. I will make both cakes as I enjoy baking. Nalani's cake sounds delicious, how wonderful that you had a great night out with your family.

Your bike is very cool. I'm sooo excited for you, there's nothing like a bike ride. Have you taken Tinkerbelle for ride in your basket yet? Or is that not safe? You can ride and feel the breeze
against your face, it's a great way to get around.

Keep up the resting periods, did you watch the nre Young talent Time? Soon My Kitchen Rule starts, will you watch that? I'm lloking forward to it, especially the girl that always says "Yeah" on the commercials.

I anxiously await your news, have fun at home this week, Love Fran xoxo

Anonymous said...

Dear Dainere,

I've been wondering how Tuesday and the MRI went. Hope it wasn't too much of a strain getting up early for the early appointment.... not so good to have to get up early in the holidays! They are always good to have a sleep-in.

Do hope the headaches have continued to decrease. So much pain is not good. :-(

So glad Nalani had a great birthday. It's always nice to have family celebrations. Her cake sounded delicious!! And good, too, that Jarrett is back to training. When are the ACT Championships?

The bike looks terrific - have you had any more rides? It must be a lovely sense of freedom to go flying along!

How was your hair appointment? You certainly have been busy with appointments, etc, these holidays.

Another thought for fundraising is a "lap-a-thon" where you get all the club members to get sponsorship for each lap they complete at a carnival or club night, etc. Or you could also do it at the school athletics carnival. Or maybe incorporate it into an Olympic Games theme event.

Hope Nan, Pop and Chifley aren't affected by the floods up north. Unusual weather we are having....

Keep on keeping on, special one,

Love and prayers,