Friday, 30 March 2012

Lots of PARTS.....

PART A : Whinge

I am so tired.

I have absolutely no tolerance for people complaining about "small" issues today.

I will not have any conflict or negativity BROUGHT into my life from others, when it is really NOT a big issue.

Sometimes I want to scream "GET THE F*#@ over it!!!".

People behaving like the whole world revolves around them and doing the "poor me act" for no reason is really grating on my nerves today.

I am witnessing people being diagnosed with cancer and married couples separating.
Children dying and people struggling with mental illness.
People needing restraining orders against violent people.
Having a child with "special needs".
Having no money to pay the mortgage.

These are REAL issues.

I, like anyone else, am a friend and will always listen to and support those around me
if you want to constantly complain about "normal" issues, please walk away.

An occasional BAD day is normal for anyone and I will always be here....but everyday?

PART B : Amelia

Struggling to recover from last week.
Just after I got "my Amelia" back she has to be taken away by medical procedures.
She is constantly asking "when am I getting an electric wheelchair?" as well.
WITH MY HAND IN THE AIR : In the next 2 weeks (school holidays) I solemnly swear to totally surround this child with love, fun and a safe environment so that she may be happy again.

PART C : Tom

Since we returned from Brisbane, Tom has been nasty, vindictive and angry.
It has been very difficult to be around him.
Apparently he was wonderful while we were gone.

WITH MY HAND IN THE AIR : In the next 2 weeks I solemnly swear to totally surround this child with love, fun and a safe environment so that he may be happy again.

PART D : A beautiful soul

This weekend a girl I went to High School with is running in the Royal Children's Hospital "Run for the Kids".
She has decided to run for 1 kid......Amelia.
She has had a t-shirt made with Amelia's Project logo.
She will be doing it alone.

What else can you say BUT
Thank you xxx

PART E : Macca's Night Raffle Tickets

The raffle tickets are ready to be distributed.
I have 50 in my "hot little hand".
Please contact ME or
if you would like some sent to your home address.

The McDonalds night is on Tuesday 22nd May 2012 and there are 10 prizes up for grabs (and there is always the fact that you are contributing to Amelia's electric wheelchair).

Good luck to all "school aged" parents on the impending 14 days.
WITH MY HAND IN THE AIR : I solemnly HOPE that you all come out of the other end unscathed and richer for the experiences that you had with your children.

ALWAYS feel free to Share.


Wednesday, 28 March 2012


While working through my own "debriefing" of the events at the clinic last week, I have been able to evaluate why I fell apart.
By "working through" I mean thinking about every little detail and accepting the information.

I entered a situation that was very different to last years A-T Clinic.

Last year, after the initial diagnosis, we had been told in Melbourne "go home and enjoy every day. Cherish your little girl. There is nothing we can do help you".

When we arrived at our very first A-T clinic in March 2011, I was given a very strong feeling of HOPE.
There were many people researching and trying to find at least a treatment for A-T.

In Melbourne, Scott and I were given the impression that nothing was being done.
In Brisbane we learnt this was very untrue.

Last week was very traumatic for a number of reasons.

Amelia was very frightened and kept saying "I am scared".
She also cried a lot.
She had to have lots of tests on machines while awake.
She would not participate in having an MRI because she was so frightened of the machine.
As much as I would love to have the effect of the A-T on Amelia's brain monitored, I cannot force her to do something she is so scared of.

The anesthetic was frightening.
The 4.5 hour wait at the hospital did not assist with the anxiety levels (for Amelia or myself).
While under anesthetic, Amelia had skin removed from her arm and nose for stem cell research.
The scientists are hoping to create "A-T free" cells with the intention of injecting Amelia with them at a later stage.
This would help replace the ones dying.
Obviously only a possibility at this stage.

While asleep they also took various blood tests.
These will determine what "type" of A-T Amelia has and check her immune system.

She woke up distressed and sad.

Then I was taken away to have the skin biopsy taken from my arm.

The doctor doing the procedure did make it a little easier.
He said "I am about to give you a little prick from a big prick" while administering the local anesthetic.
Then proceeded to tell me "I know how to do this because I have been studying it all night on You Tube!!".
He gave me a good laugh.

We did not leave "outpatients" till 6pm on that second day.
Amelia managed to sleep 11 hours that night.

The next day was just as busy.
Lots of clinicians needed to see Amelia and I.

I realised very quickly the decline Amelia has experienced in the last 12 months.
The eye tracking was a lot slower.
Her vision is becoming blurry.
The reliance on the manual wheelchair more.
The fatigue........

The respiratory specialist spoke of Amelia's lungs being extremely healthy for someone with A-T.
Then he proceeded to explain the danger to her lungs from now on.
The need to listen for a "moist cough" while eating, drinking and resting.
This would mean that something has "passed" into the lungs instead of the stomach.
To be aware that a feeding tube may be needed sooner rather than later (or at least a thickener in liquid drinks) to prevent any damage to the lungs in the future.

Now, of course, I am worried EVERY cough is a "moist cough".

Then I had my nasal procedure.
I experienced nausea and tears all afternoon, but still needed to sit with 3 more clinicians.

We have returned with a lot of vitamins and antioxidant liquids.
This will be part of a study on the immune system and neurological decline.

I am experiencing difficulty in getting these "into" Amelia.

Finally it was the realisation that we will never go back.
We will never get back the brain cells lost.

The OLD Amelia will never be our Amelia again.

We may be able to "halt" the disease and stop it progressing but when will that be?

Makes me question "quality" of life over "quantity".

So, the past 8 days have been about grieving....again.
Accepting the future we have been handed and accepting Amelia's progression into A-T ......again.

I am not boarding the pity train and I am not spiralling into depression.
I have just been presented with a realistic focus on Amelia, A-T and our family.

I can actually say I am glad because I can be better prepared for what is ahead.

Finally, in my processing, I realise how RAW I felt last week.
How unbelievably naked it feels to have everything and everyone far away and just the disease in front of you.
I realise how lucky our family is to have such a large amount of support and love around us everyday........


Monday, 26 March 2012


Thank you.

Thank you for all the messages and visitors (that I tried to ignore) today.

It really does help get me out of the gutter of negativity.

I still have a lot to process and work through from last week.
A lot of information...........

And more acceptance.
A process I thought had already happened for me.

For now I would like to share some photo's taken in Brisbane last week.

 Breathing test.
Amelia has very "healthy lungs" apparently.

 A 25 minute test of breathing while "resting".

 Our new best buddy, "leila", from Sydney. 3 years old.
Diagnosed November 2011.

 My first procedure.
A blood test.
I had NO idea what was coming in the next two days !!!!

 My baby and I.

 Amelia about to go under anesthetic.

 My nasal biopsy.
The BIG silver prong is sticking out of my nose.
First you have an anesthetic spray to numb inside the nose.
Then liquid cocaine to assist with the numbing.
This felt like the "dry ice" feeling when you are having a wart burnt off.
VERY painful.
Then a needle of local anesthetic.
Finally a biopsy is taken in 10 seconds.

 After the procedure I can honestly say "I lost the plot".
I sobbed for 3 hours.
Apparently it was from a reaction to the cocaine as well as relief it was all over.
I had been terrified earlier.

I feel so sorry for the poor nurse in the room with me.
After 90 minutes she even insisted on driving me back to the Clinical Research Centre.
But I could not have asked for a kinder, more compassionate person.
Julie.....thank you sooooooo much.

 The skin biopsy from the arm.
With stitches.

 Supermodel Amelia.

 Supermodel Leila.

Amelia and her new "best buddy" Jodi.
With all the procedures and emotions we would not have survived the week with out her there.


Tomorrow Scott and I will have been married 13 years.

Last Thursday we had been "together" 22 years.

Scott is and always will be my soul mate.

Probably explains why after arriving home from Brisbane on Saturday, I got out of my car and fell straight into his arms and cried.

Love you forever and ever Scott.


Sunday, 25 March 2012

Damaged Goods

I do not know if now is the best time to be writing.
I do not want to talk to anyone.
I do not want to see anyone.

I feel like I have gone "full circle" back to when Amelia was first diagnosed.

I am at a "crossroad" again.
Positive and negative thinking.

The past week could be almost compared to the week we spent in hospital in December 2010.

The tears, the worry, the waiting and the pain.

The discussions, the observations and the advice.

It is no one's fault.
It is the disease.

My positive thinking has taken a battering.
My hopes for the future have received a realistic blow.

The preparation for the immediate future is now right in front of us.

No more enjoying the good times because the bad times are

I am really struggling to comprehend what is happening to Amelia right now.