My Beautiful, Sweet 15 year old.

Hello Dear Friends,

7.5 years ago I began writing about our child's horrible diagnosis.

Amelia was 7.5 years old.

Fast Forward 7.5 years and she turns 15 years old tomorrow.



MAJOR MILESTONE from the day in December 2010, when the hospital told us to "go home and cherish every single day. There is nothing we can do".


You all now what we have gone through and what Amelia has "lost" in the last 7.5 years.
So many of you are right beside her regularly or have been at various times along the journey.
Many of you have followed our journey through my writing.

Those closest to Amelia may struggle, fail in many areas and outplay emotions irregularly.........
(it is hard to live in this house and watch and help with the daily struggle).

BUT what her life, her personality and her words have taught us, is life changing.

I like to think of this trait as "what she has gained".

She regularly alters a persons "life pathway" and makes them see their life differently, without realising it herself.

I know she has changed my life greatly since she was born.

I now sit back and enjoy watching it happen to others.


Happy 15th Birthday beautiful, sweet Amelia.


May your week of celebrations bring you great joy.

May your long lists, demands and requests end after your birthday week!!!!!!
I am exhausted!



Some photos of Amelia's life so far follow.

xxx

We look forward to celebrating so many more years with you.

xxx

How Would You Feel? By Tommy Nicholds

How Would You Feel?

By Tommy Nicholds


11 Years Old.



How would you feel if your sibling could not walk for the rest of their life?

Well, my sister can't, because she has a brain disease by the name of Ataxia Telangiectasia.

Yes, It's a mouthful!

It is also commonly known as A-T.

Today I am going to be talking about how it affects my life and also how we can find a cure.

Over the last year and 3 months, Mum and Amelia, my sister, have gone into hospital at least 5 times, which is very hard being separated from each other.

The occasion that I will be talking about today was in June 2016, when Amelia was diagnosed with Ovarian Cancer (which is one of the complications of A-T).

I don't know the exact date, but it was a Friday night after school, and I was told to got to my Poppy's house, when the school bell went.

Why?
Mum always picks me up.

(Around June 2016)

When I got to  my Poppy's house, they sat me down and we had a discussion with Amelia and Mum on FaceTime.

Amelia was really sick and no one knew why.

Mum and Poppy seemed scared.

Amelia was crying about the tests they were doing to Amelia.

That night I was very worried, because no one knew what was going on.
Everyone seemed worried and scared.

The following next week, the doctors found out that Amelia had a 14 cm wide tumour, which was full with 1 Litre of Fluid.

I didn't know much about cancer, but I still broke down in tears , because I knew it was dangerous.

That week I was very down and emotional because I didn't get to see anyone in the family, since dad still had to work.
I couldn't help but cry in bed some nights.

I really love Amelia and always have.

I am only 11 years old.

My teacher was very supportive that week, because I would come in each morning and fill her in with all the news.

During the day she would sit our whole class down and explain what was happening with Amelia and then all the other kids in my class would share their stories about families and friends that have experienced cancer and other scares.

It was a week before my 10th Birthday (2016), and I was begging mum to come home for the weekend.
I began begging mum to come home for my 10th birthday weekend.
They did, which restored my happiness.

(I now Know how much work this took)

An hour before my birthday party, Mum explained that Amelia had become a lot worse.

They had to leave straight after the party to return to RCH.

I was devastated and it was in the back of my mind during my entire 10th birthday party.

Mum and Amelia are about to leave indefinitely.
Amelia may die from this.

Will Amelia return from this operation that everyone is so scared about?

Two days later, doctors performed an operation to get the massive ovarian tumour out of Amelia.

People all over the world wore pink to show their support of Amelia.

That day I was feeling nervous about Amelia and nervous and this operation.

I began to channel my happiness into seeing all of my friends wearing pink at school, and seeing Amelia and Mum later that week.

The Operation was a success.

Now I am coming back to the present day, where Amelia wakes up smiling, laughing and playing with her friends, every single day.

That to me is true inspiration..

Thankyou for listening to my story about our family.

I hope I made a difference.

Amelia is amazing.

Hello Friends,

I recently published this blog without finishing it properly.

I would like to finish it properly now!

We are all travelling really well right now and I am so incredibly proud of us all.
We are surviving and all feel SO loved.


(I will update about Amelia's hands and NOW feet at a later stage.
Degression and A-T are savage and nasty.)

Please enjoy some ok stuff for now.


I recently passed someone so bitter and mean, in the street, that it made me actually happy.
They are gone out of our lives now!

Toxic people are now gone.
100% gone!


Scott has just changed employment.
It is a role that took 2.5 months of tests and interviews to get and we are all incredibly proud of him, for surviving "the cull".

Scott has always had an amazing logic, street intellect and vibe.
It is a job that he will be able stay with for life.


Amelia has adapted to her new carers so well and we are all so incredibly proud of her.

(and we all really like them!)

As all of you know, I have been her main carer, since she was born.

2003.

Last year I began speaking to her about the unnatural connection we had developed.
She agreed quickly.

She was 14 years old and had never been separated from me.

She needed independence and loving connections to others.

I needed to find me again.



Amelia has fallen in love with 3 of her carers.


To watch and to listen to them has been amazing.

I know and hear that they feel the wonder of Amelia.

They have a lifetime to remember her and they are showing the impact of her on their souls.


I feel honoured to share the gift of Amelia.........




Tonight we were watching an episode of "The Voice in Australia".

The episode discussed the "medicine" of music.

People were discussing how music helped them through a death, bullying or love heartbreak.

I paused the episode to explain to the kids about how music has helped me in recent years.......

I know how I have spammed you all with music when I am really struggling........

But I really want you to close your eyes and imagine my explanation of each individual in our family tonight.

Especially when we are in a really good place and hope to stay there....

Many of you will have heard all of these already......

Get a cuppa (or wine!) and survive the ads.

Imagine the minds of our crazy family!

My message for Amelia....
It was when I finally realised that she will show me an amazing life guided by herself...... No matter how short.
https://youtu.be/jgfxmlAZUWU

My message for Tom.......
https://youtu.be/jpTYG_Sqqdg

(We are seeing 90% evidence of siblings RUNNING when 18 from a family with a disabled child. Their own sibling. We are determined to not let this happen).


From Tom....
On my own page.
"He gives everything to others" Tom said

https://youtu.be/xpVfcZ0ZcFM


On my own page, a message FROM Scott to me.....
https://youtu.be/UfmkgQRmmeE

A message from me TO Scott.....
https://www.youtube.com/watch?v=lp-EO5I60KA

BUT
For all of you.....
This one.
https://youtu.be/bwB9EMpW8eY

I will never forget this song during Amelia's cancer diagnosis.
3 weeks of all of you keeping me upright, functioning and demanding answers.
(Code Grey was also threatened when they were going to do wrong by her!)

https://youtu.be/bwB9EMpW8eY

These 2 songs have been Amelia's in the last 2 years (12-14 years old) to get her through hard times.....
https://youtu.be/xo1VInw-SKc

and 

https://youtu.be/xo1VInw-SKc


THESE ARE THE NEWEST ONES....
(Tom has requested that Amelia get Bluetooth headphones, because he believes hearing them 89 times is quite sufficient).

https://youtu.be/gdjR2lvIfJ4
(she has secretly fallen for Zac Effron)

and.....

https://youtu.be/CjxugyZCfuw

This one is quite profound.
It is about anyone with "difference".



But when I asked Amelia to choose her favorite song of life.......
She chose this one....

https://www.youtube.com/watch?v=t_YXSHkAahE

Quite profound really.

She always chooses or says the things that blind side me.

I seem to absorb each child around me and "their meaning" and "purpose" a lot!

Life as a parent?!

Recently Amelia said to a new carer incredibly innocently....


" Apparently I am famous. I never meant for this to happen".


Nor did we Miss Amelia.

But when someone so incredibly profound, innocent, knowledgeable AND
MIND BLOWING as you arrives, we need to speak about it.
Your messages are always profound and mind blowing.

You have shown and proven so much in the past 8 years.

We have no choice BUT to share your words.

We may not be religious, but we can still listen.

Thank you for taking the time to listen.

xxx

Real for Life and stuff!

Hello Friends,

(Please read until the end, because it is VERY important!)

High Five to all those that have survived the school holidays....the end is finally in sight!

Commiserations to those that are in the corner rocking!
(maybe the latter is just me!).

Lots of sad things have happened around us in the last 2 weeks and our love and thoughts are with many. Adored family members and very loved pets passing away is heartbreaking.
Every message has made us all sit in heartbreak and emotion.

We have also been so incredibly busy that we are all very tired!
My inability to write everything on the calendar these holidays has created a few obstacles, but we survived and still attended!
(IF YOU MESSAGE ME a get together.......please say WRITE ON CALENDAR!)

As someone very wise said to me recently "Other peoples lives is none of my business. No one knows what really happens behind anyone's front door".

I am slowly learning that and learning not to discuss things about others anymore.
Mainly my husband and children.

I can happily say that due to stress, our house is the best it has ever been!
Decluttering and tidying up the house, declutters and tidies up the mind!

I have spent 8 weeks on it and will finally finish my mission tomorrow.......
the arrival of the firewood!

Everyone knows that my fireplace is my Valium and anti depressant due to the seasonal depression I suffer.
It is like a squirrel gathering its nuts for the winter!
I cannot wait and will be sooooo prepared!

We finally had our NDIS meeting in mid March.
(National Disability Insurance Scheme. An application to get everything and anything Amelia needs and wants to help create her amazing life. Paid for by the government)
60 odd hours of work from myself and many awesome professionals around us.

Today we received word that it has had to go to "a higher body" due to the amount required and asked for. It is big and needs to be assessed closer.
Cannot wait to hear their end assessment.
(we asked for a lot)

Amelia and Tom are good.
Amelia is speaking her mind A LOT now (we have gone from one extreme to the other) and Tom.......well he has always been incredibly outspoken!

Amelia is not liking her class this year at school, but we are so proud of her for talking to us about it. We will be addressing the changes that need to be made next week. Her life is too short to think otherwise.

Tom, Scott and I are extremely confused on High School's for next year for Tom , due to Tom loving one and all of his friends going to another.

BUT we are all good.
We have a large amount of communication and an even bigger amount of love AND communication.

We may have a 14 year old who needs 100% assistance in toileting, feeding, moving, reading AND drinking......BUT she needs no help in intelligence.

Amelia had ovarian cancer.
We have been told it will return somewhere else in her body.
There are multiple organs that a "mixed germ cell tumour" could suddenly appear in apparently.

Ataxia Telangiectasia (Amelia's original diagnosis in 2010) has a major link to cancer. It is one of the major side affects of having A-T.
Amelia got it at 13 years old and it has a high probability of returning.

3 weeks ago Amelia had the regular surveillance ultrasound on her abdomen and pelvis.
RED FLAGS have been waved over the lesions on her liver (we have been keeping an eye on one and now another has started).

Blah Blah Blah Blah

Still waiting to hear.

Welcome to the life of a special needs parent.


If you can walk for 10 minutes, 30 minutes or 60 minutes for ALL cancer................
Please join our team.

Amelia is so incredibly proud to have her own team this year.

"Amelia's Fluffy Unicorns"

Could there be a better name ?!?!
As you could imagine, Tom is beside himself about asking his friends to join a team by this name!!!!!

SEPTEMBER 22 - 23 2018

4pm Saturday till 11am Sunday.

30 Mins will helps us greatly.

She has chosen the name and we all sincerely thank Emma for constantly confirming with Amelia.

Please join whether you can walk for 10 minutes or 4 hours.
ANY help is extremely appreciated.
We will continually walk from 4pm Saturday 22nd September till 11am Sunday 23rd September Sunday as a team.

Tom and Amelia are desperate to ask their friends to help them!

(please consider a unicorn anthem or costume when registering!)

BUT let me tell you all...

You have never seen anything like this.

cancer affects us all.
this organisation helps us all.

Please donate or join our very long walk below. 30 minutes would be awesome!

http://l.facebook.com/l.php?u=http%3A%2F%2Fccau.convio.net%2Fsite%2FTR%2FRelayforLife%2FCCVIC%3Fteam_id%3D60462%26pg%3Dteam%26fr_id%3D5396&h=ATObFOj5Z7EiI3scwQg1LebJQMy8ZhliufrDvA0Hl53Xxq0oUUmzUTX9Sm09Ninl-i4t1ULwOUTiw38X33YlEUP3k0gegkSeGnd3fNgTrNokA75pMiXn

xxx

ICAN walk

Hello and HAPPY EASTER 2018!!!!!!!

Thank you for your beautiful responses to Tom's 50km walk.
Reading all the messages, really made our hearts swell.

I was like an annoying leech throughout the whole experience.
I was there at the beginning and every single spot, until the end.

I drove past these amazing walkers, IN A CAR, and waited approximately 50 minutes each time, till they met me at the next destination.
EVERY stop!

(Tom's diabetes levels made me do it)

I chose to TOOT the horn a zillion times EVERYTIME I passed anyone with a white ICAN t-shirt, on my way to the next stop.
It made me feel better for driving the whole way!

At one point, I saw Tom look at me and roll his eyes, but I just tooted more!

At the halfway point, in front of many others, he came and kissed and hugged me.
"Thank you for helping me through this" he said in front of anyone listening.

I almost cried until I looked at all of the other adults around us.

Parents walking WITH their kids, parents providing snacks and lunch at ALL stops for ALL kids AND teachers WALKING to supervise everyone.
Adults everywhere supporting.
I was just supporting MY own and with HIS Type 1 Diabetes.
Who knows the reasons for other adults!

Absolutely mind blowing!

NO ONE could name a time that RCH had helped them or their family.
They were just doing it!

My family and I waited 60 minutes for Tom to come into distance at the end.

For Tom to begin the finish stretch.

4pm and we are waiting for a walk to finish that began at 7am.

None of us had a dry eye as he approached the finish line.

As I yelled at the people who stood in front of Amelia to MOVE!.....

We all screamed, clapped and blew whistles.

He had made it.

I think I had held my breathe the entire day.
I think I had been stressing about it since he signed up 6 weeks before!

Of all the 30 Primary School aged kids, no one had asked to go on the bus or get in a car, at any point.
It was amazing to witness.

I did not just cheer and congratulate Tom at the end....
I cheered and congratulated many children and adults.

It was a race I had no way of completing myself.

In the end they raised over $145,000 for a hospital that has saved our daughters life repeatedly and keeps her alive now.

THANK YOU EVERYONE xxx

Tommy OR Tom.

Hey Guys,

We have a very tired 11 year here at the moment.

He walked 20km's today in preparation for the 50km walk next week that he has signed up for.

It is to raise money for our local Royal Children's Hospital.

50 km + Type 1 Diabetic has meant a very stressed out ME for weeks now.

(How the hell is he going to do it as a Type 1?!)

During and after is going to be dangerous for Tom's levels.

It will more be after.

When he rests, his levels will plummet and no amount of apple juice or jelly beans will keep him safe!

One game of football (90 minutes) causes dangerous levels afterwards!

He is walking from Luna Park (St Kilda) to Frankston Pier....
IN ONE DAY.


"WHY IS EVERYONE SO NEGATIVE ABOUT ME DOING THIS?" he yelled at me last night.


I admit he has copped a lot of negativity from those close to him.
Those that are scared for him.
Those that are worried about his diabetes.


"I WANT TO DO THIS TO THANK RCH,

FOR SAVING AMELIA'S LIFE.

AND KEEPING HER ALIVE NOW.

WHY CAN'T YOU ALL UNDERSTAND THAT?!" he continued.....yelling.


I do understand that.
I just believe we may need to live in an Emergency Department for at least 12 hours afterwards!

When Tom stops moving his levels plummet quickly.
I am incredibly scared about when he sleeps that night.

I also understand that he loves his sister dearly and that we have taught him that diabetes should not ever stop him from anything.
(THIS may be taking that last comment a bit too far though! LOL!).


If you have $10 to spare please consider sending him a positive comment.
He obviously needs it right now.
(Due to our negativity and worry!).

Tom will always be his sister's advocate, beside Scott and I.

I am scared about next Thursday, BUT YET SO INCREDIBLY PROUD!

He just wants to do this for his sister.

 

Tom adores Amelia.

It is the only life he knows.

 

Loving, supporting and keeping his sister alive.

 

If you have some money to spare and a supportive message (that you may even have used for the Good Friday Appeal) please send it to Tommy, at

 

https://goodfridayappeal2018.everydayhero.com/au/2018-l-p-s-ican-challenge-1

 

Thank you.

 

(I will be driving the whole walk and meeting Tom at every "stop". Any positive comments for me on the 4:30am wake up and staying awake through out the day would also be greatly be appreciated!!!!!!! LOL.)

 

Thank you!

Hello Dear Friends,

Thank you.

Thank you for sharing yours and our happiness about Ed Sheeran.

Your likes, loves and comments have been spoken about LOTS!

Thank you for sharing your love, enjoyment and pure excitement about Amelia meeting someone so famous!

But more importantly, someone Amelia REALLY wanted to meet.

We have in all honestly been in shock since Sunday night and in a daze!

Amelia is an AMAZING judge of character and realness.

After watching lots about Ed on YouTube and through other channels in the last 2 years, HE is the reason she finally decided to use her ONE wish in this lifetime of terminal illness.

She 100% knew he was what she wanted to use her wish on.

WHY?

To thank him.

To thank him for all that he does for others.

That is all.

That is all her wish was.

1 wish in life and that is it.


She just wanted to thank him.

Not about her.

One wish and she just wanted to thank him for all that he does for others.


(He does A LOT. Google It).


No interstate trip or Limousine service like other Make a Wish Kids.

Just look him in the eye and thank him for all that he does for others.

That is all Amelia asked.



We met him.



He was so normal.

Soooo incredibly normal (and yet so obviously busy).

But he made Amelia feel important and special and also Tom.

He spoke to all of us as a friend and answered everyone's questions.

But we did not ask for anything.

Just a photo.
Nothing to be signed.

(Unfortunately a fan page on Instagram has stolen our photos).

But we have a memory.
And Photos.


A memory of an everyday guy saying yes to meeting us.


A family battling to pay the bills and make an amazing life for 2 awesome kids with medical conditions.

Cannot improve on that too much more at 43 years of age (for me).


(We have increased our mortgage in $200,000 plus in the last 15 years because of nothing really.

Just surviving on Amelia's special needs, only really, and giving away Amanda's professional career and possible income.).


But you know what?


We will have No Regrets At The End.
We do not care.

This is our life and our situation.

Amanda and Scott made it their mission and will make it happen.
To create no regrets without begging people for help.

They gave birth to these children and we will do everything they can to help them.
It is their unknown fault due to genetics and they will strive to change or improve it.

What a lifetime achievement to add to Amelia's and Tom's list!
Many individuals striving to help them.

Amelia and Tom know they are so incredibly loved and how much we did not know.

An amazing life.
No matter how long.

xxx