Cannot Sleep

Hello.

I cannot sleep.

I currently have a blog that is ongoing because I do not have "enough" information to publish it just yet.
It is not completed to give it enough justification.

Tonight I woke with a horrifying realisation on what is my reality.

I am like a bull at the gate at the moment (sorry if that is not a proper phrase. Scott always tells me that I make up my own phrases!).

Tonight I have awoken in the middle of the night remembering that I have a child that is slowly dying.
I don't know why, but I have.

While preparing for the local council's "hard rubbish" pick up, I have sorted through photo's of the past few decades.
Many of these photo's feature Amelia walking, running and playing next to me or others.

Today I quickly tossed them aside.
But it has really resonated with me tonight.
Amelia refuses to look at them.

I now feed Amelia, toilet her, shower her and have great difficulty understanding her.

But back then?
She was happy, social, friendly and attempted to tackle everything.
She had SO many friends and had a massive social calender.

Now I battle with her anxiety, anger and sadness.

I battle with my own anxiety and depression!

And then there is her brother who is 3 years younger.

What is going to become of him?
When she passes, how is that going to affect him?
They absolutely adore each other and I worry about the life he will lead afterwards.
More cancer scares (which is highly likely) or illnesses that will affect his education and own anxiety.

Tom has the capabilities to "make something" wonderful of himself.
Whether it be entrepreneurial, or just an amazing, caring human being....
I don't really care.

I just do not want him to spiral into mental illness or addiction.

Normal life worries for any parent, hey?

xxx

RAW

I am pissed.

I am really fucking pissed off.

(Forward note before you continue reading...... I am fine.
This is all Internal and not being expressed to adored children and husband).


How the hell did Scott and I deserve this life??

We are no longer a loving couple.
We are partners in medical care and exhaustion only.

Amelia has gone so downhill since the operation in so many ways.
We have to do EVERYTHING for her now and it is shit.

In what possible way did we deserve to receive this much pain and pure utter exhaustion in life?

How is it fair that you now have to ask your child to repeat herself at least 3 TIMES so you can try with all your might to understand her?

The A-T would have been enough...
But NO.
Lets throw in cancer as well.........
and Type 1 Diabetes.

Lets give a couple so much worry and heartache and see if we can break them.

I am OVER IT.
Like seriously over it.

The threat of their being more cancer in the future......
More hospital stays....
Longer hospital stays....

Has seriously pissed me off.

What did we do and at what stage to create this future?
This life?

Amelia and I live in each others pocket, so to speak.
Because she has such high anxiety now, she will not leave us for respite.

Scott and I have NO time together.
When the beautiful Kate offers it.....
We SLEEP.

Like seriously?!

The amount of areas in our lives that have changed (meaning Scott and I) because of both Amelia's and Tom's diagnosis's is HUGE.
Some of it is good and some of it is bad.

And then there is Tom's life.
I cannot even possibly list all the ways his life has been affected.
I SO SO SO hope he continues to be the amazing kid that he is already....
But still?!?!
What kid has to help feed his sister and clean her from age 5?!

And Amelia?????
The worst list.
The absolute worst possible fucking list.

I cannot even begin to name what she has said to me and what I have seen her endure.

She is intellectually unaffected by all this.
How would you like strangers wiping your bum?

Who would grant such a miserable, horrible life to such a beautiful, caring child?


I am over it.

I want a 13 year old daughter that goes to the local High School and is having trouble socially.

I don't want a child that is 13 and has to have someone wipe her on the toilet.

I don't want her screaming at me that she wants "a normal life" anymore.

I do not want a child that I know is going to die anytime.... anymore.

It is almost 6 years since the initial diagnosis.
The fact that it was not the end of "horrific news" is ........
well indescribable.

This week I received a phone call from one of the friends lost in the last few years.
It was nasty and she was in "attack mode".
I was proud of myself for choosing to just hang up, rather than attack her back.

No one.
Absolutely NO ONE knows how we live and what we go through.

This is when Scott and I first met.
1990.

How is it fair that we now cannot have a loving relationship?

Why is it fair that we live day to day for our children's health issues?

At what stage did we deserve to be dealt this much pain?

I will continue with this life.

But I will always question why.

After her funeral, I will look back on this post and want this day again.

To have Amelia is everything.

I must remember that.

xxx

Post Cancer Appointment 1

Hello.

I have still not finished our story from over 3 months ago.
But I will.
I will get there.

Tonight I need to write about what happened yesterday.
What was said yesterday........

Tuesday, Amelia and I arrived in the city.
We had free accommodation for the night due to the 8:30am appointment at our local Royal Children's Hospital the following morning.
It was our first REAL appointment since the shock of finding a HUGE malignant tumour back in June.

At our very small apartment, a lot of TV channels did not work and there was no wifi.
No resturaunts nearby and the weather was torrential rain and extremely strong winds.
Amelia was becoming agitated and had already shown anxiety about the RCH day of appointments for the past 7 days.

I pulled out the cat book.
It is THE cat book of ALL cat books!

Recently Tom and I had chosen a book for her, while looking for books for him.
It has pictures and full descriptions of breeds.
It is cute and quite funny in parts, especially the cats that look like they have had a full on "perm!".

So we read it and we read it.
We read it for well over an hour.

Amelia was happy and affectionate.

Then a phone call came from Amelia's new paediatrition.

I had questioned a week earlier why she had to undergo an x-ray the following day.
A-T kids are almost contagious to cancer and the radiation from a basic x-ray can start the process.
The voicemail said to "get the x-ray. We will explain why tomorrow".

Amelia cried herself to sleep.
For almost 6 years we have had drummed into us NO X-RAY.
She believed the doctors were trying to give her cancer and from 9pm Tuesday night, I was helping them.

Amelia and I lay together in a queens sized bed as she cried herself to sleep.
The effects of the Post Traumatic Stress Disorder from the recent hospital stay.....
The decline in her A-T from all that has occurred recently....
She involuntarily shook.
Her whole body had tremors that shook the whole bed as she fell asleep.
Then it suddenly stopped.
She was asleep.

The next morning Amelia was in an unco-operative mood.
She did not want to drink the water required for the pelvic ultrasound.
She did not want to fast for the abdomen ultrasound.
She was petrified of "getting cancer" from the chest x-ray.

Amelia informs me immediately of her plan to call the 2 doctors we were seeing that day "malaka's".
That is dickhead in Greek.

TO THEIR FACE.

We are not Greek!

This was going to be a looooooong day!

The first ultrasound took 45 minutes.
It was of Amelia's abdomen.
She cried and screamed the WHOLE way through it.

I was on the verge of tears as we went to get her breakfast and to fill her bladder up with more fluid (so they could do the pelvic ultrasound).

The hard love approach of "silent treatment" worked.
She began apologising and saying "it did not really hurt. I just don't want to do it".
I explained to her that them finding cancer again is paramount to me.
"Let's just get through today and hopefully go home cancer free".

Unfortunately the amount of water required for the pelvic exam was huge.
No person would be able to hold it inside of their body for long.
2 hours after their initial appointment, I was begging the reception desk for that damn test!
She was about to burst and I had no change of clothes!

The next ultrasound did hurt.
I could see the muscles bulging on the doctor as they pushed SO hard to get the pictures needed.
Amelia is bruised and in great pain 24 hours later and I can understand why!
3 months ago she had major abdominal surgery.
She is still healing and rebuilding stomach muscles.
Whether it was a good idea or not, I do not know.

As we finally enter the oncologists room (2 hours late) we are rushed through.

He is visibly relieved as he tells us that all scans and x-rays of the morning are totally clear of cancer.

I began questioning him of his obvious relief and why she is having an x-ray when it is so not appropriate for an A-T child.

"Amelia had a MIXED germ cell tumour, not JUST a germ cell tumour.
I would normally order chemo, but because of her A-T and the risk of septic shock, I chose to monitor her instead.
I would normally order a cat scan every 3 months, but because of her A-T, I will happily settle for a chest x-ray".

"Why?" I asked.
"Why her chest?".

"Because she has shown that her body will just create a MIXED cancer on it's own.
Because data shows that much of this MIXED cancer will appear again.
There is a high probability it will appear in the future in the lungs.
That is where it will go next.
There is no operation that time to get rid of it.
It will just be treatment and we have to be careful of the A-T to not treat it hard and aggressive.
We would have to treat it alternatively.
We would be in "no man's land".

AND THAT IS WHY I am now shit scared.

xxx