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