Hello long term friends,

The last 4 weeks have been stressful.

Amelia began the morning vomiting again 4 weeks ago.

Many would remember that it occurred for 2 years before the ovarian cancer was discovered.
TWO YEARS beforehand!!!!

To everyone in our house it will always be a reminder as the only cancer symptom.

I decided over the last few weeks to be realistic.

Many know that I try to avoid being the over neurotic parent at RCH.
I also do not want to stress Amelia and Tom out unnecessarily.

Scott and I looked at new medications and possible scenario's that could be the cause.
We eliminated and documented possible causes and when nausea and vomit occurred.
(No mention to Tom)

Each vomit, I would say "One more time" about taking her to emergency.

Every family member mumbled "It is just like the cancer again".

I rang the hospital repeatedly in the third week and was always told "Leave it with me. We will get back to you".

As we began the fourth week, no one had returned any of my calls, so I packed a bag and headed to emergency.

After so many days of thinking.....

Remembering the post ovarian diagnosis.....
Remembering the "It should have and could have spread to the chest and the brain"....
"It still may appear. This cancer can just appear in the chest or brain".......

The "we will monitor the chest, brain, abdomen and pelvic area consistently"......

The brain has never been checked post operation.

Everything else is checked every 3 months.

The current symptoms are showing cancer is somewhere.......maybe.........

I watched the emergency doctor examine her.
I purposely chose not to mention much.
I wanted to eliminate the "neurotic mother" thoughts I was personally experiencing.

Suddenly she was trying to organise an immediate MRI of the brain on a Monday night.

My concerns had been confirmed.

Our main department for "rare diseases and conditions" became involved and witnessed Amelia vomiting early the next morning and also began pushing for a brain MRI.

For the first time they listened to me and documented my concern's.

Those concerns are now probably listed right next to all my concerns in the past 11 years.
The ones where I really wished I wasn't right.

We waited and waited for that so called "emergency MRI".

Amelia was nauseous and tired and pale repeatedly in the following two days, but I could not be any prouder of her resilience and coping mechanisms.

Amelia has been AMAZING.

We have both coped SO well.
The both of us.
Totally NOT like last year.
So many positives and laughs.
SO many competitions for the better laugh.

Amelia has told staff off for not following the correct procedure....
"You didn't scan my wrist band before doing my obs"......repeatedly!

We demanded to see the staff members she adores that put a smile on her face (and they came and they did!).

Amelia is now part of so many departments she is like a regular now!

They took her regular tablet medications off us due to protocol.

When they wanted her Insulin, I fought it.
They take at least an hour (due to 2 nurses to 12 patients) to get it to us.
Her food is cold and she is distressed from being starving by the time they bring it.
(Insulin before food).
I won and it never left us.

She has been nauseous and vomiting for 3 weeks, but now she came to her own conclusion of what the MRI was for.

"Are they looking for cancer in my brain?"
"Am I going to die?"

"Why are my friends all at Monash? and I am here? Do they not like me now?".
Friends are SO important in times like this.
I had no response.

Our beautiful BJ died almost a year ago from brain cancer and it will always be on her mind.

This is a child (my child) that returned from hospital cancer free to then learn BJ had passed away.
She has always felt so guilty that he did not survive and now they are looking for something similar in her.

Tonight a massive family discussion occurred on the spur of the moment.
Tom returned from a playdate to find us home and was very distant.

He suddenly burst into tears for no apparent reason.

We "opened up the floor" to why we had been away and what the scan will be for.

Amelia and I had already discussed that Tom may have placed a "protective guard" up for the hurt of last year, due to our discussions on facetime the day before.

He appeared to know and wanted to know nothing.

Amelia contained her fear and continued to show resilience by explaining to Tom that there may be cancer in her brain and that will be really scary.

I was amazed at how she handled the discussion.
She JUST WANTED him to be ok she said later.

As his emotions flowed and Amelia showed amazing resilience, we assured them both, it will probably be nothing to do with cancer.

The love and affection and openness tonight will stay with me forever.

Amelia sat there in silence while possible cancer in her brain was discussed and said
"Tom please talk to me about it. I will answer and talk".

We said to them both that everyone in this room is the immediate.
TALK.
DISCUSS.
HUG.
CRY.
No explanation needed.
(we may have mentioned a few others to ask for honesty).



BUT
If there is cancer detected in the coming weeks, heads will roll.

LITERALLY.

Our Oncology doctor is fighting Amelia's symptoms and this brain scan.
He does not feel it is needed.

Thankfully our original team (that missed the ovarian cancer) is pushing for it.

I have also made it clear that an MRI SHOULD have been booked for the chest, abdomen and pelvic area.
Oncology were never happy with an ultrasound or xray for those areas because of the radiation for her Ataxia Telengiectasia.
They will only approve the brain after being pushed.
(MRI will not affect her A-T. They should just approve it).

I have made it TOTALLY clear today at the hospital of the mistakes made in the past and what I feel right now.

SHE WILL NOT DIE UNDER ME.

Sorry but that is how I feel right now.

Oncology have not responded my calls or emails.
They will not accept her symptoms within hospital.

Today I was told that the oncology department does not believe it is cancer again.

If it is, his head will f"n roll.

I REPEAT F'N ROLL.

If it is anywhere, they have failed.

Amelia is living on anti-nausea meds.....
To us it is a symptom.

SHE WILL NOT DIE ON MY F'N WATCH.

I have been given the roll of full time carer on no pay.

THIS IS MY JOB.

Fingers crossed for Friday.

But then I will continue for other areas.

It is somewhere.

xxx