Dear Friends,

I am sorry.
I am so, so sorry.

We have experienced so much recently that I know many of you do not know what this life is like, it is probably so negative and overwhelming it is too much to cope with.

I understand that and know everything is relative to each other.
But our and my life can be so too much for others.

Amelia was recently diagnosed with Type 1 Diabetes (on top of Ataxia Telangiectasia and Ovarian Cancer).
For us it has appeared to be not too dramatic due to our son being type 1 already.

Amelia has been an absolute trooper in her management of needles and carbohydrate counting.

Unfortunately she began her morning nausea and vomiting shortly after the Type 1 diagnosis.

Unfortunately for us, this was our only symptom of cancer in her body.

Cancer growing for 2 years for Ovarian cancer in June of last year.

I tried to eliminate new medications as the cause while also notifying the hospital of what was occurring and what I was trying to correct.

Another note about why I can no longer work and we are now registered as "low income".
(This is something that Scott and I never realised would occur with our qualifications).

I am always keeping note of the impression of me as the direct advocate.
It is sad, but the medical professionals always believe their immediate impression is right and the parents are not correct.
I know this is incredibly judgemental on their behalf, but in our case it is always correct.

Amelia has experienced vomiting and nausea for approximately 5 weeks now.
It is generally of a morning, but can continue.

Of stuff it.....
Here is my complaint to the hospital......

My daughter has been a patient at the hospital since 2006.

She was misdiagnosed with mild cerebral palsy in 2007.

After numerous appointments with both............I arrived for an appointment in 2010 explaining that she was getting worse.

After a short stay, Amelia was diagnosed with Ataxia Telangiectasia.

I have many comments about how that diagnosis was interpreted to us as the parents.

Jump to 2016, after once again many appointments, the 2 years of morning vomiting turned to severe abdominal pain and loss of appetite.

Suddenly it was a mass emergency with a 14cm mass in her abdomen (full of 1 litre of fluid) that turned out to be a malignant tumour.

 

How this went unnoticed when I had regularly expressed my concern about her regular vomiting, I have no idea.

We are very lucky that it stayed contained rather than spread to her chest and brain as a malignant germ cell tumour should have.

You have already addressed and apologised for our treatment during our 3 week stay in June 2016.

 

The lack of "cancer support" group services and no after home care was extremely distressing.

 

Amelia's PTSD was also very upsetting for 4 months.

Amelia has since recorded high liver blood levels (in the 500's when it should be 40)

that is apparent in blood tests since August of last year.

 

Very upsetting that no one red flagged that.

 

My local GP noticed a recent one and upon reading previous blood tests it is easy to see the huge climb.

How did you not notice this?

How did her main medical teams at RCH (the ones doing the blood tests) not notice this previously?

In May, Amelia was diagnosed with Type 1 Diabetes and placed on Daily Insulin.

Amelia has now been vomiting and experiencing nausea for 5 weeks.

It is mostly mornings, but sometimes continues throughout the day.

Initially I tried to eliminate new medications.

I contacted RCH( ........ was the consultant while our new doctor was on leave) expressing my concern with the vomiting and loss of appetite.

He told me he would speak to Oncology and get back to me.

After not hearing from him, we arrived at emergency, 6 days later, where the doctor wanted an immediate MRI of the brain.

We waited 2 more days where doctors and nurses witnessed Amelia vomiting and her very small amount of eating.

 

A urine sample was ordered that sat in the bathroom for 5 hours (after telling staff it was there).

It was clear of infection.

We were sent home to come back in 2 days for an MRI under aneasthetic.

The MRI scan was supposedly clear of any abnormalities.

In recovery we were told that the doctors in....... would meet together with oncology to work out a plan.

For the past 5 days, Amelia has experienced nausea and vomiting regularly. I have had to reduce her insulin doses dramatically due to barely eating and am treating her diabetic lows daily.

I have emailed our doctor at .......  on Monday morning as well as this morning communicating that the symptoms are still occurring.

I also let them know that I needed another script for anti nausea medication.

Today a nurse rang from dev med to ask "how Amelia is going?".

I apologise for the aggressive response.

She knew nothing about a supposed meeting to work out a plan.

A second phone call from the nurse said our doctor would like a urine sample and they will call me next week.

I have lost all confidence in this department and their capability in keeping our daughter safe medically.

Amelia is laying on the couch daily (which she never does!) pleading with me to take her back to hospital, a place that she normally experiences severe anxiety about going to.

A plan needs to be formulated to work out why she is this way and at the moment I feel we are not being acknowledged or helped in improving Amelia's current condition.

...............................

I have requested that our previous consultant and oncologist be kept away from me from now on. They have not responded to any pleas for help from me in the last few weeks.

If any new cancer is found I will find them though......
-----------------------


Today we were told we have all new specialists.

They all believe there may be cancer hiding somewhere in Amelia's body.

I am relieved and heartbroken.

--------------------------

Anyone that knows me knows that I do not like to cause trouble.

To hear that all the new specialists believe there may be cancer "hiding" is heartbreaking even though they are finally listening.

-----------------------------

Once again I am questioning why I have been chosen to be this amazing child's mother.
Why am I chosen to be her advocate?

How do I, with so many faults, qualify?!

Amelia asked to listen to this song at bedtime.

She will always be my guiding light.
I may not be the amazing mother that deserved her.....

But I will continue trying to learn and advocate.....

https://youtu.be/slotyA4opnM

Much love to you all.
xxx