The latest part 1

Hello dear friends,

I am going to try and write what should be many blogs, in one.
No Internet connection and tiredness have accumulated into one big one tonight.

Since January, Amelia has been lacking in energy and experiencing one basic symptom of UTI.
Many times I have told friends and family "She just does not look right".
Because the one symptom was also the only symptom last year, everyone treated it as a UTI with antibiotics.
Amelia experienced approximately 6 UTI's post surgery last year.

Her face recently became swollen, with red marks under her eyes and she intergrated between sad, irritable and happy.
A UTI is like mastitis (for those that have ever experienced it while breastfeeding).
It is a "flu like affect" and responds just as quickly to antibiotics as it appears.

Amelia was not getting 100% better from the medication, but the symptom kept disappearing briefly.

Now I have to confess to a major mistake on my behalf.
Due to Amelia's PTSD symptoms, I treated it as the same as last year.

No tests.

She begged me not to humiliate her again for a test.

I agreed and should not have.

I forced Amelia to have a test in early May 2017.
It came back with high glucose in the urine.

"Your GP is not concerned about that" our local sister said.

Well, I was.
I already have a Type 1 Diabetic at home.

When Amelia got home from school, I finger pricked her with Tom's monitor.
9.2
(between 4-8 is normal).
Almost 3 hours after eating.
NOT GOOD.

A few days later we submitted "full bloods" from order by RCH.
(only after I called them with my concerns).

Every Thursday, I deliver medications to the elderly and disabled for 2 hours.
The Thursday after Amelia's blood test, I delivered medications to the doctors surgery we have frequented for 10+ years.
A GP we rarely see.....
One we actually avoid in appointments.....
The ONLY one we could get into to do full bloods on this day.

He called me into his office while I was working to express concern about Amelia's high glucose/sugar level in her blood and her exceptionally high Liver function count.
NO ONE has ever expressed concern at this surgery or RCH.
For some stupid reason I instantly thought of the 8mm lesion on Amelia's Liver that they "were keeping an eye on".
He was the one to address the concern of high liver levels and I have now obviously changed my mind about him.
I look at the liver counts. All 3 are at least 10 times the normal level.

Last years Ovarian Tumour has obviously had a profound affect on me and how it blindsided us.
(More to come about this later)
Now I think I am paranoid and expecting the worst with each new abnormality.

By the time I arrived back at the chemist, I was a blubbering mess.
Liver Cancer?

My more recent blogs on here obviously point at my concern and worry about her decline.
I have not been thinking 100% obviously lately in my concern.
No one answering my emails and my calls of concern at RCH.

After what Scott and I thought was a promise of immediate investigation on the Friday, from RCH, we heard nothing all weekend.

I was fortunate to have an appointment with a Paediatrition from the same department at RCH at Amelia's school on the Monday.

What I can only assume is the affect of last years "sudden" cancer and my local GP's concern on the matter being "urgent", this poor woman got a very neurotic and paranoid mother in an appointment 90 minutes late.
Some had already seen me after I had sat in the toilets sobbing, trying to expel my fear leading up to this appointment.

The paed left the room on numerous occasions, to make phone calls,  after I presented her with printed version of the recent blood test results.
She called Amelia in and Amelia instantly liked her demeanor, until the doctor asked for an immediate urine test.
At this point Amelia started up her electric wheelchair and announced firmly "I am going now".

(At least we are correctly teaching her how to respond to emotions!).

Great.
This is going to be awesome to get, I thought.

Amelia screamed the place down and called out for anyone she loves and adores as I simply tried to catch her urine.
You would think I was murdering her.

This paediatrition rang late that night to request a full blood test again the following morning.
No reason why.

At 8am the following morning, she rings to change the plans.
"Actually, can you please bring her into emergency ASAP. I have a team of doctors waiting for her".

Liver cancer is front of my mind.

I started crying and explained to both kids what was going to happen.

Tom starts sobbing that it is his "first day of Naplan and I need to be around to support him this week".
I now realise he was just putting a barrier around himself to protect the heartache from last time.

Amelia sobbed and I saw the fear of the unknown.

The machines, operations, canula's and doctors speaking about her "differences".

I ran to my neighbours without thinking.
Scott had already left for work and I needed to get Tom to school.
My neighbour offered to take hi, but I knew immediately I needed to calm Tom down and reassure him all was going to be ok on the way to school ("yeah you said that last time, and she had cancer" is his reaction).

Scott spoke to him on speaker and explained the 2 of them would get through this at home together.
No staying at grandparents.
Together.
So he would know what was happening this time.
That calmed him.

As Tom got out of the car, he had tears streaming down his face.
"I am going to go and talk to my friends mum" he said.
"Perfect. Also talk to Miss........." I said.
People who went through it with him last year are surely going to support him this year.

I rang his school on the way home and explained the situation.
I needed them to know that he was very emotional and vulnerable right now.
After past experience, I knew he would be surrounded by care.
(To hear at a later date that a staff member on this page read of our most recent scenario while on holiday in America, and chose to immediately message Tom's teacher........just made me crumble.
I need this help to look after him. We all need to keep him emotionally stable and talking when this stuff happens. It is the people and stuff to remember always ).

When I got home, my neighbour was adamant that she was cancelling work for the day and coming to emergency with us (1 hour away).
"How will you get home?" I asked her.
"I will work it out" and then she said words that make me not refuse.

At 11:30am we arrived at RCH and were moved almost immediately into a little emergency room with a glass door.
The same type of room the other 2 times.

Doctors and nurses come and go and do not give you any indication of what they are doing or about the test results that are returning to their computer screen.
Amelia is always anxious in this situation and my neighbour proved to be a godsend!
Even though she did not know how she would get home!
She kept Amelia calm.

Suddenly 3 people came in and announced they were from the "Diabetes Team".
"Amelia has diabetes and we will be starting her on insulin tonight".
I looked at them in shock.
They explained her blood test points towards diabetes.

I go into panic.
I already have a Type 1 at home.
For 3+ years it has been a joke that "at least Amelia does not have it".
Amelia has a needle phobia and is an incredibly fussy eater.

I tell my neighbour (lets call her Mardi) that I have to leave the room briefly.
I know she will look after Amelia extremely well.
I ring Scott.
I ring our paed from school.
I demand the blood test results from emergency.

She cannot have Diabetes.
She will not cope!

The liver function tests have risen yet again, but the glucose in urine and blood is still also high.

The paed comes in and with her beautiful calm demeanor and we discuss Amelia's "complex" disease of A-T.
I explain my concern of them not looking at the "whole child" and all of the complexities that A-T brings.
Don't put her straight into the bag of diabetes, until we look at everything in that blood test that may be rising the levels of sugar in blood and urine.

The diabetes teams returns and I put Scott on speaker phone.
Amelia has been stolen by another school parent staying at the hospital (so incredibly grateful).

The diabetes team is now headed by a very forceful and outspoken endocrinologist.
Scott, Mardi and I listen to what she has to say.
The evidence is endless that Amelia has diabetes.

Scott (at home) and me at the hospital, quietly crumble about what she is saying.

How will we cope?
She already has so much happening.

They point out genetics and that it could not be stopped.

Food is her only "outlet" in what is already a difficult life.
How can we possibly take away her "ONLY" outlet.

Then suddenly another voice speaks on my phone.
Scott had already asked numerous questions.
Scott had never warned any us of who was sitting next to him.....

"Hello....... My name is Tommy".
"Why are you putting her on syringes?
Put her on pens, like me."
"And also....... why put her on lantus for long acting?
If she is just starting out, it is really hurting me after starting it.
Put her on levemir and gradually move her to lantus. It will ease her into it.
She is only at 9 in her finger prick readings. Why diagnose her so fast?
Can I come into the hospital and help her through this?".

And every single person in the room lost their professionalism.

They all leant forward and grabbed their heart and quietly sighed.

A little voice that sounded so incredibly tiny (even to me) made such a difference to her overall treatment.

A little voice that has reportedly been so spoken about now, it has been noted for future patients.

I was in denial until I heard him.
My son.
My amazing 10 year old son.

More later xxx