THAT performance

Hello dear friends,

I have hassled you a lot recently about Amelia and her choice for the "Talent Show" at school camp.

I feel I need to explain why it has meant so much and been such an emotional event for many close to Amelia.

The words in the song are pleading for guidance.

The words are Amelia pleading for explanation and help to navigate this life she has been dealt
(We have discussed this).

Amelia has steadily increased in anxiety in recent years and never likes to be "centre of attention".
(Why is everyone staring at me?)

Amelia does not like to inconvenience people.
(I need a drink of water, but everyone looks really busy).

She does not like to speak up when she is uncomfortable or unhappy
(It will make them sad or angry).

She has been through SO much in her short life that has frightened her and made her question the quality and unfairness of her own existence
(once again we have discussed this).

This song AND this performance was so much more than a child singing on a microphone.

It was someone standing up to their anxiety to communicate a very personal feeling to some of those that she loves dearly.

It was a little girl saying "Why?"
"Am I doing this right?"
"You are holding my hand"

"I am a survivor".

A little girl pleading to know about her own life and why it is the way it is.

This song has helped her come out the other side of A-T, Ovarian cancer, Type 1 Diabetes and severe anxiety.

Today as staff members tried to convey the emotion in the room, after knowing Amelia for 5+ years, it made me so proud.
To have one staff member, who we all adore greatly, have to leave the room to sob........

This is massive.

I regularly question my ability to be her mother.

Today I was proud to know that I am.

xxx

https://www.facebook.com/groups/ameliasproject/

May 25th 2017

Hello tolerant friends,

So busy here now with needles, finger pricks and carbohydrate counting for two totally different kids.
The effort to keep both kids within a "safe range" is very tiring!

My role as a carer seems to have been taken to a whole new level.
Toileting, dressing, feeding, daily school phone calls, hospital phone calls and my most important role......the emotional health of each child.

Amelia has taken to diabetes in a way that I could never have predicted.
There has never been any tears and she questions her carb intake for every meal.
She requests to know her BSL level and check the insulin dose every single time.
She is asking for full knowledge and as much control as her body allows.

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

Last night we were lucky enough to go out for tea.
Tom has always demanded to go out to the car to do his needle, when his food has arrived, due to noise, distraction and people watching.
Last night as we were traveling in the car, Amelia asked him to "conquer his fear" and just do it at the table with her.
(She may have also said "don't be a scaredy cat and suck it up")
As we sat at the table, Tom quietly did his finger prick and needle.
I was SO proud of him and have thanked Amelia today for encouraging him.

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

Today I have received a rather important phone call about Amelia's medical care.
I cannot speak too much about it, but I have been asked to a meeting to address indescrepencies in previous years.
Advocacy for Amelia's care has become quite serious recently and I have been asked to document and present these issues in where issues were ignored or overlooked and we could have possibly lost her prematurely.
It will be presented to possibly influential people.
Quite big, but I will continue my study of blood test etc.

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

I also have some exciting news..........
Recently I wrote about the ridiculously high prices associated with disability.
The humiliation of approaching charities and organisations to assist with funding for wheelchairs, shower chairs and the like.
Families that already exist on low wages due to the stress and demand of this kind of life.....

I have had a quote for a new manual wheelchair for Amelia since LAST September.
Almost $9,000.
A chair fitted to her inability to keep her head up now, sit without sliding to either side, sit with her legs and feet in a 90 degree angle and sit for hours on end without getting back and buttock (Amelia and Tom would say BUM! and laugh) pain.
After numerous places denied funding, I wrote a blog on here explaining another part of life for a family that has a child with a disability.
The humiliation and pride that diminishes for the parents that cannot provide for their own child.....

Someone that reads this blog contacted a friend.
That friend rang me directly.
They said "I have been sent a link to your blog. We will fund it for your daughter".

I am now able to say that all the paperwork is completed, (Amelia being in hospital put a delay on it), but the manual wheelchair has been ordered!

The person on here AND the organisation would prefer to stay anonymous, but the amount of appreciation and love we have for these people is beyond anything we could describe.
Amelia will soon be sitting in a chair that will not be creating the new diagnosis of scoliosis to get worse.

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

Recently Amelia announced that if Bruno Mars and/or Ed Sheeran were to ever have concerts in Melbourne, she would like to push through her fear of crowds and loud noises to attend.

Of course both had to go on sale within weeks of each other after she spoke!!!!

Bruno Mars went on sale and an awesome friend helped me sit on hold for 1 hour (because I was driving to a prebooked luncheon with Challenge!) before we finally got tickets.

Ed Sheeran goes on sale for 4 days later and my brother and I sit on hold for 3.5 hours to get tickets.
We are all separated, but we can work with that.

ALL Christmas and Birthday presents are now done from close family members for the next 12 months!!!!

Amelia then announces that she may like to finally use her "Make a Wish" to request to meet him.
HUGE!
This is still undecided.

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

Finally, next week, Amelia goes on school camp.

She is incredibly anxious because of the new diabetes diagnosis.

She has not experienced "a low" yet and none of us can convince her that she will not end up in a coma if her level drops lower than normal.
Tom has tried his absolute best to convince her she will "feel it" before it gets to that stage.
The ratio of insulin needles to carbohydrate intake is difficult though.

Amelia is analysing EVERYTHING about this camp.
We have reassured her about phone calls, meetings with the school and us being only 20 minutes away.
Nothing is helping.

But tonight she blew Scott and I away.

She pointed at the Itinerary for the camp.

"Talent Show".

She said "I want to sing a song by myself".

Scott and I instantly think of her anxiety and hate of being "centre of attention".

I want to sing "Dear Life" by Delta Goodrem.

"Can I practice in front of you?"

Please take the time to listen to the words below.
Please imagine what they may mean to a 13 year old that has been through as much as Amelia has been through.

Tonight Scott and I crumbled while wondering where and how this child has been created.

She sends so many messages and communicates so much that is beyond what she appears to be........

https://www.youtube.com/watch?v=9wPnGY5PlZY

xxx

Back to Life

Hello dear friends,

Thank you for listening to my negative rambles over the last few nights.
It has cleansed my mind of everything.

I feel lighter today and have been able to focus on the positives and enjoy a laugh with Scott and the kids.

Amelia is a Warrior Princess.

She has tackled this latest knock with such incredible bravery and grace, it has put me to shame.
Her finger pricks and needles are over and done with before you even have time to blink.
Her Blood Glucose Levels are amazing and she is demanding healthy food after experiencing a high the other night after demanding fish 'n 'chips.
She felt and looked revolting for 16 odd hours and does not want to experience that again.

Tom's levels have also improved a lot as he is doing his best to no longer sneak to the pantry for more food.

Amelia asked Tom to give her a needle for the first time tonight.
He was shaking with anxiety, but he did a marvellous job.

He said "I just love her so much".

WE WILL ALL GET THROUGH THIS LATEST SETBACK.

The only way is up from here and we have already started climbing.

Thank you for your love and concern.

xxx

The latest part 3

As we woke the next morning in hospital , it was like we had never slept.

It was straight into the morning insulin needle before breakfast.

Amelia was an absolute trooper, like she had been the night before.

Scott came in to learn about diabetes from the point of view of Amelia.

(2 different kids and 2 different hospitals teaching).

When he arrived it was already in full swing.
Thank goodness, I had already been downstairs for my heavy dose of coffee!

The dietician spoke in length about diet and carbohydrate servings.
The amount of insulin compared to the amount of carbs she was to consume at each meal.

Amelia showed displeasure across the afternoon until she was ropeable (that is aggressive).

We all asked questions and I could quietly see her life diminishing with each "No. She cannot have that anymore. No I am sorry"

By the time everyone had left, I was left with a very upset child.
Everything she had held dear was now gone.

Every single happiness in the last 6 years,
Every single excitement, was about food.

What else does she have to look forward to?

Her home life is about food only.

No friends come to visit anymore.

No she only has US to make the amazing life now.

(this is absolutely NO criticism on anyone. It is hard keeping constant contact with Amelia).

As we got ready for bed that evening, I saw a child that's life had ended in her own eyes.
They were hollow and sad.
There was no joking or conversation to bring her back.
I myself did not know how we were all going to continue from this latest diagnosis.

Tom kept messaging through his readings to start a competition on readings, but that still did not bring a smile to our faces.

During the late afternoon, our 4 year old friend had been discharged, during our appointments,  and we had been left with a 4 week old baby.
No parent or family member.

The tiny little thing cried and coughed during the whole night.
I vaguely remember a doctor in their room speaking of a twisted oesophagus.

I begged the nurse to let me just hold it and know it was loved.

Then hours later I overheard a doctor speaking of the father on dialysis and the mother having no one else to look after the other children.

My heart shattered for this tiny baby and the love it needed.

It reminded me of when Amelia had colic and Scott would have to go to bed, to get ready for work in the morning, while she was screaming.

I would not leave her.
She was going to scream whether I had her or not.
But at least I had her.
At least she was in my arms, knowing she was loved.

The next morning the onslaught of departments started almost immediately.

They wanted to send us home, that day, because her diabetes levels were doing so well (because it was caught early).

"Settle petal" I almost screamed.
"What about the Liver levels dip-shits?".

"Oh yeah. We will get gastro in to see you" they replied.

("I don't have gastro" Amelia yelled. But apparently gastro looks after Liver).

Gastro comes in and says they are very concerned with Amelia's blood test levels especially after the fact she has already had a tumour.
They knew nothing about it.
They will monitor it.

As the next department looking after us gets ready to walk in, I yell "NUMBER 26. YOU ARE NEXT".

Amelia thinks I am hilarious.
Thank fucking god.
I am about to lose my mind with the amount of departments and information over the last few days!

As I am down at the chemist getting Amelia's new meds, to go home, a loud speaker calls "MED Room 239".

That is the tiny baby's room a-joining ours.
OMG.
That tiny little thing needs CPR.
Amelia has so much empathy she will be hysterical.

I run.
I run so fucking fast.
I am thinking of that tiny thing and Amelia's response.

Amelia is panicked and that tiny baby has 20 ICU people around it.

Eventually we get approval to go home.
I get her packed so quickly, after being assured the baby is alive and being moved to ICU.

But the liver is still a concern.

Two hours later we walk in the door, at home,  at dinner time.
Finger prick monitors and needles for dinner time.

For 2 children.

Scott and I just look at each other losing it in a psychotic laugh!

Liver will continue.

xxx

The latest part 2

As Mardi left the room to collect Amelia, the paediatrition stood in the doorway.

"I am worried about you. She already has so much".

I closed the door on her and said "I just need to be alone for a minute please".

I sat in a chair in this sparse and lonely environment.
I wondered whether I needed to cry or just try to process what will become another new normal.
Amelia is petrified of needles and "eating" is her only outlet, passion and "quality of life".
The discussions of dinners, snacks and lunch is her daily routine.
To limit the items and start carbohydrate counting for her, felt like the end.

How can I still provide her with an amazing life by taking her last happiness off her?

Amelia has had walking, playing, socialising and talking taken away.
Food and its enjoyment was the last thing.

I ended up just staring into space and trying to find a positive to what I believed was our final setback.

When Amelia returned, I explained to her what the doctors had said.
She handled it better than me.

After Mardi's husband drove the entire way just to pick her up, we were moved to a ward.
Initially I was not impressed with the "joined" room, but the 5 year old boy we met across the way was a blessing in disguise.
He was chatty, happy and was full of questions.
Amelia was laughing and I found myself remember my days of teaching this age group.

Overnight was not as easy as he needed medical attention and there was a lot of talking and tears.

On that first night, Amelia's very first insulin dose did not arrive till close to 10pm.
Because we were moved from Emergency so late, the order for insulin needed to be redone and everyone had gone home.
Amelia and my anxiety was only climbing, but this little boy distracted us greatly.

Amelia has a MASSIVE needle phobia and when it did finally arrive, she almost squeezed the life out of my hand. But there were no tears.
The needle was withdrawn and her entire face broke into a smile.
"That didn't really hurt" she said and the relief filled the room.
With a decent meal required after each meal, we did not turn off the lights until late.
Amelia fell asleep quickly and I found myself laying there wondering whether the blankets were like this last year. They felt like sandpaper and scratched my skin whenever I moved.

I also found myself wondering what we have done to cause this much pain and heartache.
How are we all going to cope with the newest battle?

I got no sleep.

xxx

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

No apolgies

Hello dear friends,

I don't want to apologise for last nights post because it was real and what is happening here.
But I also feel I need to explain my upset, frustration and sadness.

When Amelia was diagnosed with CP we were advised of nothing.
I found the department we are still part of at RCH.
I found a physiotherapist and a paediatrition capable of dealing with the supposed CP.
All on my personal computer.

Amelia was misdiagnosed with Cerebral palsy until WE took her to RCH demanding answers for her massive decline.

They gave us the diagnosis of A-T without offering hope and services available to help her.
They never showed us the many organisations around the world that are madly trying to find treatment or a cure for the 1000 kids worldwide that have A-T.

When the cancer last year blindsided us, it is apparent it had been growing for approximately 2 years.
Regular appointments at RCH and they NEVER picked it up.
I can see NOW in the regular blood results where the numbers were climbing.

To receive confirmation that someone was looking into last weeks blood test results and to find out today that was not true, partly confirms my meltdown last night.

I was asked to show the emails of last week to prove someone was supposedly looking into it!!!

I am exhausted from being an advocate, "Staying on top of everyone" and waiting to see what Amelia needs to battle next.

IF I did not question and demand, I wonder on many of the previous occasions what would be the case.

Lets not even mention the fight/s for Tom.

Todays paediatrition just rang.
She sees the results as needing urgent investigation.
Diabetes is the first worry.
Blood test tomorrow.
If high sugars are still evident, into hospital.

Next.......
Look at Liver.

So last night I fell apart because I am only one person.
One person who is over making sure medical teams do their job.

xxx

VERY full on. Don't read if you don't have the emotional energy.

Hello,

I am exhausted.
Beyond exhausted actually.

I currently have a husband and a son in the room behind me trying to work out "how to help me".
I can hear them.

You see, I am sitting here crying my eyes out.
In our study at the computer.

I am over it.
I am over the constant battle to live each day positively, to only get knocked down consistently.

2006 Cerebral Palsy - life will be a battle for her.

2010 Ataxia Telangiectasia - to be told by a room full of doctors "Go home and cherish her. There is no treatment and no cure".

2016 Ovarian Cancer -It is HUGE. Oh lucky we got it all out. Oh dear, it will most possibly return in the lungs and we don't know how we can treat it then. We will do tests every 3 months that will make her scream in pain.

We are all now waiting for abnormal Liver function test results that are SERIOUSLY abnormal.

Today is the 4th day of waiting for someone to communicate something to us.
ANYTHING to us.

I DO NOT SLEEP.
I have not slept since February of this year since "symptoms" began of what we thought to be a UTI. She needs the toilet regularly.

Scott has nightmares all night that I need to wake him up from at the moment.

I lay there thinking.

Tom's anxiety levels seem to be increasing.

Amelia repeatedly says "I hate my life. I can't do this, I can't do that. I hate being like this".

And do not dare mention any concern or console me in front of her, because she has a panic attack that another thing is happening to her for about 24 hours.

Of course she does!
It is her body all of this happens to.

Someone in a support group for A-T recently wrote "Stop all of the drama posts everyone. Live positively".
She suggests letting your child live like any able bodied child and being happy.

I am trying.
I am trying so fucking hard.

But what if a MASSIVE baseball bat keeps coming and doing a full pelt hit at you regularly, when you least expect it?

I have and am losing friends left right and centre....

As we are financially digging the biggest hole....

An hour ago, I just said to Scott, "With all we see and hear about A-T children dying suddenly...I just know I will not cope. She is my everything. How would I continue? I know that I will have to because of Tom, but I don't how someone does that?".

He's reply "I will be there for Tom. I always fall apart ages after you".

WHY does anyone have to go through this?

WHY does anyone have to experience judgement and expectation from others at the same time?

At this very moment, as I struggle through those tears you struggle to see through, WHY do any of us have to travel through this?

I understand that no one knows what I speak of, because they do not live it AND think it 24/7.

But this is how I feel right now.

I am just fucking over it and cannot stop crying.

Good night.

xxx

Love you all too

Cancer Tests Today

Hello dear friends,

I have a beautiful thick, warm white jacket.
It is totally NOT fashionable, but it is cosy and warm.
It makes me feel safe.

For some unknown reason, I was determined to wash it today before heading into Amelia's appointments.

I wore it every single day during Amelia's cancer stay last year.

Today was the next appointment for Amelia's cancer monitoring.
I only found out about it last Wednesday.
Today is Tuesday.

The process requires a painful ultrasound of her abdomen and pelvis, x-ray of her chest and blood test.

She needs a full bladder and is not allowed to eat until the ultrasound part of the day.

In the past 9 months the ultrasound is kindly booked for 8am.
Today it was 2pm.

Amelia has been amazing today.
She did not complain today (only the days leading up to it).
She did not cry and scream during the ultrasound, like she has for the previous four.

They push and press so hard on her operation scar and around it, that it always has me holding her hand and literally crying with her.
All to avoid another X-Ray, something so dangerous in causing cancer with A-T.

Today she was amazing.
"I am a big girl now" she kept repeating.

I also wonder if it was the radiologist.
He was amazing.

He left the room briefly and returned with a proper "doctor".
They looked at her liver and took more photo's.
There was an image like a crater on the moon.

"It may just be a telangiectasia" he said to me.
"There may be previous photo's of it to show it is always there".

I don't remember any reports mentioning it.

I REFUSE to stress about it until the oncologist rings me.

Cancer in the liver would mean we are well and truly fucked.

I will assume it is nothing until I hear anything otherwise.

Then we receive a call about a test that has "high glucose levels" from yesterday.
I already have a Type 1, so I know what that means.

Because of Amelia's recent thirst and more frequent toileting, I asked, yesterday, if I could test her on Tom's monitor. She specifically requested that Tom test her.
He explained the fingers that hurt and where to prick.
He spoke to her calmly and had it all finished in 5 minutes.
Keytones as well.

Tonight they rang and said because of the tests she needs to have a blood test tomorrow morning.

I was trying to talk to them while Amelia overheard and began crying hysterically.
Loudly.
Scott got her organised for bed.
She was tired and needed to moved away from the conversation.

Tom was still eating dinner after finally completing his night time needles.
He looked at me frustrated and pushed his dinner to the side.
"I can't handle her like this. I am going to go and lay down with her in bed".

I can still hear the giggling through the monitor.
The fart noises and mocking.

Tom can be such a handful, but when it comes to Amelia, he is a godsend.

I am sure everything will be fine.

xxx