Cannot Sleep

Hello.

I cannot sleep.

I currently have a blog that is ongoing because I do not have "enough" information to publish it just yet.
It is not completed to give it enough justification.

Tonight I woke with a horrifying realisation on what is my reality.

I am like a bull at the gate at the moment (sorry if that is not a proper phrase. Scott always tells me that I make up my own phrases!).

Tonight I have awoken in the middle of the night remembering that I have a child that is slowly dying.
I don't know why, but I have.

While preparing for the local council's "hard rubbish" pick up, I have sorted through photo's of the past few decades.
Many of these photo's feature Amelia walking, running and playing next to me or others.

Today I quickly tossed them aside.
But it has really resonated with me tonight.
Amelia refuses to look at them.

I now feed Amelia, toilet her, shower her and have great difficulty understanding her.

But back then?
She was happy, social, friendly and attempted to tackle everything.
She had SO many friends and had a massive social calender.

Now I battle with her anxiety, anger and sadness.

I battle with my own anxiety and depression!

And then there is her brother who is 3 years younger.

What is going to become of him?
When she passes, how is that going to affect him?
They absolutely adore each other and I worry about the life he will lead afterwards.
More cancer scares (which is highly likely) or illnesses that will affect his education and own anxiety.

Tom has the capabilities to "make something" wonderful of himself.
Whether it be entrepreneurial, or just an amazing, caring human being....
I don't really care.

I just do not want him to spiral into mental illness or addiction.

Normal life worries for any parent, hey?

xxx

RAW

I am pissed.

I am really fucking pissed off.

(Forward note before you continue reading...... I am fine.
This is all Internal and not being expressed to adored children and husband).


How the hell did Scott and I deserve this life??

We are no longer a loving couple.
We are partners in medical care and exhaustion only.

Amelia has gone so downhill since the operation in so many ways.
We have to do EVERYTHING for her now and it is shit.

In what possible way did we deserve to receive this much pain and pure utter exhaustion in life?

How is it fair that you now have to ask your child to repeat herself at least 3 TIMES so you can try with all your might to understand her?

The A-T would have been enough...
But NO.
Lets throw in cancer as well.........
and Type 1 Diabetes.

Lets give a couple so much worry and heartache and see if we can break them.

I am OVER IT.
Like seriously over it.

The threat of their being more cancer in the future......
More hospital stays....
Longer hospital stays....

Has seriously pissed me off.

What did we do and at what stage to create this future?
This life?

Amelia and I live in each others pocket, so to speak.
Because she has such high anxiety now, she will not leave us for respite.

Scott and I have NO time together.
When the beautiful Kate offers it.....
We SLEEP.

Like seriously?!

The amount of areas in our lives that have changed (meaning Scott and I) because of both Amelia's and Tom's diagnosis's is HUGE.
Some of it is good and some of it is bad.

And then there is Tom's life.
I cannot even possibly list all the ways his life has been affected.
I SO SO SO hope he continues to be the amazing kid that he is already....
But still?!?!
What kid has to help feed his sister and clean her from age 5?!

And Amelia?????
The worst list.
The absolute worst possible fucking list.

I cannot even begin to name what she has said to me and what I have seen her endure.

She is intellectually unaffected by all this.
How would you like strangers wiping your bum?

Who would grant such a miserable, horrible life to such a beautiful, caring child?


I am over it.

I want a 13 year old daughter that goes to the local High School and is having trouble socially.

I don't want a child that is 13 and has to have someone wipe her on the toilet.

I don't want her screaming at me that she wants "a normal life" anymore.

I do not want a child that I know is going to die anytime.... anymore.

It is almost 6 years since the initial diagnosis.
The fact that it was not the end of "horrific news" is ........
well indescribable.

This week I received a phone call from one of the friends lost in the last few years.
It was nasty and she was in "attack mode".
I was proud of myself for choosing to just hang up, rather than attack her back.

No one.
Absolutely NO ONE knows how we live and what we go through.

This is when Scott and I first met.
1990.

How is it fair that we now cannot have a loving relationship?

Why is it fair that we live day to day for our children's health issues?

At what stage did we deserve to be dealt this much pain?

I will continue with this life.

But I will always question why.

After her funeral, I will look back on this post and want this day again.

To have Amelia is everything.

I must remember that.

xxx

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

Our Hell Part 4

Driving home was very surreal.

I was driving Amelia the 1 hour distance for a few days away from the hospital.
She was not better than when I took her in there.
They had not "fixed" her.
The fatigue, vomiting and pain was worse.
The mental damage was the most difficult to help her with.
Amelia was sad.
Very sad.
The personality that we have always known and loved had been consumed by fear.
My hope was that this was only temporary.

The whole drive I was questioning myself about whether this was a good idea.
Amelia really struggled to sit in the passenger seat comfortably.
She barely talked.
I just kept telling myself......
The animals.
They will make her happy.
Tom's Birthday.
She will be happy to be home with him when he wakes up on the Sunday morning.

Unfortunately this was not the case.
From the moment we got home, Amelia got worse.

Amelia spent the weekend lying on the couch.
She was unable to sit upright.
For a child that has refused any daytime "naps" since she was two years old, she spent a lot of the weekend sleeping.
Her interest in food and drink was minimal.

On the first night she woke up crying.
She was running a fever, but was shaking uncontrollably, saying how cold she was.
This would continue many times over the weekend.

It was SO incredibly hard to watch.

It was SO hard as a mum to know that she had something inside of her that was making her feel this way.
I kept reassuring myself that they were taking it out in a few days, but then I began worrying, what if it burst at home?

I rang the hospital on the second day home and they did not appear concerned.
With the acceptance that they are the experts, I told myself everything was fine.

Our front door became a revolving one.
Friends and family came to give her a kiss, give her a hug and kindly give us a meal.
Amelia struggled to converse with some.

On the Sunday, it was Tom's 10th Birthday.
We tried to keep it as normal as possible.
With Amelia still laying on the couch and becoming worse, I organised for friends to come and sit with her so Tom could still play footy and have his birthday party.

Tom played in his footy team in the morning and it was very emotional to see the extent the players, coaches and parents went to in support of Tom.
Everyone knew the worry of the previous fortnight and how emotional Tom was about having our family separated.
The players were a pink stripe on the protective helmets and pink face paint.
Friends, family and the players parents wore pink and came to show their support.

When Scott and I were standing beside the ground on our own, I said to him
"I think I am going to have to take her back before Tuesday".

"I know" he said.

After the game we returned home and I rang the hospital again.
I spoke to one of our doctors and explained what she had been like.
We ended up deciding that it was best to take her back in to be "checked" and we may as well stay for Tuesdays operation.

"Can I go to my son's birthday party first please?" I asked her.
"Yes" she responded. "But come straight after".

I packed our suitcase before taking Tom, with Scott, to meet his friends.

The birthday party was fantastic and I tried to just focus on Tom and his happiness.

When we got home, we put Amelia and our bags in the car.
The emotions were raw, because we all knew that we would not be home now until after Amelia had recovered from the operation.

Scott and I had been told the risks of the operation.
We needed to get through Tuesday first before we began worrying about the test results being cancer and what that would entail.

As we all hugged and kissed goodbye, Tom started begging to come with us.
He climbed into the passenger seat and wrapped Amelia up in the tightest hug and would not let go.
Watching Scott pull him off her was one of the most emotional things I have ever witnessed.

As Scott held Tom while he sobbed at home, Amelia cried the whole 1 hour drive back to the hospital.

xxx

Our Hell Part 3

"I don't like you" Amelia said through gritted teeth.

She was saying it to the surgeon that would be removing the "mass".

The surgeon had been explaining to my parents and I what she knew from the MRI of Amelia's abdomen.
She was explaining to all of us what her plans were in the surgery.

Amelia had requested that all discussions with doctors be held in front of her.
This was the first sign that it was no longer a good idea.

Amelia is never nasty and has never told someone she doesn't like them.
The enormity of this situation was too much for her to process, especially when a doctor is explaining what would happen after she was cut open.
Amelia was overwhelmed and becoming distressed.
We had to start remembering that she is only 13 years old.

We entered another room to be told that the mass needed to be removed whole.
If it was malignant, there was to be "no spillage", nothing left behind.
The cut would be substantial due to the size of the mass and the fact it needed to not be damaged upon it's removal.
It was to just be lifted out.

At this stage at least one ovary would also be taken.
The surgeon wanted to avoid taking the second one, if it showed no sign of being joined or affected.
A child of Amelia's age needs at least one ovary to assist with overall growth and development.
Hormones, female growth and healthy development during the teenage years.
If she did need to take the second ovary, Amelia would need to take HRT for the rest of her life.

The appendix was going to be removed.
The MRI showed it was damaged from the mass.
It was either joined, affected or had just been pushed so hard by this foreign entity.
It was also causing the pain Amelia complained of in her right side.

Biopsies would be taken of all surrounding organs and "a wash" conducted.
The wash would identify any "foreign cells" floating around.

They were going to try and identify, if it was cancer, where it had spread, if anywhere.

Nothing will be known till after the surgery.

There were mixed opinions between Gynocology and Oncology about how long it would take to find out whether the mass was malignant and, if it was, if it had spread.
Gynocology said they have had patients wait up to two weeks for results.
Oncology said three days.

On the sixth day of admission, it was decided we should go home until the operation.
It was five days until they would operate.
Amelia was so depressed and anxious, they thought a few days leave may pick up her spirits.
It was Tom's 10th birthday on the third day and it was hard to imagine us not being at home to help him celebrate reaching double digits.
I also knew it was important for Tom's emotional wellbeing that we be there for him on the day.

A final "discussion" was had outside Amelia's room before we left.
Through the door, I could see Amelia becoming distressed.
I pointed this out to our doctors and said "I need help. I need help getting her through this", but all they could offer us was more tablets.

As I walked back into her room, I pulled up a chair next to her, getting ready to calm her down, yet again.

Amelia was at a stage where she was SO angry and SO frightened.....
I was never going to be successful.

I held her hands and cried many tears as she repeatedly said......
"Why me? Isn't my A-T enough?".

Finally she stopped and said "Why are you crying?"
"Because I am scared" I said.
She stared at me for a while and finally said "Me too. But you are not the one that has to have the operation".
"No. I am not. But you are a part of me, so the pain and worry and being SO incredibly frightened.....I feel too. I am your mum and I have to look after you before, during and after all this. I am hurting watching this happen to you".

We both cried for a long time before I attempted to get her home for a few days.

Our Hell Part 2

As Amelia lay lifeless on the hospital bed from the happy gas, we had to ask.......

"Could it be Cancer?"

"It could be anything. You need to prepare yourselves for anything" the doctor said.
"We need to get you a bed upstairs on a ward".

Scott and I went out the front so Scott could make the long trip home.
Only one parent was allowed to stay.

He had brought his motorbike in and I was worried about him getting home safely.

He was shaking.
Uncontrollably shaking.

"Ring me when you get home please".
I was nervous that he may not make it.
I made him message me when he got home safely.

Back in the hospital room, Amelia was relaxed from the happy gas but anxious.
She wanted to go home.
I started wondering when we would ever get home.

At 1:30am they moved us up to a ward.
The Kelpie ward.
It was for adolescents.
It was spacious and so different from our last stay in December 2010.
This time we were by ourselves.

We slept a few hours before the noise outside our room woke us up.
It was morning time and breakfast was being served and doctors were starting to do their rounds.
A nurse explained the facilities and after a shower, I headed downstairs for what would be the first of many coffees at the café.
Amelia was content watching television.

Gynocology was the first department to come and visit our room.
Two middle aged ladies were very understanding of our concern and our need to be kept "up to date" with anything and everything they were thinking, researching and considering when it came to Amelia.
During the A-T diagnosis in 2010, doctors did not speak to us about what they were "thinking".
It made the actual day of diagnosis so much harder.
We wanted to move with them in their findings, rather than have it smacked into our faces at the end.

On this first day, they explained that the ultrasound showed a high probability of it being joined to at least one ovary.
They said that Amelia would be undergoing more blood tests and an MRI to try and further understand what this "mass" was inside of her.

Now this is where I get a bit lost.
I cannot remember the exact order of words, procedures or what I even did in that first week.

Many parents understand the "auto pilot" mechanism.
Where life suddenly because so stressful, so worrying and there is so much to understand and listen to.......
You shut down a huge part of your brain.
Your life becomes very mechanical, but also extremely focused on the most immediate and the most important.
For me, that was Amelia first and foremost.

Conversing with doctors, asking questions and looking to the next procedure.
It was looking after Amelia's normal daily necessities like showering, toileting and eating.
It was trying to keep her calm (which was near impossible sometimes), distracting her and trying to help her to stop worrying.
She was not sleeping.
She wanted to talk, debrief and talk about her worries at all hours of the night.
She did not want me to leave the room.

I remember Tom crying on FaceTime when he and Amelia saw each other for the first time since we were admitted.
Amelia had the happiest grin from ear to ear to see someone she adores so much and poor Tom just started erratically wiping his eyes, trying to hide it.
Our 10 year old was displaying the fear we were all feeling.
I looked at my dad standing behind him crying.

We were all petrified of what this fucking mass was inside of Amelia.

Scott went to work, looked after the pets, went to visit Tom AND came in to see us.
He was exhausted.

I remember them using "happy gas" to put a canula in Amelia's arm.
I remember the doctors madly researching A-T.

I remember the battle for them to put her under a GA for the MRI of the abdomen area and not force her to try it without (A-T tremors and her hysteria were not going to help her lay totally still).

I remember her going under anaesthetic for the MRI.

I remember her sobbing as they wheeled her into theatre.

I had a friend there and when she had to leave, I remember then walking out of the hospital and feeling myself start shaking.
As I leaned against a tree for support as my legs began to give way........
I finally began crying.

After 90 minutes, I received the call to go to recovery.
Auto pilot kicked in again.

My dad rings while I am making my way there.
He has gastro and can't have Tom.
Ring Scott and he goes home to collect him from school.

Scott and Tom together at home now.
Amelia and I together in hospital.

The next day Oncology arrived at our room and introduced themselves.

"We have joined the team looking after Amelia now".

Ok.
Shit has just got real now.

We are in serious trouble.

xxx

My beautiful friend Meredith

Before I write Part 2 of what has been our battle in the last few weeks, I need to write about something that is immediate.

Three days before I took Amelia to the Emergency Department at RCH, I received a message from a very dear friend of fine.

I may even say one of my best friend's.

It said that her 6 year olds brain cancer had spread to his spine.
The doctor had given them a prognosis of a few weeks.

I sobbed.
I sobbed uncontrollably.
I sobbed while she messaged me about her plans for him at the end.
I sobbed at the idea that she wanted to build a memorial garden at their home, to scatter his ashes.
She did not see my tears, only my words of support and love.

If I rewind, I jokingly called Meredith Hill "my stalker".

We had both been on the Parent Committee at school together.
We didn't really know each other.

After Amelia was diagnosed with Ataxia Telangiectasia.....
After we had been told to go home and "cherish" Amelia, I chose to drop her at school after the start of school and pick her up before home time.
I was not in the frame of mind to talk or explain.
It was 2010.

BUT she would catch me.
She would hug me.
She had absolutely NO IDEA what was happening to us.

Then she read about it when it was in The Herald Sun, our state wide paper.
She became "a friend" very quickly.
She was very different from the others though.
Meredith didn't want to DO anything like fundraise.......
She just wanted to be there for me and put a smile on Scott, Tom and Amelia and my faces.

She is still here with us.
Many others are not.

In the last 5.5 years, she has organised for flowers to be delivered to Amelia at school for her birthday.
She has seen Melbourne Demon Merchandise available at a market and totally smothered the stall for Tom.
She has sent Tom messages of support and told hime how "awesome" he is.
Meredith has arrived on our doorstep to give Tom a hug or Amelia some encouragement with her disease.

When I was suffering from severe depression, Meredith was the one to BANG on my front door repeatedly until I answered.
She was the one who wrote on Amelia's Project Page on Facebook to write about how inspirational I am to help pull me out of it.....

SHE IS A TRUE FRIEND.

Meredith is not after gossip or accolades for what she has done.
IT IS HER.

People call me strong, but this woman is an epitome of that word.

When Amelia was admitted to hospital recently, you all saw her comments and her wisdom.

She NEW what was happening to her son and so did I.
But she still wrote about her love and support.
She still spoke of "my girl" and "my boy".

We almost got into an argument on line when I said
"STOP WORRYING ABOUT US. FOCUS ON YOURS.

But that is not Meredith.
She genuinely cares for others.

BJ was diagnosed with an aggressive brain tumour in February.
Normal child to vomiting child.
As easy as that.

After 4 months of not leaving Benjamin's side.
Four months after being diagnosed with an aggressive brain cancer that then spread down his spine.

After 4 months of feeding him through a peg, sitting beside him through horrendous operations.
After 4 months of being EVERYTHING to him....
After him yelling at her and not talking to anyone.

He passed away this morning.........
In her arms.
The optimal place.

He was 6 years old.

After a text message this morning, we are all shattered.

Meredith, my whole family fell apart.

We LOVE you and feel your heartache.

YOU are our hero.
You are the most amazing person to enter our lives.

But you were never to lose a child.
When I met you.... YOU had 3 healthy children.
You were supporting us to lose OURS.

Tom is currently writing you a letter to say what he feels.
It will show you the kind of person you are from a 10 year old.

You have lost a child.
The worst possible thing to EVER happen in life.

You are everything that we would want to be in the same situation.

We will be someday and you will be the person we remember and look up to.

Love you forever and always
xxx

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