Getting Back

Hello Friends,

I am happy.

I know this is a major shock after the previous blog.

It is difficult though being an advocate for a child that you could lose at any moment.

Medical professionals were not listening to my concerns and the concern of waiting for possible new cancer results did their toll on me.
The fact that a common cold can take her away has me always on high alert.

Amelia and I have not been separated for 7+ weeks.
I have caught her projectile vomit, cleaned it off her and the couch and in her very long hair everyday for 7+ weeks.
I have watched her eat only 2 mouthfuls of food every meal time or sipping on apple juice to keep her Type 1 Diabetes within a safe range.

I was beyond angry at the medical profession, for not helping me get her better again.
All my emails and phone calls were not returned.
Unfortunately the kids heard me call them names after one phone call.
They proceeded to tell Scott what    F*#@ D%$#@!    RCH were.
Oops.

Last week we arrived at emergency after 6 vomits in one day, and I finally felt like we were heard.
The doctors that we know so well, looked at Amelia lifeless on the bed, and me 100% exhausted on the seat next to her and finally told me they were going to help us.

We actually had the best stay in hospital yet.

I have also been more assertive and direct towards anyone in my entire lifetime.

"We are not leaving until you find an answer".
"What about this link and this suggestion".
"NO. You are not doing that to her".

Challenge (cancer organisation) and the nurses were all incredibly kind and nurturing.

Amelia was beyond AMAZING with testing that was humiliating and painful.

Scott and Tom and my dad went straight into "the routine".

We have left with a possible diagnosis of Gastroparesis.

I am yet to determine if it was caused by A-T degeneration, T1 diabetes diagnosis or flu and pneumoccal vaccines.

I am not anti vax AT ALL (children not getting these diseases keeps Amelia alive), but T1 and the vaccines occurred 1 week before the vomiting began.

But we have come home happy with a new regime that may be working.

Scott and Tom are happy.
We are possibly getting used to these separations.

Tonight I was nominated to take Tom to his Football awards night (Scott had already done the basketball and football game).

I normally stand in the corner alone in previous years, because I struggle to socialise and talk about anything other than Amelia's and Tom's health issues.

Tonight I did well.
I talked and listened.
I enjoyed being out.
I ventured over to people rather than wait for them to come to me.

It was 1 hour, but 1 hour where I pushed myself to try.

I was so proud to hear about Tom as a footy player but so much MORE proud to hear of him as a nice person on the field.
Helping players up that have fallen, patting team mates on the back and offering praise and where to stand.
(not so much kicking a player that had kicked his friend!).

They spoke like they knew him almost like I do.

These kids and players have been with him for years but I have never let the adults beyond my "guard".
Maybe next year I will attend the parent events more.

I need to get out and socialise more.

Someone very wise recently said "You are losing Amanda".

I realise I am. That is why I have become so weird lately.

I now realise how lost and absorbed I am in each child's health.

I actually do not have a life or an identity anymore.


I have to finish with something about our sweet Amelia though......
In the recent Pandora catalogue she found a charm (amongst 300+) that is a love heart.
Tonight she asked me if we can go and buy it.


It says "YOU ARE SO LOVED".


Thank you for making her feel that way.
xxx

Hello Friends,

Scott has had to communicate the latest medical news on Amelia because I am not doing too well.
(on Amelia's project on Facebook).

I am tired, emotional and have extended many of my limits.

The last 6 weeks, the last 12 months, the last 6.5 years has taken me beyond anything I ever thought I was capable of.
I still doubt myself.

Keeping Amelia upbeat and comfortable without panicking is hard.

How any one person (and I know lots do!) can handle this kind of life, I take everything off to and congratulate you (and everyone knows I am a prude).

Amelia, Tom and Scott are my everything.

I really have no other life besides them.

BUT the battle to keep Amelia safe and alive is everything right now.
All of them has always been my everything.

I have so many things that I am questioning to the doctors regularly.......

The arguments, complaints, online studies and questions of investigations....
(recorded and documented)

Some have acknowledged that they have not thought of that.......
Or jumped to "I am so sorry. I will look into that".....

So many things that have been on the list since the beginning, 6 weeks ago.
Insulin for Type 1 was my first contact.

If it ends up being that for the nausea and vomiting, I may have to kill them.
I say that quite seriously.
The amount of trauma and stress Amelia has experienced, after they were the first dept asked.....

I am so mentally and physically exhausted that I feel like I am going insane.

Now we know that our beautiful Amelia has to endure another aneasthetic.
One where I have to once again hold her hand while she sobs and pleads for me to have it not happen again.......
ME. Only me.

No one experiences that with me.

NO ONE knows the pain and suffering on her PTSD and my heart when she BEGS for it to not happen again.

Especially when it brings no result.

No one knows the pain....

And yet, I and most importantly Amelia, will need to go through it again for the liver biopsy.

What if it is cancer?

It is just not fair.

Our life is fucked and I wish that I and more importantly Amelia had NEVER experienced this pain.
God does not exist if he delivers this kind of pain and suffering.

I probably will not update for a while.
Sick of reporting sad stuff.

I am over it.

xxx

Dear Friends,

My recent posts have been extremely emotional and negative.

It is difficult when the mother is writing.

It is hard not to focus on my own personal emotions, especially when Amelia rarely leaves my side and Tom is never far from me or my thoughts,

Tonight I will write about my amazing children......

Amelia has a smile that always lights up an entire room.

When she laughs, like REALLY, really laughs, it is so contagious that the whole room loses it.
It is one of those laughs where she struggles to breath and no sound comes out.

It is the happiest thing that you could ever, ever see.

I do not recall EVER seeing someone in such a happy state of mind.

If you have been fortunate enough to see it, you will understand what I am talking about.

Amelia can sometimes have the quickest wit in her "one line comments" that it can do the similar....
except the whole room is encased in uncontrollable laughter.
It can be so unpredictable and people have no warning, it can literally blindside you.

I have said many times....
People look at me and say "Did she just say what I think she said?!"

Amelia's empathy is the biggest thing taught.

People and animals.

She reminds you of feelings and lives.

Her sympathy, empathy and compassion is overwhelming.
With everything she travels through, she is always thinking and asking about others.

But in everyday life, with all of this known, we try to stay upbeat and busy.
Shopping, visiting and conversations.

Conversations can be indepth, but we have now moved on from honesty to optimism.

But she is too clever.
She always corrects us and points out the obvious.

Tom is an interesting and technical character.

After living with this for so long, we try to keep up with his current state of mind, but it is difficult.

Tom overwhelmingly adores his sister, worries about his father and I emotionally.
("Do you need a hug mum?" is a daily occurance)

He is a perfectionist with school work and stress of high grades (TOTALLY NOT brought on by us).

Tom is 11.
He wants to be a kid.
He wants to play sport, play with his friends, get out of the house and interact with people.
He knows that he adores Amelia and wants to be part of everything in our family.

Yesterday as Amelia began projectile vomiting with our latest concern, he went out the back and played basketball.
It was the first time it was really apparent that he was ignoring the current situation.

So many times recently, he grabbed the bucket when Scott and I were not nearby.
I walked in to him rubbing her head and consoling her.

Yesterday he showed it is becoming too much.

Yesterday I told Scott we should have had another child for Tom when we had the chance.
I am really regretting not giving Tom a lifelong sibling at this stage.
He will need someone in the future years.

BUT, BUT, BUT,

This post is not about me and my stupid negative thoughts.

This post is about the fact that I gave grown in my belly and given birth to 2 amazing kids that have provided so many with so much thinking on "LIFE".

Recently we meant people that said "We have been reading your blog".

"She is NOT crazy" Scott said pointing at me.

He was only responding to what people may and do think.

I do not have the strength in this battle I have been dealt, but I will find it and will deal it appropriately.

He was speaking about my writings and my inner most thoughts.

Amelia and Tom are amazing on their own.

They will always show their own selves and proves the amazing people they are.

xxx

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

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