Tuesday, 3 July 2012

TAKE 2

So here we go round again...

As you might have suspected or even assumed being that oh, I don't know, they ARE identical twins... (pity the doctors are too scared to make an ass out of themselves because I KNEW I WAS RIGHT!) Austin has now also (finally) been diagnosed with the same condition as Albert.

Langerhan's Cell Histiocytosis or LCH.

The "ear infection" was no infection at all and despite me asking three different doctors if we should be having Austin tested I was repeatedly told that it would be very rare, very unlikely and unnecessary. Go figure huh?

I took Austin to see a private ENT specialist. She didn't know what to make of it.

The pathologist didn't know what to make of it.

I asked again (that's four doctors now) if they thought perhaps Albert's diagnosis was relevant.

The pathologist tested and said, "Thanks for that additional information (which they'd had all along, Albert was examined by this doctor also).  The pathology is consistent with LCH."

I diagnosed my own child.

They didn't listen.

I had to ask FOUR doctors.

I was angry and feeling more than a little self righteous last week...

Then I was sad...

Then I was worried...

Now I am back to frustrated.

The thing is no one really knows much about this disease (I prefer the term disorder, I know it's semantics but disease just makes it sound contagious which it's not).

 So yeah, feeling angry, frustrated, sad, worried...

Not really a great combination of emotions. I am trying to stay positive...

 I am trying to put my faith in the doctors and hospital...

I am trying to put the fear aside and strengthen my heart with love and hope...

But it's hard.

Today we are back at PMH.  Albert is in his second round of chemotherapy.  He is handling it ok at the moment.  Unfortunately, the tumour isn't responding as quickly as we had hoped to the treatment and has only "reduced slightly".

Austin supposedly starts his chemotherapy today.   I say "supposedly" because right now we have been here for an hour and a half and they haven't even decided what blood tests he needs.

I know I've been a needy Facebook friend lately. I owe you my deepest gratitude. Thank you for keeping my boys in your thoughts and prayers.

I know it is helping...

Please keep it up...

And if you can spare an extra thought or prayer can you point it my way...

For patience, you know, so I don't throttle the shit out of the next doctor who won't listen to me? ;)

Please get better darling boys...

5 comments:

Lu Benson said...

It's a bitch that you had to do all the leg work yourself to get the right diagnosis but at least hopefully now fingers will be pulled from asses and all the help you and the boys could possibly want or need will now be forthcoming!!! If not, I would totally be going all mama bear on their asses :( Any chance you can email the specialist in Sweden yourself to see if he has any suggestions or treatment ideas that you can put forward? BIGGEST LOVES to you guys...thinking of you and the boys all the time xx Lu and Doug

Trudie said...

I didn't know about your boy, let alone your boys, I cant imagine what you have been through or are going through....just know that if you need anything, just ask. Huge hugs, love and light, you will all be in my prayers xx

Peg said...

Oh AM, heartbreaking, sending biggest cyber hugs, only wish I lived closer to be of more help.

donna said...

oh honey.. I knew the boys were not well, but I didn't realise how bad it has been. Hopefully you have better luck with the doctors now. I will definately keep you in my thoughts and prayers
D xxx

tiff(threeringcircus) said...

sending all my love and my axe. it's very sharp and very good when you need to go doctor hunting.