Monday, 14 May 2012

the toughest year of our lives so far...

So life has rushed by at a million miles an hour... or so it seems... and at the same time seems to have stood still.

The big girl turned 10

The little boys turned 3

We’ve been to the circus
We visited the Harry Potter Exhibition in Sydney
We saw Mary Poppins on stage
We’ve been roller skating
We’ve been water sliding
We’ve been to playgroup
We’ve been to speech therapy
We’ve been to the paediatrician
We’ve barbequed with friends
We’ve entertained family
The girls have had tutoring and school
Callie received an Honour Certificate
We’ve celebrated Harmony Day and participated in ANZAC Day ceremonies
We’ve had haircuts
We’ve ridden Thomas the Train in the shopping centre
We’ve had lunch at the park
We’ve seen Lion King under the stars
We’ve finally had the back sliding door repaired
We’ve been grocery shopping... a LOT
We’ve done art and craft, painted and created
We’ve walked the dog
We’ve taken the pets to the vet
We’ve worked
We’ve played
We’ve payed bills
We’ve done chores
We’ve had gastro
Dylan has gone to karate and got a yellow belt
We’ve celebrated Easter
I have been to Darwin to create with Finnabair
I’ve had conjunctivitis
Callie has started netball
We’ve been slammed in the rear bumper by a motorist travelling to close behind
We’ve been to the cinema

We even got a Mother’s Day photo

However, none of this really compares to what we have spent most of our time doing this year...

Albert has had doctors’ appointments, xrays, blood tests, hospital admissions, echocardiograms, ultrasounds, CT scans, general anaesthetics and a MRI guided biopsy.

He has spent 4 days is the Paediatric Intensive Care Unit and been poked and prodded and jabbed more times than I’d care to remember... and he looks to me... with his eyes pleading for help... and my heart breaks as he screams in protest.  

Eight long months it has taken to find some answers...

And as it turns out our darling boy Albert, the baby of the bunch, has Langerhan’s Cell Histiocytosis.

It’s a “good” prognosis they tell us... the best of a bad bunch as it were.

It basically means his immune cells are accumulating where they shouldn’t... namely his chest.

The tumour it has created is putting pressure on his heart and lungs...  Thus explaining the breathing issues he has been having.

Normally, in children, it shows up in the skull and bones... his looks more like the adult version of the condition.

It means he has to undergo a year long course of chemotherapy to reduce the size of the tumour.
He will possibly have surgery at a later date to remove it.

It’s going to be a long, tough year... we are ready... but we are not going to fight... this is not a battle... this thing is just a part of him that needs our attention... it needs a hug like a naughty child needs guidance...  no, we are not going to fight... 

We are going to love our boy better.  

All positive, healing vibes and donations of love gratefully accepted.

Hell, I'll dance naked under the full moon in the rain if it'll help. ;)

Get better darling boy... our hearts depend on it.