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.

16 comments:

Anonymous said...

Hey AM,

I had NO IDEA you were dealing with this! Sending all my positivity, heartfelt warmth and hugs to you and your beautiful family. You, my dear, are an amazing Mum, person and soul. Huge, positive hugs and vibes to you from the other side of OZ.

Lynette van Barrelo xxxx

Rebecca Beattie said...

Oh AM I am so sorry to hear of the year past, and the year ahead you have with Albie. I have written and deleted this comment too many times because I can't really find the words to express all my love, hugs and positive thoughts I'm sending you yor family's and especially his way. Thinking of you guys ever so much xxx

donna said...

sending lots of love, hugs and well wishes for you and your gorgeous family AM
Donna xxx

Lauren said...

Oh honey, sending love and hugs to your little man and the rest of your beautiful family. I admire your strength and courage. You are in my thoughts. xx

Libby Morris said...

Hey there AM,
I have noticed you are always there for everyone else, with a sensible ear or silliness to lighten the mood if needed. You are the first to help out in good times and bad. Seems to me it's time to return the favour lol wishing your fam the best though this. Just say the word if ever you need anything.
Much love Lib x

Gayle Price said...

Hi AM, I really didn't get to know you in Darwin, but, I do know I warmed to you straight away...warm, genuinely friendly, enthusiastic, oh, and who couldn't be impressed by your chupa-chupas in the gob skills. You certainly showed no sign of the worry for your little one, well obviously you wouldn't to strangers anyway, but, as a mum, the health and well being of our kids is always paramount, and when something is 'not right' we do all in our power to make it right, so I feel your frustration and anguish. I am sending you positive vibes, I will be thinking of you and your sweet boy and I will be hoping and praying that the amazing world of medicine will do right by you and your beautiful family. xx

Tina said...

AM, Iam sorry your family and your little boy have to go through this, but love will conquer, if love is what it is going to take, all will be ok xx

slywalker (Lesley) said...

Oh I am so sorry to read about the little fellow, I've never heard of that before, it's weird that these days our children seem to be coming down with more and more strange illnesses. Sending strength and hugs your way and the way of all your family to deal with such a tough time, you sound very positive which is I guess, the best way to be, thinking of you....cheers and hugs Lesley

miasmummy said...

Beautiful gorgeous Mumma Anne-Marie, you and your whole family will hopefully feel all my positivity, healing vibes with big lashings of love all the way from across country!! Please keep us updated... Been thinking of you and wondering what has been happening... Lots of love and blessing.... xxxxx

mrich2500 said...

My heart goes out to you & your family...no one ever wants to see their child sick. Will send my most positive thoughts your way!

Tara said...

Sending hugs and best wishes your way AM, so sorry to hear you are going through this with Albert. Xx

Melanie said...

AM - here I am procrastinating on doing Chionia's room which means I need to clean up the spare room first to hide things from her room and looking at my mountain of washing and then the kitchen etc etc and then I read this - I am so so sorry to hear little Alby is battling this but know that he has all the love and thoughts and prayers from a much bigger source from around you guys. You will take it one step at a time and I know he will get better. All my love and prayers - please let me know if I can help in anyway. xxx

Anonymous said...

Wow AM, only May and you've jam-packed it all in already! Last I spoke to you, it was just asthma (so everyone thought) that was causing the problems :(
I know you guys will all deal with this amazingly well - you're an amazing family and with all the support I'm sure you're getting from so many friends too, it's not going to be a lonely journey. Thinking of you all xxxx
Jen, Paul, Paul and Leah

Scrappingdownalane said...

Heck Bin.... I just knew you were dealing with a lot more then you were letting on...

I'm sending you all my love, and the BIGEST HUGs, your in my heart and lots of healing vibes are wafting across Australia from EAST to WEST just for you and your beautiful family. Stay Strong!!! That little man will grow up strong & beat this. Albert is just like his mummy full of guts & strength... you know were I am if I can help you at any time. If only to let off steam & to scream at OK!!! Chin up!!! xox

Heather Jacob said...

Hi Ann-Marie reading this brings back memories to 1990 when our son Mark had cancer at 14 years of age .... I am sending you big hugz and I agree it is not a fight it is about flowing with it as difficult as it is .... no one knows except those who have been there .... bless you and you will get through this there is a light at the end of the tunnel .... take care xoxox

Deb G said...

Hey AM!!! Wow lady!!! I had no idea you have been going through so much. I knew your little man..(men) were having a few problems..but whoa!!.So.. my love and best wishes and prayers are yours....every little bit counts.
Hugs babexxooDeb Godleyxxoo