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Vicki Dave Molly & Finn
Austin & Albert
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 too 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... Eight long months of breathing difficulties and chest infections... Eight long months of wondering...
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.
Tuesday, 3 July 2012
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...
Tuesday, 20 November 2012
Hellllllllllllllllllllllooooooooo ECHO ECHO ECHO
So, in the immortal worlds of ERII herself, 2012 / 2013 has pretty much turned out to be MY annus horribilis ... BUT there is much to be thankful for and a midst all the challenges and setbacks and meltdowns and struggles we have plodded along and we are getting there.
My darling husband has returned home to work locally after 8 years of FIFO work on the mines. It was all getting just a bit too much stress with having to stay in hospital. His work has been so supportive of us and they offered him an adult apprenticeship as a diesel fitter. It is something he has wanted to do since he was a little boy so a wonderful opportunity... but financially it has been very difficult. The kids love having him home but it has taken a little while for us to find our fit... and a HUGE adjustment for me too... love the guy with my life... but I don't know so much about actually LIVING with him! ;)
Austin and Albert are doing really well with their treatment so far despite a few setbacks along the way... Just a few hospital admissions due to viruses that have seen them have breathing issues and requiring oxygen... oh and not to mention Austin playing Evel Knievel and standing on a little table to reach a light switch, falling and breaking his arm! Arrrgggh!!! Kids are going to send me stark raving mad... bless their cotton socks!
You accept a new level of "ok" when you have kids needing medical attention. We are OK... not brilliant... not fabulous... but we are OK... and those boys are a constant source of inspiration to me. I lamented that they would ever be one of those kids you always hear about with serious illnesses. You know the ones, you hear about them all the time. The ones that always smile despite all they are going through. BUT they have gotten so good at coping and even though they still cry at the finger pricks and blood tests and ports being needled they have gotten so much better. They bounce back as soon as they are done so much quicker... and all the general poking and prodding doesn't bother them hardly at all anymore.
The last blood test did get to me a little. They both have to have finger prick tests done each time. It had been a while since we had to have one though and when we walked into the phlebotomy department both of them sat on their hands (they still ride in a pram... there's a LOT of walking for little legs). Then when the lady said, "Who's going first?" They each pointed to the other and said the other's name in unison. It was so cute but so sad too. Breaks my heart to have to let the ladies hurt them. They handle it better than me though and as soon as we were done they were happy again. Bless.
It is lovely that people keep telling me how strong and amazing I am (and don't get me wrong, I really do appreciate it even if it sort of makes me squirm when people give me a compliment like that) ... but the reality is I am neither... I have had my moments I can tell you... I just prefer not to SHOW you! ;) I guess my strength lies in continuing to get up and keep on plodding. It's easy to wallow in a bit of self pity on occasion .. and for me I actually find it helps... pretending everything is all sweetness and light, sunshine, lollipops and rainbows just ain't me!!! I prefer to confront the tough stuff head on... it knocks me down sometimes and I feel totally defeated... that's just the kinda gal I am! ;) The trick is knowing when and HOW to snap out of it, focus on the positives, set your sights on the task at hand and just get on with it. I am blessed to have that ability even if some days are harder than others. I am hopeless when people be too nice to me... I can be tough when things are hard... but buy me a cup of coffee and give me a sympathetic look and take your chances... I am not generally a "crier"... takes a lot to set me off (especially in public) but jeez I am an ugly crier when I do! ;)
I keep trying to "learn the lesson"... for me I thought it was asking for help. I have been blessed with friends who made that much easier than I could have ever imagined. Well, friends who recognised my need for a helping and hand and offered it BEFORE I had to ask more like. I am so very grateful for them. Unfortunately, both our extended families live too far to be able to help us physically but of course they are our emotional support. If you ever have a friend that faces a battle like ours... don’t wait for them to ask for help. Just do it... BUT find out what they NEED. Don’t help to make yourself feel better. Don’t offer help that isn’t really helpful. Help because it will alleviate some of the burden and give them a lift. They will need help. Even if they are too proud or stubborn to admit it like me.
I HAVE learned to stop "fighting"... to stop getting so wound up in the injustices and inadequacies of the "system". I still get frustrated but I have learned to roll with it a bit better... and that has been a huge accomplishment in itself. I have far more important issues to deal with and my energies need to be directed in the right place. For now we will just keep on plodding... and try to make it look like we are "flowing" with it... sounds so much more at peace don't you think? Flowing is riding the wave... plodding is trudging... just surviving. Yes, I will flow I tell you! Flow! So much more romantic. ;)
Sunday, 28 July 2013
Just cruising along...
Corny post header... but so appropriate.
I know we have many, many supporters out there who are probably waiting with baited breath to hear news of how Austin and Albert are going... and just like the heading says they are doing just that. Cruising along. We have had a few hiccups and unscheduled hospital visits in the past few months... but we are rounding the home bend and heading into the straight now. Officially this round of treatment is finished...
The next month will see them both undergoing scans and x-rays and testing to see where we are at... and I have everything crossed that NEXT month I will be able to share the news we so desperately hope for... in the meantime I just want to say that I am just too damned scared I will jinx them by saying anything more... so please keep them in your hearts and prayers...
Friday, 30 August 2013
We are at “end of treatment” now. I’m still too nervous to utter the phrase “we are done” or “we are finished” or “they are cured”... the reality is relapses can and do happen... but so far the scans “look good”.
It’s an odd feeling. Hard to describe. Nervous. Hopeful. Relieved. Scared. Suspicious. Cynical. Exhausted. Excited. Sceptical. Thankful. Sad. Happy. Elated. Overjoyed. Different. Changed.
A wise theatre nurse gave me some comforting advice the other day...
“Just celebrate the milestone,” she said.
So we will. Our darling boys are here and well and that is all that matters today. We will celebrate and appreciate.
Austin has since had his port removed and Albert will have his removed next week.... though he tells me his is “staying”.
He is done with all the poking and prodding... So am I... Just once more darling boy. For now.
Anne-Marie Cox (Austin & Albert's Mummy)
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