Browsing Archive: August, 2009

31st August

Posted by Peta Long on Monday, August 31, 2009, In : Charlotte Update 

A pleasant and quiet day was had by all. Charlie and Dallas (her mate in the bed across) played soccer in their room, a few patients left today so there was heaps of room. Before Charlie could think about it she had regained her confidence and was walking around all by herself laughing and carrying on. It was great to have our old Charlie back.

It's a shame they have to go back in to get more tumor out. It does look like it may be this Thursday when the operation will happen.

We were notifie...


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*Sunday 30 August, 2009 (DAY 20) - 8th Kids Cancer Update Lectures at Sydney Children's Hospital

Posted by Peta Long on Monday, August 31, 2009, In : Charlotte Update 

*Today I realised that I am a parent of a child with cancer. When I talk about Charlotte's tumour it is just a clinical lump in her head. But it's CANCER! It took all the self-control in the world not to burst into tears and sob as I sat in the lecture theatre today. But, there was just too much to learn about the road ahead for Charlie and the road ahead for Rod and I. We can not cure her, we can not take the tumour out, we can't even spare her the physical pain, but we can be the strongest...


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A breif retrospective.

Posted by Peta Long on Sunday, August 30, 2009, In : Messages from Bec and Rod 

Wow so much has happened since the pediatrition said "go home pack some comfortable clothes and meet me at the Sydney Children’s Hospital I will have an neurological team waiting there!" We were driving in and Beck asked me if I was ok at that point I burst into tears and said no this is really bad. It is very difficult to drive whilst driving so I had to pull it together. The poor little thing was poked prodded jabbed for the next 6 hrs meeting god only knows how many doctors.

 

That first...


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*Friday 28 August, 2009** (DAY 18) – Too Much Information…finally!*

Posted by Peta Long on Friday, August 28, 2009, In : Charlotte Update 

**Today has been one of those days when too much information is dangerous, tiring, confronting, devastating, exhausting, upsetting…..a relief!

The morning began with Charlotte’s screams at 4.30am, after she was woken for her 4am obs. She remained awake, despite all efforts by the lovely Sui Wan (Nurse), to get her back to sleep - without having to wake me up. When I woke it was a cacophony of sound in C1 North with the other patients joining Charlotte’s dolcett tones. All jokes aside I...


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Thursday 27th August

Posted by Peta Long on Thursday, August 27, 2009, In : Charlotte Update 

Yes we are still waiting and trying to resist the frustration of no results, instead we are enjoying the time we have with Charlotte who has recovered exceptionally well. All the doctors and nurses are amazed with her progress.

 

We had a visit from Charlie's ICU nurse two days ago who was absolutely amazed to see her recovery. He said "we were given instructions to prepare for Charlotte's arrival from the operating table and were also told it is very possible she may not make it to the ICU,...


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*Wednesday 26 August, 2009 (DAY 16) - EVENING EDITION*

Posted by Peta Long on Wednesday, August 26, 2009, In : Charlotte Update 

I think Rod and I are beginning to feel fatigue set in and are quite anxious about Charlotte's results. NO NEWS STILL!!

 

On a lighter note, Charlie's physio session went really well this morning and she enjoyed being somewhere new. She also had her central line removed, which was a slightly painful and distressing procedure for her. However, the result is a line/monitor free existence, which has to feel so much better. The nurses (Rod and I) are now administering her meds orally or with food...


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Wednesday 26 August, 2009 (DAY 16)

Posted by Peta Long on Wednesday, August 26, 2009, In : Charlotte Update 

Sorry that we have been slack with the regular updates about Charlotte. She has been out of intensive care and back in the neuro ward for four days now.

 

The days have been quite slow and difficult for Charlotte. As she improves each day she becomes more agitated by the confines of C1 North. A combination of steroids, antibiotics and anti-seizure       are making her extremely hungry, agitated and wide-wake at night. So, an overtired, ravenous toddler attached to central lines and a drip mak...


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Saturday 22 August - DAY 12 -Indulgence Day!

Posted by Peta Long on Saturday, August 22, 2009, In : Charlotte Update 

Well, it goes without saying that you can never have too many friends or say too many prayers. In our case we are eternally grateful. We are sorry that we don't reply to your messages but they are read with such gratitude and appreciation. Our family, work colleagues, past work colleagues, relatives (close and distant), friends interstate, overseas and next door; we thank God for you all everyday.

 

These past few days as we wait for the pathology have been marked by such positivity. We are e...


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Thursday 20 August, 2009 - Charlotte upstages Miss World (in her parents eyes!)

Posted by Peta Long on Thursday, August 20, 2009, In : Charlotte Update 

Charlotte had a good night. She slept soundly and her temperature had subsided. She ate Weet-bix, yoghurt, half a boiled egg and a bottle of milk. The nurses keep saying it's the steroids and I laugh because those who know her well know that there is a reason why she is such a chubs; and it's not the steroids. She just loves her food!

 

She spent the morning playing with lots of toys, most of which you have all sent to assist her recovery. So, thank you! I got my morning fruit salad from Uncl...


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Charlotte's List of Medications

Posted by Peta Long on Thursday, August 20, 2009, In : Friends and Family 
Rod sent through a new photo today - Charlotte's list of medications (see photos page)... and I think it's multi-page!
Peta
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Wednesday 19th August, 2009

Posted by Peta Long on Wednesday, August 19, 2009, In : Charlotte Update 

A big hi to all our supporters and Charlie's fan club,

Well 1 week has passed since our news, in reflection it is still beyond our comprehension to fathom the magnitude of what is unfolding. Beck and I have decided the best way to cope is to get through one day at a time and not to think about all the possible scenarios and their respective repercussions. I urge you all to do the same and please do not research the internet as this is the surest way to be misinformed and upset.

Charlie has ...


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Tuesday 18 August, 2009

Posted by Peta Long on Tuesday, August 18, 2009, In : Charlotte Update 

Rod's last update described one of our really challenging days. Well, one of our really, really challenging days. Subsequently, it goes without saying that it was excruciating for our little Charlotte.

A sleep( as much as you can get when you are in hospital) and a shower each morning help me start the day fresh and with some renewed hope for Charlie. That is all we can really do to help her at this point.

When I arrived at ICU at 6am she was sleeping peacefully. Her IC Nurse, Gerry, has be...


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A Day In the Life

Posted by Peta Long on Monday, August 17, 2009, In : Charlotte Update 

As you have read today started of with a much needed injection of hope. She also used both hands to feed herself with the bottle (the nuero's were quite concerned there would be complications with the left side in particular left arm). A little smile radiated as did the words ma ma and dad dad. Our joy was to be sort lived, around 4pm today she had 2 convulsive fits and stopped breathing the response from the medical team in ICU was impressive and did instill confidence. As a result Dr Jacobs...


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Body Benefit organises weekly meals-on-doorstep!

Posted by Peta Long on Monday, August 17, 2009, In : Friends and Family 

Brooke Bagnall from Body Benefit has kindly organised a weekly roster by which her clients are preparing meals for Rod, Bec and Madeleine (yes, even toddler meals!). Members of the morning boxing or PT class on Monday are on the roster and Brooke is arranging a cold box for delivery to Rod and Bec’s house each Monday. Don’t eat it all at once Rod! Good on you Brooke, Phil and all your supporting friends and members of Body Benefit !!

 

J Peta

 


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*17 August - Post Operation - Second message 12.30pm*

Posted by Peta Long on Monday, August 17, 2009, In : Charlotte Update 

There has been good progress since Rod posted the previous message (8am this morning) Charlotte has been taken off the ventilator and is breathing on her own, she has full movement of the left side of the body, the MRI showed that Erica had removed all but 25% of the tumour and she is kicking, pulling and moving well. In fact she is being quite hard work.

She will remain in intensive care for at least another night and will be monitored carefully. We are waiting eagerly for the pathology to ...


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POST OP UPDATE - Monday 17th August (From Rod and Bec)

Posted by Peta Long on Sunday, August 16, 2009, In : Charlotte Update 

Hi to all, thankyou for you outpouring of support, it has been heart warming to receive so much support in this very dificult time.

Saturday was a very diificult day, one light story for the day however was, we went to the local pub for lunch to escape the hospital, we placed a bet on the horses we went for the trifecta 1st Stike One (the first of Charlie's ops) 2nd Disco Dancer(Beck) 3rd Rocket Rod, and it came in.

Beck and I were quite upset yesterday morning until we spoke to the neuro sur...


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OPERATION DAY - Saturday, 15 August, 2009 (From Bec and Rod)

Posted by Peta Long on Sunday, August 16, 2009, In : Charlotte Update 

Charlotte didn't sleep much during the night. I think somehow she knew what was happening. The nurses came to prepare her at 7.30am and Rod and I took her to theatre at around 8am. There she was checked again and we put on our robes and hats to enter theatre until she was to be anaesthetised. She laughed hysterically when she saw Rod in the theatre gown and hat, which made us feel better.

 

The neurosurgeon (Erica, our angel!) came in to check on Charlotte and us, too. The neurological team a...


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Message from Bec and Rod

Posted by Peta Long on Friday, August 14, 2009, In : Messages from Bec and Rod 
Message to be updated
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Messages from family and friends

Posted by Peta Long on Friday, August 14, 2009, In : Friends and Family 
Hi Rod and Bec, Just a short message tonight to let you know that we are all with you tomorrow, we'll be with you every moment, and sending our love. Love you Charlie Belle  :)  Pete, Greg, Kane and Chloe xxxxxxxxxx
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