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Overall, things are good

With the exception of presently being in a hospital bed again, things have mostly been on the up for Pink Fizz the past few months.

Out of the ward in Sydney for sometime now, there has even been reintergration into school. Sometimes though, a little stone in a path can trip up even the most cautious.

For a week or so now, Pink Fizz has been in a regional hospital, spiking a fever, on IV’s trying to get to the bottom of what her body is fighting off.  Despite it, she is stil spunky, “cracking jokes” and being the cheeky monkey she is known as.

More to follow.

STORMon the KOKODA

Dr Stormon is Poppy’s main Liver Specialist in Sydney. He and his two brother inlaws are walking with backpacks full of phonebooks to train for the walk. He is a lovely man, very good to our Family and really looks after Poppy very well.
Wendy-Ann 

STORMON 

THE KOKODA 18-27 APRIL 2008 

Sponsor Dr Michael Stormon and his mates as they walk the 100km Kokoda Track 

over Anzac Day 2008, and support the Liver Transplant Unit at The Children’s 

Hospital at Westmead, Sydney. Sponsor Michael via the Liver Transplant 

Unit, Locked Bag 4001, Westmead, 2145 or go to: www.vericapfinance.com 

and follow the links. Donations above $2 are tax deductible. 

Trek dates: PAPUA NEW GUINEA 

http://www.everydayhero.com.au/Michael_Stormon  

 

 

Poppy’s chance to bloom

01.02.2008

From the Grafton Daily Examiner

LITTLE girls with red hair, blue eyes, hearts of gold and a wicked sense of humour should not have to go through their first eight years of life in pain.

Especially when they’re called Poppy Jazz.

It’s such a cute name for just about the cutest kid you’ve ever seen but it’s only now, after her second liver transplant, that eight- year-old Poppy Jazz Macleod, of Wooloweyah, is able to let go of a pained expression, irritability that arises from feeling sick all the time and of course the fatigue that takes over a little body that is continuously fighting to keep itself alive.

Her previously yellow skin has begun to glow now, her once exhausted expression has vanished to make way for the light and Poppy suddenly wants to go to the beach.

“She was never interested in going swimming before,” said Poppy’s mum, Wendy-Ann yesterday.

“She was always too sick, too tired, too cranky.

“Poppy hasn’t really changed, I could always see who she is, but now everyone else gets to see how gorgeous she is, not just me.”

Wendy-Ann got the phone call she’d been waiting for at 1.30am on a night not long before Christmas. There was a compatible liver on its way to the Children’s Hospital at Westmead and Wendy-Ann had about 10 minutes before the ambulance arrived to take her and Poppy to Grafton Airport.

“The Red Cross organized it all,” said Wendy-Ann. “They had us in Sydney by 5am. All the way down, all I could think of was the idea that someone – probably a child, had just died somewhere; that a family was in grief. I felt so sad but it probably stopped me from feeling scared for Poppy.

“By the time we got to the hospital, my mind turned to her and what was about to happen. We’d been through this before when she was only 13 months old, but then she had complications of internal bleeding and she’d had months in hospital before the transplant.

“This time, things hadn’t deteriorated so badly, so it was already a better start. It is scary, but we had the same brilliant surgeon, Dr (Albert) Shun – he knows us, he knows Poppy and when you know he’s on board, you feel fine.”

Poppy’s first liver transplant went well, but a subsequent virus meant she was unable to absorb the anti-rejection drugs and she spent the next six years struggling – sometimes critically ill, on and off the waiting list for another liver.

Home for just a week, Poppy has joined her older siblings – twins, Hannah and Liam who spent the past six weeks in one room at the hospital with Wendy-Ann and their father.

Hannah and Liam are back at school, but Poppy will be up and down to Sydney for a while yet for monitoring – there is some concern for one of the connecting arteries.

We asked Wendy-Ann what it was like for her during the 12 hour operation.

“I gave myself blisters from pacing,” she said.

“The other thing I would do was to have these head conversations and compose what to say in ‘thank-you’ cards to people who have helped me so much – like my case worker Kerrie Birch from Community Options and my friend Brian who has lent me his car and my good friend Penny in Maclean.”

 

 

“She’s powering”

Worldwide clocks are ringing, fireworks are lighting up the sky and there is merry cheer in abundance.

Upstairs in the Clancy Ward, Poppy is making a bigger bang than the combined effort of the best pyrotechnic makers put together.

Today’s SMS reads “She’s powering. Walkin to toily. No painkillers, she’s gained bady fat and lost tummy fluid weight. Losin drips and lines daily, I reckon the drain’ll go this week. Staples out tomorrow.”

So she is up and getting active.  The swollen tummy is shrinking, the IV drips are being removed, the morphine has been turned off and perhaps the drain that is removing excess fluid from her chest will be taken out sometime soon.  The staples that are keeping her little chest held together since the surgery are about to come out. 

As Wend says, “She’s powering.”

 

 

Looking up into the night sky never ceases to be magical. 

As Poppy approached, and now turns, the corner into 2008, a new star appeared in the nightsky.  Like other stars, it radiates an intense beauty, and for some, it shines brighter than most.  To the family of that star, whose lives are no longer the same now that their star shines from such a distance, we think of you deeply at this time.

***************

Poppy is fighting hard.  Respirators are off, she is awake, has already been moved from the intensive care and is now in the transplant unit where she will remain the next couple of months.  There was another mid week trip to surgery, and the odd hiccup that are all expected given the circumstances.  An sms came during the week to say she was sitting up in the ICU (prior to being moved) watching TV and eating a lemonade iceblock. All indications are that the surgery has been successful.  The twins flew to Sydney on Saturday and they are all together, ready for the new start.

…colour…

 

 After the hours passed quickly before everyone on Sunday, and then slowed during the waiting, little Poppy made it through the 13hour surgery.

Wendy is in an amazing, positive and uplifted frame of mind and the surgeons have been very happy with how everything went on Sunday. 

Poppy is presently being kept asleep and on a respirator and will remain so for the next few days. 

Despite this, Wendy says Poppy looks so beautiful, her skin changed colour overnight back to a healthy tone, her swollen tummy has flattened out, the pressure on her veins has disappeared.

I have to pass on the biggest amount of thanks to all who kept Poppy’s spirits up over the past twelve months.  The pictures, cards and prayers that arrived cheered her up no end and kept her positive even when it was hard for a 7year old to understand and when it seemed time was against her.   She was woken up at 1.30 am Sunday in Australia to be told the call had come and as she went into surgery later in the day after the trip to Sydney, she remained as positive as she has been in a long time….her fear was gone and she was looking forward to the future.

I’ll try and keep the web page updated as there is news and in the meantime I’m working on having her wake up next week to colour, colour and colour…..so if you have a few minutes to send a picture again or pass this on to someone who can,  the address is:

Poppy McLeod
C/- Clancy Ward - Liver Transplant Unit
The Children’s Hospital of Westmead
Locked Bag 4001
Westmead  NSW 2145
Australia

Please continue to keep in your thoughts, the family who made this possible for Poppy and who are mourning someone very special.

There can be no heading or title for such a post. 

Whilst it brings hope for some, it brings loss for others.  A phone call just came, midnight Paris time, 10.00am Sydney to say the Poppy went into surgery an hour ago for a transplant.  Hopefully the surgeons will approach Wend in 10hours and announce that little girl is doing OK.

Right now, there is a heavy heart for Poppy, ….

an even heavier heart for those who have given her this chance.

 

There are things that we all carry through life in memories; smells, colours, places, something that engrains those moments in our memories for as long as we can hear them, see them, imagine them.

When it comes to Poppy, and her struggle, it is sounds. For as long as they are able, my ears will hear that sound. 

It was in the early hours of the morning. Poppy had been given a bath.  The ward was silent. She clung to Wend’s shoulders, her blue eyes stretched wide, full of confusion.  I left Wend upstairs, holding Poppy, fearful, hopeful, terrified.

Soon after, Poppy was taken from the arms that wanted to cling to her as she did to them.  She was taken to surgery in preparation.

Wend came and we sat, not much to say.  And then came that sound that replays in my ears. Chnk, chnk, chnk,chnk, chnk, chnk, chnk, chnk, chnk.  The blades of the helicopter, turning and bringing with each turn, hope for a future for a little baby who knew not much more than the inside of a hospital ward.  With each turn,  it also carried the sound of loss and devastation to those who were grieving whilst they gave Poppy a chance.

Last week there was a sound that came again.  A sound that rings in another turning point in her lifelong battle. The phone rang to say the time has come. Time to wait for the phone call that initiates the journey to Sydney where the sound of chnk, chnk, chnk, chnk, chnk, chnk, chnk, chnk…..

 

Distraction

After the trip to the Westmead, tomorrow brings some relief. 

Blood tests, bone density tests that show deterioration, vessels in her nose have been cauterized and her spleen has been given an ultrasound to monitor it’s status….in decline.

Transplant surgery hangs in the background and fear lingers in Poppy’s mind.  She awakes at night, scared she is dying.  How do you distract an eight year old from being so aware of her situation?  How do you offer distraction and keep her happy? 

Tomorrow she can go back to school and have something else  to think about…..enjoy those dinosaurs Pink Fizz!

Disorientation

Whilst so much has happened, it hasn’t been with cheer, nor smiles, nor laughter.  The time wasn’t right to share.

Little Poppy, our little cup of pink fizz that sparkles with so much energy and love was officially ”worked up” in June to take her place on the transplant list.  From here, there is no turning back, sauf, a miracle.  There is only one road ahead, it heads in only one direction.  The need is to arrive at the destination with enough fuel left in the tank to turn the corner again.

Whilst everyone expected it, it was a hard, heavy blow, the strongest to take.  Absolutely, heart stoppingly, guttering. 

Then, she went home, school broke up for a two week break and last week she turned an amazing eight years old.

HAPPY BIRTHDAY POPPY, hippip-hooray, hippip-hooray…..you look like a monkey and you smell like one too!!!!

Having passed her seventh birthday in Westmead having tests, it was negotiated to delay Poppy’s return to Sydney last week and have a birthday free of needles, tubes, doctors, nurses, pricks and probes.

Yet, it could only be delayed so much, and yesterday Poppy returned to Sydney to undergo more assessments to establish what has happened in the past month.  Here-in begins the road ahead. 

It is taking it’s toll, she is reluctant to talk on the phone, she is quieter.  The spark isn’t there this week.

 

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