My Updates
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Wednesday 19th Feb Update: Charli has travelled to the US twice to date, she is now 18! Spearhead Trial at the National Institutes of Health (NIH) Washington DC will see us heading back to the US later in the year. New t-cells have destroyed around a third of the cancer in her lungs! The cells are less active now but still keep her stable. NIH is looking after Charli so well, along with our Oncologist and team at RCH. Treatment was incredibly challenging. Thank you all for making this possible, we have used the funding for our two trips and expenses incurred. Each day is a blessing. My beautiful, smart, kind 16-year-old girl had her whole life ahead of her, then the words ‘your daughter has a rare cancer’ changed her future and she began her challenging journey. She has been incredibly resilient and stoic trying to sustain a life balance between health, friends, and family. We are all so proud of her. She is mature, beyond her years. A trip to our GP to investigate what we thought might be asthma changed our lives forever in July 2021. Here’s us blissfully unaware of the journey and struggles ahead. We were swiftly taken by ambulance to Royal Childrens Hospital, straight to ICU after a mass was discovered in her neck, hiding beneath her collar bone, beginning to obstruct her breathing. After a week in ICU, we were wheeled into the oncology ward, our Oncologist could confirm or worst fears, Charli had Synovial Sarcoma. If the team at RCH can remove the entire mass with a healthy margin, then we might be able to remove the cancer altogether. The surgery would be challenging and risky. It was in a tricky spot to achieve a margin around the mass. Charli had intensive radiation and chemo to prepare for the surgery. An intensive, risky surgery resulted in the mass being removed, they considered with a tiny margin, we were elated with the news, and so were the team at Royal Childrens. Charlie recovered well. We thought we were in the clear. We celebrated Christmas that year feeling more grateful than ever, a routine scan in March confirmed our worst fears. The cancer had spread to Charli’s lung. Charli had surgery to remove one large mass in the hope it would not spread. It spread into both lungs. Since then, Charli has engaged in two trials, the first making Charli so unwell she ended up with litres of fluid on the lungs and three surgeries to manage this. A challenging time for Charli, long periods of time in the hospital feeling very unwell. The second was tablets and Chemo, the disease was ‘stable’ however Charli had no quality of life, she was very unwell mentally and physically. We continued the tablet and took a break from chemo over Christmas to see if the tablet alone would suffice. For this reason and the fact the disease was ‘progressive’ we were sadly taken off the trial, this drug is not on the PBS. We promptly started with a new drug, no chemo. This is where we are now, the cancer is in both lungs, however the growth has slowed with most tumors, and Charli is considered tentatively stable. We have been told these drugs will not hold the cancer for long. Charli has a good quality of life currently, feeling well enough to do most things an 18-year-old should be doing, she has been incredibly stoic, pragmatic, and brave in the face of all this. A Car T trial at Peter Mac in Melbourne Australia had the entry age of 18, our plan all along was to bridge to this trial once Charli turned 18 in May just past. Unfortunately, they would not take her at a younger age. The trial was cancelled shortly before her 18th birthday. We were disheartened to learn we have reached the end of the line for treatments available in Australia. We were advised of a T Cell treatment overseas, after some testing, we recently learnt Charli is a match for a trial. Charli has decided to take part in the trial at NIH Washington, Spearhead Trial Phase II. The first part is to go to Washington NIH and give blood, then we return to Australia. The blood is then engineered and about one month later we return to Washington for the T Cell treatment. We need to move swiftly, lung health and flying could become a barrier to getting the treatment. I am so grateful to the staff at the hospital and to my family and friends who have been with us on this journey and my employer who has been incredibly supportive. I am very grateful to Charli’s friends who have ‘kept it normal’. Every day is a blessing. It’s difficult to reach out further and ask for help but sometimes we have no choice. I’m hoping with this page and Charli’s story we can raise some money to help us get from Australia to Washington DC and back, twice, so Charli can engage in this trial and possibly take the worry out of some expenses in Australia while we are in Washington. Thank you for reading Charli’s story! ShareThank you to my Sponsors
$5k
Rca Transfer
$2k
Kiri Smart
With you all the way gorgeous girl
$1.15k
Wolfpack Beers
All our love from the Wolfpack Beers families
$1,000
Vincent Cretella
Good luck thinking of you both
$1,000
Rca Transfer
$1,000
Richard Stokes
$1,000
Carolin Poon
Best of luck Charli. Your strength is inspiring!
$1,000
Darren Stead
Good luck Charli, Darren
$1,000
Edan Montgomery
I’m following your story Charlie Girl and you are an absolute warrior. May God bless you dear lady xo
$500
Margie Rees
Luv you guys so much, Good luck Charli xxx
$500
Irene Mckirdy
Wishing you much love and luck in this journey 💖💖💖
$500
Lisa's Lacies
Love you lots Charli, Lisa, Mark and Tommy xx
$500
The Murphy’s
With love from the Murphy’s
$500
Andre Guerinet
Wishing you all the best Charli. From Andre and Annette Guerinet at Mulots Pâtisserie S.A.
$500
Rca Transfer
$400
Kathryn, Sean, Coby, Jess,val, Bill Arbuckle
Thinking of you, sending lots of love. ♥️😘
$250
Michael Bodnar
Stay positive and enjoy the small moments as much as the big
$250
Green Scientific
$250
Lance And Claudia Sterling
Charli and Michelle we continue to think of you and pray for the success of your treatment Lance & Claudia Sterling
$250
Vic Camenzuli
Best of luck on the trial!
$250
Hilary Johnston
$250
Richard & Kate Vines
With our very best wishes. Stay strong.
$250
Rhonda Marshall
Sending love to you all. Stay strong 💕
$200
Anne And Bryan Langworthy
Wishing you all the very best for successful journey Charli ❤️
$200
Boutcher Family Boutcher
Sending love and strength, from the Boutcher family xx
$200
Steven Beer
Love you Charli, from Erin, Alexis and Steve
$200
Carmel Spruhan
Not you, beautiful, smart and amazing Charli. Stay well. Love, Mrs S.
$200
Maxine Jardine
$200
Vicki Woolard
With your loving family holding you close & what is obviously your can do attitude, wishing you every chance of success Charli on this next journey.
$200
Jan Impey
Wishing you all the best Charli.
$200
Evelyn Schultz
Dearest Charli, You and your beautiful Mum are always in my prayers. You are an incredible young woman who has endured so much. Your courage and resilience are to be admired. Blessings and love, Evie
$200
Simfix Electrical Services
$200
Bleddyn & Rebecca
$200
Leonard And Maree Castle
Good luck Charli, from Maree and Len (Shoreham)
$200
Sarah Kean
You're an amazing person Charli. Wishing you everything positive with your treatment in America. Xxxx
$150
Milner Family Milner Family
Stay strong Charli, sending big hugs to you and the family ❤️
$150
Bleddyn Dickinson
Thoughts and prayers Charl!
$100
Maria Handler
$100
Cody Baker
Good luck and I wish you all the best 🤍🤍🤍
$100
Salvatore Peluso
You got this Charli!! Sal, Carla, Dan, Lucas
$100
Chelsea Vella
Wishing you all the best for your treatment and recovery.
$100
Yilu Xu
Please get well Charli!! You’re so strong! 🫶
$100
Michelle Belbin
Stay strong Charli. Good luck with the treatment. ❤️
$100
Emily Dremel
Wishing you all the best in this journey. stay strong xx
$100
Gail Page
we love you lots and lots
$100
Becky Nelson
Sending lots of positive vibes & hugs xx
$100
Joan & Tony Dickinson
All the best Charli
$100
Jeeny Ra
Wishing you for the best outcome Charli.
$100
Rca Transfer
Donating as a client of Teighan Lee Hair & Make-up
$100
Cheryl Pavlidis
Wishing Charli all the best xx Cheryl and George pavlidis
$100
David Mashiter
All the Best Charli
$100
Ruby Bodnar
$100
Leanne & Chris Glenister
Our thoughts are with you. Love to you and your family
$100
Sharon Murr
$100
Rodger And Jo Sharpe
Sending our love
$100
Cathy & Stuart Mitchell
All the very best Charli ❤️
$100
Pam Elias
Good luck Charli
$100
Tina Bampton
$100
Eliza Surkitt
Lots of love to your and your family Charli x
$100
Marion Dennis
$100
Leo Willis
$100
Shannon Cooper
$100
Rca Transfer
$100
Sharon Michael
Good Luck Charli and family, from Erin’s Aunty xox
$100
Dimple Bhardwaj
Good luck! Thinking of you both and sending lots of hugs!
$100
Lisa Scott
Hi Charli & Michelle - sending you both lots of love xxx
$100
John Cass
$100
Rca Transfer
$100
Margaret & Peter Dunbar
Thoughts are with you all, stay strong Charli.
$100
Tracey And Martin Fink
We're all behind you and your family
$100
Kylie Mcintyre
Thinking of you always beautiful girl ❤️❤️
$100
Rca Transfer
$100
Kerry Sinclair
Sending hugs to you Charli and all of the family. 🥰
$100
John And Cheryl Iser
Our best wishes for success here. You have managed so very well.
$100
Rca Transfer
$100
Michelle Brown
Sending love, positive thoughts. Charli sounds like an amazing, strong, resilient young person. Xx
$100
Rca Transfer
$100
Dickinson Famiky
We love you Charli.
$75
Adam Marshall
Sending you well wishes xx
$50
Bailey Martin
$50
H M
$50
Bridie Drane Johnson
much love x
$50
Amelia Fink
$50
Jen Matheson
Wishing you all the best for your treatment and a speedy recovery. Love and blessings Jen
$50
Kaia Yeoman
ur amazing charli- best thoughts for you!!!
$50
Sesi Fiadonu
$50
Pauline Brown
$50
Dawn Bruce
Best wishes
$50
Daniella Smith
$50
Pauline Dainty
I wish you the very very best.
$50
Teighan Lee Hair And Makeup
$50
Jenni Bourekas
Sending positive vibes your way xx
$50
Tania Brizzi-boyd
$50
Betty Dixon
All the best
$50
Judy Valk
May this treatment give you the life you deserve and its success be available to anyone who needs it in the future.
$50
Rca Transfer
$50
Basil Brush
$50
Bek Bainbridge
$50
Philip And Richelle Leach
$50
Michael Yeomans
$50
Craig Young
$50
Aidan Russo
$50
Jodie Bray
Best of luck on the trial.
$50
Scott Clode
$50
Sarah Smith
$50
Brigitte Dickinson
Get better Charles xx
$50
Peita Cooper
Love to you all and I’ve got everything crossed that theirs an amazing outcome x Peita
$50
Meg Yates
Sending hugs and get well vibes. Good luck Charli x
$50
Carmen Collins
All the very best Miss Charli, and big hugs to the family xx
$50
Jo Monrroy
Sending lots of healing and love xo
$50
Kathryn Kidd
Wishing you all the best for a successful trial x
$50
Martine Ziino
$50
Tooba Aram
$50
Sharron Porter
Thinking of you all
$50
Neroli Blyth
Sending love & strength x
$50
James Garzia
Goodluck ❤️
$50
Christine Dossantos
Hi Charli best of luck with the new treatment. My prayers are with you and your family. 💕🙏
$50
Kate Plumridge
$50
Alison Robbie
$50
Nowella Ahlgren
$50
Rca Transfer
Sending lots of love for healing 💖
$50
Rca Transfer
Praying for you, Charli 🌹
$50
Susan Harrigan
Margie sent me. ❤️
$50
Helen Forsyth
$50
Sue Proctor
$50
Rca Transfer
All the best Charli
$50
Alison Smith
$50
Christine Dossantos
Hope all goes well Charli. You are a very brave young lady. Big 🤗
$50
Rebecca Valk
$50
Lucy Matheson
Thoughts are with you all, stay strong Charli 🤍
$40
Belinda Sandham
$35
Kerry Burgoyne
$30
Diane Hedin
Thinking of you Charli.❤️🥰 xx
$30
Stockdale Family
Wishing you all the best.
$28
Carla Peluso
Here for you Charli🩵🩷💚
$25
Blair Cardwell
$25
Carla Peluso
Here for you Charli 🩵🩷💚
$25
Kerry Burgoyne
Lot's of love to you. 💕
$20
Sandra Brown
Hoping for your full recovery Charli
$20
Jenny Hunt
$20
Rca Transfer
$20
Maria Pintaudi
$20
Marlene Spiteri
Wishing you all the very best.
$20
Rca Transfer
$20
Amanda Jones
Amanda Jones - work with Jason Dickinson
$20
John And Elly Oliver
$20
Rca Transfer
sending sm love <3 stay strong beautiful girl
$20
Rca Transfer
$20
Lindsay Mckirdy
$20
Rca Transfer
$10
Rca Transfer
$10
Rca Transfer
$10
Carla Peliso
Here for you Charli🩵🩷💚
$10
Rca Transfer
$10
Rca Transfer
$10
Sian Schramm
$10
P & D Dunn
$10
Aimie Cribbin
$10
Katie Elderton
Sending love and prayers Charli xxx ❤️
$6
Rca Transfer
💕
$5
Rca Transfer
$4
