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!