At almost 17 years of age, Charlotte has faced a life unlike most teenagers.
Charlotte’s journey with brain cancer began as an infant, when at 15 months she was diagnosed with a type of brain cancer called ependymoma. Since that time, Charlotte has endured over 11 surgeries and years of ongoing treatments and scans.
Despite the challenges, Charlotte is a happy and dynamic young woman who is fast approaching her 17th birthday.
Charlotte’s mother, Rebecca, first shared her family’s story with Brain Cancer Australia five years ago. We checked back in recently to hear about Charlotte’s progress and learn Rebecca’s efforts to advocate for brain cancer research in the hope it will be defeated in Charlotte’s lifetime.
Charlotte (middle) with her family on her 16th birthday.
Unlike a broken arm or an injury you can see, the effects of brain trauma are often hidden, so people don’t understand what she’s gone through or what she still faces.
Charlotte has been tumour free for a number of years now, but we’re still very much connected with her team—her wonderful neurosurgeon, clinical nurse consultant, her oncologist, and so many others who have supported us along the way. Charlotte still has regular scans. They’ve become easier over the years, but they still wear her down, and I still sit right beside the machine, reaching in to hold her hand whenever she needs me.
We’re preparing to transition her to adult care, which feels both necessary and daunting. Charlotte presents well on the outside, but the cognitive challenges she faces have made adolescence particularly tough. Unlike a broken arm or an injury you can see, the effects of brain trauma are often hidden, so people don’t understand what she’s gone through or what she still faces. Brain cancer is so rare; she doesn’t have peers who’ve shared a similar experience. Still, she’s doing great. She’s a dynamic, happy young woman. I’m sure she gets frustrated at times, but brain cancer is all she’s ever known. She doesn’t have a comparison to what life might have been otherwise, and we’ve worked hard to take on each challenge as it comes and with a lot of grace and acceptance.
Charlotte (on the left) and her family.
In the nearly 17 years since her diagnosis, we’ve seen remarkable advances in other cancers, and it’s hard to accept how slow progress has been in brain cancer. Researchers are doing incredible work in their labs - work that could be transformative - but they constantly struggle for funding and the security of long-term contracts.
I don’t expect to see brain cancer defeated in my lifetime, but I hope Charlotte might see that breakthrough. With the work that Brain Cancer Australia is doing, I believe that is more likely than ever.
I remain as committed as ever to raising awareness for brain cancer because it’s not until you are told that your 15-month-old daughter has a large malignant and life-threatening brain tumour, that you truly know what it means to be heartbroken.
I can still remember the heartbreak and urgency of that time.
Charlotte faced invasive surgeries and numerous treatments when she was just a toddler.
For around eight weeks Charlotte had been displaying odd behaviour and just didn’t seem right. I finally took her to my GP for his opinion and I will never forget the look on his face when he said I needed to get straight to a paediatrician. I thought he was going to cry, and I felt like I was going to be sick. During our emergency appointment, we learnt that Charlotte had a brain tumour – a Supratentorial Anaplastic Ependymoma - one so large that it wasn’t allowing her skull to fuse shut.
We were instructed to collect a few things from home and go directly to Sydney Children’s Hospital where a team would be waiting for us. Charlotte’s first surgery was 15 hours long, but the tumour had not been entirely removed. She spent the next week in the intensive care unit attached to life- support machines under constant watch and on an enormous number of medications to keep her alive.
Despite this terrible ordeal, she had to endure another eight-hour surgery when it was decided that a total gross resection of the tumour was required to give Charlotte a chance at longer term survival. Charlotte was too young to have radiation so was given a UK paediatric chemotherapy protocol. It took 14 months to complete chemotherapy and 17 months of overall treatment. In that time everything that could possibly happen, did. Charlotte had several seizures, was in hospital virtually every week with many long stints in the isolation and ICU, endured 11 surgeries and numerous blood transfusions, as well as regular hearing, kidney and blood tests.
A photo collage created for Charlotte's 16th birthday.
At 19 months post treatment, after a routine MRI, we were told that Charlotte had relapsed. While surgery went well, and Charlotte needed a straight-forward course of radiation treatment for six weeks; things didn’t quite go to plan. Following surgery, Charlotte was left with virtually no frontal lobe and recovery after general anaesthetic for the radiation each day was exhausting. She suffered from emergence delirium and frontal lobe disturbance that rendered her aggressive and at times out of control as she awoke. Those times were extremely challenging, but we got through them thanks to an incredible support network.
The past few years have thankfully been free from invasive treatments. We try to live a ‘normal’ day-to- day life, but it’s not easy for Charlotte with the ongoing cognitive challenges. We remain optimistic, embrace every opportunity to enjoy the time we have and continue to share our story in the hope it will help others better understand the devastating impact of brain cancer.
I don’t expect to see brain cancer defeated in my lifetime, but I hope Charlotte might see that breakthrough.
