January 2024 we heard the words that no parent wants to hear, our beautiful little 2 year old girl Florence has a brain tumour creating significant pressure inside her head causing the neurological problems we had been seeing including not being able to walk.
She would need to have surgery in the next few days to reduce the size to hopefully relieve the pressure, as it can not be fully resected, and to be able to take a biopsy to find out what type of tumour it is.
Our little family was devastated and our little boy Spencer who was 5 years old, Autistic and non verbal, was left with our amazing family.
During surgery Florence had complications which left the left side of her body unable to move and Florence spent her 3rd birthday, 4 days after surgery, in ICU. Florence had many complications and it was a long recovery.
Florence had to learn to eat, talk, sit up, use her left leg and arm, and then learn to walk again. All while going through chemotherapy which started in February 2024 to further try and reduce the tumour. Although it had some effect, chemotherapy strongly affected Florence and she was extremely sick. The good news was the pressure seemed to be slowly reducing but her recovery and therapies were being hindered by how strongly affected Florence was.
6 weeks later they decided to stop chemo and apply for a new treatment called Trametinib a MEK inhibitor. This was something we could administer through an NG tube at home with minimal side effects.
3 scans over 9 months show the tumour reducing and Florence is very close to a full recovery from the brain injury through intense therapies. This treatment may continue for the next few years.
The biopsy came back, the tumour is called a Pilomyxoid Astrocytoma which is infused with her hypothalamus in her brain. This type of tumour flagged the neurologist to do gene testing and we found Florence has a lifelong disorder caused by a genetic mutation called Neurofibromatosis type 1 (NF1).
What this means is we can never fully remove the tumour and we need to monitor Florence her whole life. Both the brain tumour and NF1 can cause many different symptoms including tumours throughout her nervous system, bone deformities, growth problems. None are guaranteed and we’re hopeful we’ve been through the worst of it.
Florence today is the best she’s ever been! She is back at preschool when she can be, catching up on the social skills she missed with her extended stay in hospital.
This foundation has been created by our family to raise awareness of NF1 and help raise donations to the charity Red Kite who were there for us during our diagnosis and do amazing support work for families like us with a child with a brain tumour and cancer. We also included the Cancer Council who conduct and help fund vital research into treatment and prevention of cancer and tumours. Florence is a shining star and we thank all for you for the ongoing support we receive.
