Diagnosed With a Brain Tumour at Just Eight Months Old
The First Sign Something Was Wrong
Amber was just eight months old when her mum, Lara, noticed something unusual with her eye.
What followed was something no parent expects.
After investigations and an MRI scan, Lara and Amber’s dad were told that doctors had found a tumour in their baby daughter’s brain.
Amber was diagnosed with a pilocytic astrocytoma.
She was only eight months old.
For Lara and her family, life suddenly became about hospitals, scans, surgery and trying to understand what was happening to their baby.
In this episode of the Aunty M Brain Tumours Talk Show, Lara talks openly about what happened next — from Amber’s first major brain operation and years of chemotherapy to travelling to America for proton beam therapy and dealing with the lasting effects of childhood brain tumour treatment.
Most importantly, Lara talks about the person behind the diagnosis: Amber.
Watch Lara tell her story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version
Brain Surgery at Eight Months Old
Soon after her diagnosis, Amber underwent major brain surgery.
For Lara, handing her baby over to the surgical team and waiting through the operation was terrifying.
Although surgery was an important part of Amber’s treatment, it was not the end of their brain tumour journey.
The tumour later showed signs of growth and Amber needed chemotherapy.
She was still incredibly young, and treatment became part of her early childhood.
Chemotherapy and More Treatment
Amber went through chemotherapy in an attempt to control the tumour.
There were periods when treatment worked well, but the family also faced the uncertainty that comes with repeated MRI scans.
For a while things could look encouraging, only for another scan to bring difficult news.
Lara talks openly in our interview about what it was like living through that cycle as a parent — treatment, scans, results and waiting to hear what would happen next.
Over the years, Amber needed further treatment as doctors worked to keep her tumour under control.
Proton Beam Therapy in America
Eventually, proton beam therapy became another part of Amber’s treatment plan.
At the time, Amber and her family had to travel from the UK to Oklahoma in America for treatment.
They spent several weeks away from home while Amber underwent proton therapy.
For a child who had already experienced surgery and chemotherapy, it was another enormous stage of treatment — and another huge adjustment for the whole family.
Today, NHS high-energy proton beam therapy is available at specialist centres in Manchester and London, but when Amber needed treatment, travelling overseas was part of the family’s experience.
An Emergency After Treatment
Amber’s journey did not end when proton therapy finished.
After returning home, she became unwell and doctors discovered she had developed hydrocephalus, a build-up of fluid in and around the brain.
She needed urgent surgery.
It was another frightening moment for Lara and her family after everything Amber had already been through.
Amber once again recovered, but the years of treatment had an impact that would continue long after the hospital appointments became less frequent.
Growing Up After a Childhood Brain Tumour
One of the most important parts of Lara’s interview is what happened after treatment.
It is easy to think that once treatment finishes or a tumour becomes stable, the story is over.
For many children affected by brain tumours, it isn’t.
As Amber grew older, Lara and the family began dealing with some of the longer-term effects of her tumour and treatment.
In our conversation, Lara talks about areas including memory, education, hormones, vision and emotional wellbeing.
These effects became part of Amber’s life as she grew from a baby into a child and then a teenager.
And support needs can change as children get older.
Amber Today
Amber is now 16 years old.
Looking at the photograph of Lara and Amber today alongside the photograph of Amber as a baby really brings home just how much life has happened since that first diagnosis.
Amber has grown up with a brain tumour forming part of her story, but her diagnosis is not everything about who she is.
Lara’s interview also highlights something that is sometimes forgotten when we talk about childhood brain tumours.
Getting through treatment is incredibly important.
But families may still be dealing with the consequences many years later.
About Amber’s Tumour: Pilocytic Astrocytoma
A pilocytic astrocytoma is a type of glioma that most commonly occurs in children and young people.
It is generally considered a slow-growing, low-grade brain tumour.
However, the impact of a pilocytic astrocytoma can vary considerably depending on where it is growing in the brain, the child’s age, whether the tumour can safely be removed and whether it continues to grow.
Treatment may include surgery, chemotherapy or radiotherapy.
For Amber, treatment included:
- Brain surgery
- Chemotherapy
- Further surgery
- Proton beam therapy
- Emergency treatment for hydrocephalus
- Long-term monitoring
The term low grade should not be confused with “not serious”. Even a slow-growing brain tumour can have a major effect depending on its location and the treatment required.
Read More Astrocytoma Stories
Read more personal Astrocytoma stories on Aunty M Brain Tumours
If You Have Recently Been Diagnosed With an Astrocytoma
If you have landed on this page after an astrocytoma diagnosis, whether it is your own or someone you love, please know you are not alone.
Every astrocytoma story is different.
Astrocytoma’s can vary in grade, location and how they affect a person’s life. Some are slower-growing, while others are more aggressive.
Some people have surgery, radiotherapy or chemotherapy. Others may have regular scans to monitor their tumour. Some experience long-term effects, while others face different challenges during treatment and recovery.
Try not to compare your journey too closely with anyone else’s.
Reading other people’s experiences can offer comfort, understanding and reassurance. However, another person’s diagnosis or outcome does not determine what will happen to you.
Take things at your own pace, ask questions and remember that you do not have to face this journey alone.
Where to Go After an Astrocytoma Diagnosis?
If you or someone you care about has been diagnosed with an astrocytoma, there are organisations offering information, emotional support, practical advice and opportunities to connect with others.
Astro Brain Tumour Fund
A UK charity dedicated to supporting people affected by low-grade gliomas, including Grade 1 and Grade 2 astrocytoma’s.
The charity provides information, opportunities to connect with others and funding for research into low-grade brain tumours.
The Brain Tumour Charity
Provides information about different types and grades of astrocytoma, possible treatments and living with a brain tumour.
It also offers emotional support, support groups and resources for patients, families and carers.
Visit The Brain Tumour Charity
Read its information about astrocytomas
Brainstrust
Offers practical and emotional support to people living with brain tumours, including those affected by low-grade and high-grade gliomas.
Its services include individual support, coaching, information and opportunities to connect with others who understand life with a brain tumour.
Brain Tumour Support
A UK charity providing support for anyone affected by a brain tumour, including patients, families, carers and loved ones.
It offers individual and group support, opportunities to connect with others and specialist emotional support.
Brain Tumour Research
Funds research into brain tumours and campaigns for greater awareness and investment in research.
Its work aims to improve understanding, develop better treatments and ultimately find cures for all types of brain tumours.
NHS Neuro-Oncology and Rehabilitation Services
Your specialist medical team can help you understand your particular astrocytoma diagnosis, treatment options and follow-up care.
Depending on your needs, additional support may include physiotherapy, occupational therapy, speech and language therapy, psychological support or help managing seizures and fatigue.
Ask your GP, specialist nurse or neuro-oncology team about appropriate referrals.
Would You Like to Share Your Astrocytoma Story?
At Aunty M Brain Tumours, we believe every person’s experience deserves to be heard.
Whether you have recently been diagnosed, are undergoing treatment, living with long-term effects or supporting someone you love, your experience could help another person feel less alone.
Find out how to share your brain tumour story
Claire Bullimore is an influential figure in the brain tumour community. She embarked on her brain tumour journey and was diagnosed with an intraventricular meningioma. In response to her experiences, Claire founded ‘Aunty M Brain Tumours,’ a platform dedicated to sharing brain tumour stories. Based in London, England, Claire also identifies as a blogger and speaker for Aunty M Brain Tumours, shedding light on the challenges faced by those diagnosed and amplifying their voices for better awareness and support. Through her dedication and advocacy, Claire’s efforts have been recognized by Brain Tumour Research and other organizations, spotlighting her commitment to making a positive difference for individuals impacted by brain tumours.
