THE CHILDREN'S BRAIN TUMOUR CHARITY

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What is Proton Therapy

This is an advanced form of radiotherapy that uses a precision high-energy beam of particles to destroy cancer cells. Because it is so much more precise than conventional radiotherapy, it can deliver a high-dose of radiation to the tumour whilst sparing surrounding healthy tissue, so reducing the risk of harmful side effects.

In regular radiation therapy, x-rays continue to give radiation doses as they leave the person’s body, whereas with proton therapy, there is less radiation dose outside of the tumor.  This means that radiation damages nearby healthy tissues, possibly causing side effects.

Proton beam therapy is only suitable for certain types of cancer, such as complex brain, head and neck cancers and sarcomas. For many cancers it may not lead to better outcomes than using high energy x-rays, which is still considered the most appropriate and effective treatment for the majority of cancers.

Movement must be limited while having the therapy. So a patient may be fitted with a device that helps them stay still. A person may need to wear a custom-made mask for a tumor in the brain to keep the head absolutely still. 

Proton treatment is painless and generally the side effects are minimal. A session will last for between 15 and 30 minutes.

Since 2008, patients who were eligible  and required proton beam therapy have been able to access treatment abroad.

There are currently two proton beam therapy facilities available in the UK, one in Manchester and one being built in London at UCLH. 

In order to get proton therapy a child’s consultant must recommend to a clinical panel that the treatment could be effective. If no suitable proton therapy is available in the U.K, you may be eligible to be treated abroad, with expenses paid by the NHS.

https://www.england.nhs.uk/commissioning/spec-services/highly-spec-services/pbt/

Camille's Story

Camille started high-dose chemotherapy treatment age 2 following the diagnosis of a brain tumour, she was given just a 30% chance of survival. The chemo took 15 months and during this time Camille was incredibly poorly, she was unable to walk, she lost all her hair, her physical strength diminished and she was fed via a nose tube. 

Camille underwent 3 extremely difficult and challenging brain tumour resections over the course of 4 months. Each of her surgeries carried massive risks. Understandably this put a huge strain on her family. Camille’s mother, Hayley,  in particular was suffering extreme levels of stress. (Read Hayley’s story)

Camille’s brain surgeries were successful and the family took Camille to the USA for an advanced form of radiotherapy, called Proton Therapy, funded by the NHS. The whole family moved to Jacksonville in Florida for 3 months. Over this time Camille received high-dose radiotherapy to her brain. Camille was anaesthetised every day, her head and body bolted to a table to ensure the beam was precise and to ensure no other areas were damaged. 

As a charity we decided to fund some special treats for the family at Disney World  Florida to give Camille and her siblings something to look forward to following months of hospital treatment. Via our charity partner in Florida we arranged for the family to stay in a luxury villa. We also gave them family tickets to Disney World, gifted princess dresses & arranged for Camille and her siblings to have a VIP ‘Disney Princess’ Day.

Despite the poor prognosis, the proton therapy worked for Camille and she started school. Camille’s family lived in fear of a cancer relapse and had to wait another 5 years to hear the words ‘remission’.

Camille has now reached a milestone 16th birthday and has just passed her GCSE’s.

Help Us to Help Children Like Camille

Naomi’s Story

Naomi was diagnosed with an aggressive brain tumour ependymoma, aged just four in 2007.She was given a 35 per cent chance of survival and underwent 3 brain operations and 28 rounds of intensive chemotherapy before she was told she was in remission from cancer in 2008.

Billy’s Story

Billy is 4 years old and instead of going to school and having fun with his friends, Billy is battling Diffuse Intrinsic Pontine Glioma (DIPG), a terminal brain tumour and the most aggressive childhood cancer. He was diagnosed in October 2023 and given up to 9 months to live.

Help us find a cure for rare brain tumours and give support today

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