About Camille

Camille

Camille is now almost 5, she started school 4 months ago and is doing very well, her hair has grown back and now covers the multitude of scars over her head, she no longer has her NG tube or hickman line.  Apart from her very slight frame and lack of physical strength, Camille looks like any normal child. Intellectually she is keeping up with her school friends and is enjoying learning.

Camille has an older sister Lucia, whom she adores and a baby brother called Jude.  The children are all protective of one another, Lucia especially.

Camille will never be the child she once was, she has many issues, emotional, physical and developmental.  No child can go through what she has and remain unscathed, what she has endured has been truly horrific and terrifying.

There is no doubt that Camille is the most courageous and awe-inspiring child we know, she is our hero and we will do anything to ensure she has a happy and fulfilled life.  She inspires us each and every day, we are incredibly proud to have this wonderful, unique and beautiful girl as our daughter.

by Camille's Mummy and Daddy 2012

 
 
 
 
 

Camille's Background & Treatment

In June 2009, Camille, aged just 26 months, was diagnosed with an Intracranial Ependymoma situated in the fourth ventricle between the cerebellum and the brain stem at the base of the brain. The tumour was pressing against the cerebellum and brain stem making surgery too dangerous.  Camille started high-dose Chemotherapy treatment on 23rd July 2009.  The plan was to try and reduce the tumour to allow a resection to take place.  Chemotherapy was due to last 12 months.

 

The chemo actually took 15 months.  Camille was incredibly poorly over this time, she was unable to walk, she lost all her hair, her physical strength diminished, she was unable to eat and was fed via a nose tube.  She constantly suffered from life-threatening infections, including septic shock and kidney failure in May 2010.  Camille also had a shunt for the hydracepholous (water on the brain) which the tumour created, the shunt constantly became infected or blocked which required more surgery, she had 6 operations on her head to remove and replace shunts.

 

Over the course of the 15 months Camille underwent regular MRI scans. Initial scans reflected a stable tumour, after 6 months of treatment there were changes, small but significant reduction in tumour size and bulk.  Towards the end of the 15 months discussions took place to discuss the possibility of surgery.  It was still deemed incredibly dangerous and the surgeon was unsure if he could take all the tumour away, which was essential to give Camille the very best chance of a cure.

 

Camille's parents researched alternative solutions and found that Alder Hey children's hospital in Liverpool had an inter-operative MRI scanner in the operating theatre, following a meeting with the surgeon, Mr Mallucci, one of the top peadiatric neuro-surgeons in Europe, it was decided that she would undergo surgery in Liverpool.  Camille underwent 3 extremely difficult and challenging brain tumour resections over the course of 4 months.  Each of her surgeries carried massive risks.  Following her surgeries Camille was bruised, swollen and in severe pain as the muscles in her neck were cut to allow access to the brain.  The surgeries were successful and the family applied for funding from the NHS to take Camille to the USA for an advanced form of radiotherapy, called Proton Therapy.

 

The family moved to Jacksonville in Florida for 3 months in 2011.  Over this time Camille received high-dose radiotherapy to her brain.  Camille was anethetised every day, her head and body bolted to a table to ensure the beam was precise and ensure no other areas were damaged.

 

In June 2012 Camille had her first post-radiotherapy scan, there was no evidence of disease.  Camille was scanned again in October with no change.  Camille will now be scanned every 6 months, she is not cured, not at the moment.  The family have another 5 years to wait to hear the words 'remission', until then they live in fear of a relapse, but are also very optimistic that Camille has been given the very best chance at a bright and wonderful future.