The Telethon Adventurers

Born: 8 February 2005

Diagnosed: 29 April 2010

In Gods arms: 15 August 2010

In February 2010 Emily started to lose her hearing. Over the next two months she went from being a perfectly healthy little girl to one who suffered "night terrors, vomiting and malaise and eventually total hearing loss. The week before her diagnosis she started to suffer an altered gait and her vision declined. On the day of her diagnosis Emily fell and hit her head and I took her to PMH Emergency where I planned to stay until she was given a thorough examination. A very astute Triage Nurse immediately recommended a CT scan where a lesion in Emily's brain was discovered. We were admitted that evening and an MRI on the 29 April confirmed diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG).

This is an inoperable brain tumour (due to it's consistency - like pepper grains in jello) and also doesn't respond to any currently known Chemotherapy.

Emily was placed on steroids to reduce brain swelling and aid CSF drainage, which saw a return of her hearing. Ironically Emily's optic nerve had suffered irreparable damage due to the pressure and she lost her eyesight.

Emily underwent 36 radiotherapy sessions, all under General Anaesthetic. This is the only therapy currently available to extend life as DIPG is terminal.

Normally following radiation, the DIPG shrinks and sufferers enjoy 6 to 18 months of a quality life. In Emily's case, there was no such "honeymoon period".

Following radiation Emily's tumour shrank, however due to her non-response a further MRI showed unexplainable lesions covering the surface of her brain. As a result of these lesions Emily suffered repeated petit Mal Epileptic seizures.

Emily lost consciousness following these seizures and was placed in Palliative Care on Ward 3B. Three weeks later on Saturday 1 August Emily opened her eyes and said - "I want my Mummy". This day was spent talking and laughing with Emily, feeding her ham and cheese and ice-cream! Staff from the Ward crowded around her bed unable to believe this courageous, brave little girl.

That night Emily went to sleep and once again lost consciousness. Emily stayed with us for a further two weeks listening to her Mum, Nana and favourite Aunties tell her stories and sing her favourite songs. She passed away peacefully surrounded by her family early on Sunday 15 August, the Holy Feast day of Our Lady