Emilys Fight against her Rainbow (Brain Tumour)
Donation protected
Dear little Emily is truly inspirational. She has had a rough few years, This has led us to create a space for those wishing to contribute in some way. Your assistance will provide relief for the family to allow them to take time to spend with Emily when she needs them the most.
This is Emily's story so far:
(Written By Allison (MUM))
On October 26th 2018 we received the news that our 5 year old daughter had what the doctors believed to be a slow growing low grade brain stem tumour.
It had been a journey to this point with very mild symptoms. We had noticed in April 2017 that she had trouble with her left leg and balance as well as speech issues. At this time Emily was diagnosed with a paralysis of her left palate.
The Drs at the time thought it was to do with her neonatal journey as she had been very ill when she was born. At that time we moved to Sydney for my husbands dream job. In April 2018 her paediatrician noticed a tremor and ballistic overshoot in her neurological exam and decided to investigate further. We were linked in with a neurologist who was very confident this was nothing to worry about. Emily had her first MRI on the 24th of October 2018. The phone call on the 25th of October will remain to be the most heartbreaking call. In the middle of a park in Ryde Sydeny the neurologist informed me they had found a leison and that we urgently needed more scans.
The next day we received the official diagnosis. We entered a watch and wait period. During this time we made the decision to move home to Geelong. We linked in with RCH and continued to be monitored. In October 2019 Emily's nerve function deteriorated. she now had trouble swallowing often chocking, she needed CPAP for sleep apnoea due to her tumour and her Left vocal chord was paralysed. Her neurologist and neurosurgeon referred Emily to neuro oncology. After a FPET showed unfavourable surgical pathways for biopsy we started a 52 week course of vineblastine. We are 20 weeks in. This is not an easy path to navigate and we know this isn't a magical answer they have told us that. But Emily is responding to treatment and has had function return to her palate and her neurosurgeon informed us today there has been a small amount of shrinkage which is amazing. Emily will live with her tumour she calls rainbow for her lifespan. The doctors have been frank that she will have continual watch and wait and treatment over her life. There is no surgical option so chemotherapy will be utilised to halt rainbow's growth when needed.
This is Emily's story so far:
(Written By Allison (MUM))
On October 26th 2018 we received the news that our 5 year old daughter had what the doctors believed to be a slow growing low grade brain stem tumour.
It had been a journey to this point with very mild symptoms. We had noticed in April 2017 that she had trouble with her left leg and balance as well as speech issues. At this time Emily was diagnosed with a paralysis of her left palate.
The Drs at the time thought it was to do with her neonatal journey as she had been very ill when she was born. At that time we moved to Sydney for my husbands dream job. In April 2018 her paediatrician noticed a tremor and ballistic overshoot in her neurological exam and decided to investigate further. We were linked in with a neurologist who was very confident this was nothing to worry about. Emily had her first MRI on the 24th of October 2018. The phone call on the 25th of October will remain to be the most heartbreaking call. In the middle of a park in Ryde Sydeny the neurologist informed me they had found a leison and that we urgently needed more scans.
The next day we received the official diagnosis. We entered a watch and wait period. During this time we made the decision to move home to Geelong. We linked in with RCH and continued to be monitored. In October 2019 Emily's nerve function deteriorated. she now had trouble swallowing often chocking, she needed CPAP for sleep apnoea due to her tumour and her Left vocal chord was paralysed. Her neurologist and neurosurgeon referred Emily to neuro oncology. After a FPET showed unfavourable surgical pathways for biopsy we started a 52 week course of vineblastine. We are 20 weeks in. This is not an easy path to navigate and we know this isn't a magical answer they have told us that. But Emily is responding to treatment and has had function return to her palate and her neurosurgeon informed us today there has been a small amount of shrinkage which is amazing. Emily will live with her tumour she calls rainbow for her lifespan. The doctors have been frank that she will have continual watch and wait and treatment over her life. There is no surgical option so chemotherapy will be utilised to halt rainbow's growth when needed.
Organizer
Kristie Fiorillo
Organizer
Lara VIC
