Alannah is a happy, bubbly 4-year-old from Killorglin, Co. Kerry. Alannah lives with her dad Andrew, who I used to work with back in Ireland, mom Geraldine, Aunty Caitlin and baby brother Adam. She goes to preschool and loves building lego, going to the beach, art, glitter and all things unicorn!
When Alannah was 5 months old her parents noticed marks on her body called cafe au lait stains. Cafe au Lait stains are a type of birthmark characterized by flat patches on the skin, which can be indicators of an underlying illness.
In January 2019, aged 2 Alannah was diagnosed with Neurofibromatosis Type 1 (NF1), a condition that can cause benign tumours to grow on nerve tissue.
That summer Alannah began feeling dizzy, having falls and wobbles which became more frequent. Geraldine contacted the family GP, who sent Alannah to Cork University Hospital where an MRI found a bilateral optic pathway glioma (slow growing tumour). The tumour was blocking part of Alannah's brain and caused hydrocephalus, a condition where an accumulation of cerebrospinal fluid (CSF) occurs within the brain.
Alannah’s parents were told that an ambulance was booked to bring Alannah to Temple Street Children's Hospital immediately. A biopsy of the tumour was taken and thankfully it was benign.
A few days later Alannah underwent her second brain surgery and had a VP shunt fitted, to help alleviate the pressure caused by the hydrocephalus. Alannah attends physiotherapy and occupational therapy to help with the difficulties the brain tumour and hydrocephalus have caused.
The decision was made to monitor the tumour with regular MRIs and eye exams every 3 months in Crumlin.
Alannah is under the care of a team of specialists in Crumlin Children’s Hospital including an oncologist, ophthalmologist and the neurophysiologist, her favourite doctor, who performs an EEG (electroencephalogram). The EEG is a test that detects electrical activity in the brain.
On Alannah’s last visit to the eye clinic the doctor noted a decline in the vision in her left eye. The eye tests and EEG were repeated. It was decided that Alannah would start chemotherapy for 70 weeks in the hope that it will prevent any further damage to her eyesight.
On the 14 May 2021 Alannah had a port fitted that she has christened Polly. The port is used to administer chemotherapy, take weekly bloods and give antibiotics if needed. On 15th May 2021 Alannah had her first dose of chemotherapy.