Our beautiful little girl Èabha was diagnosed with an extremely rare type of Brain Tumour (CNS Neuroblastoma) in December 2022. Our world was turned upside down on the 7th December when we were told she had a cancerous brain tumour at the age of 3 and a half.
Éabha became unwell on the 16th October with a Temperature for a few days, the temperature resolved but she coughed up some Phlegm/Mucus. She was in good health for the next 2 weeks and then coughed up more Phlegm/Mucus.
Again, she returned to good health for another week and then started coughing up a lot of Phlegm/Mucus daily. We contacted the GP and they said symptoms indicated something viral.
Severe headaches had been complained of on some days in Pre School in these weeks but no headaches were complained of while not in school.
By Wed 23rd Nov Éabha had developed a temperature and I made an appointment to see the GP. She wasn’t happy with Éabha’s chest as there was a rattle down her left side. She also said her throat looked sore and prescribed Antibiotic.
The temp remained and symptoms had not improved so I rang the GP again to get a referral to the Hospital but as it was Friday evening there were no beds available. We Decided to wait until the morning to see if we needed to bring her to A & E. Éabha had improved on Saturday morning and Sunday and returned to our GP on Monday to follow up if her chest was clear. Temp returned while with GP and while chest sounded clear she ordered an Xray for following morning. After this appointment we noticed her left eye starting to turn inwards.
We Attended Bons Secours Hospital in Co. Cork Ireland the following day for Chest Xray. Full Bloods and a number of Viral swabs were also done. Results came back X ray clear, Bloods all exceptionally good and viral swabs all negative. We noted Èabhas Eye in Hospital and also while there she started to squint (left eye).
The Consultant was reluctant to do an MRI (due to potential risks with sedation if running an active virus). We were given his contact details to ring back in one week in hopes her symptoms had improved.
Still unhappy, my gut telling me there was something wrong, I made an appointment with the local optometrist, she diagnosed Papilledema in both eyes and she contacted the consultant in Bons Secours Hospital.
An immediate Appointment to attend for MRI was made for Wed 7th Dec where her Brain Tumour was diagnosed and we were referred to Temple Street Children’s Hospital in Dublin that evening.
Èabha underwent a successful surgery in Temple Street Children’s Hospital and commenced chemotherapy in Our Ladies Children’s Hospital, Crumlin at the beginning of January.
To date Èabha has endured surgery to remove the tumour, lumbar puncture, bone marrow aspirate, insertion of a central line in her chest, removal of central line due to infection, insertion of 2nd central line, 6 cycles of Chemotherapy incl 3 high dose cycles with stem cell rescue and daily injections.
She has had numerous blood and platelet transfusions, hospital admissions, numerous scans and anesthetics and daily medication.
She is about to start Proton Beam Therapy in Germany where we have to stay for 6 to 7 weeks, and it is here that The Gavin Glynn Foundation has been invaluable with not just financial assistance but all the practical elements of booking flights, accommodation, transfers, helpful advice to make everything as easy as possible for families. It has also meant we can all be here as a family.
Throughout it all Èabha has been incredible, she has shown her strength and determination. Her bravery has been nothing short of amazing and she continues to inspire us and make us so proud every day.
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