On October 2nd, 2023, Our 16 year old daughter Brooke had a seizure which was completely unexpected.
We headed to A&E by ambulance and spent the night under observation. I had a gut feeling something was off so I pushed for a CT scan even though the consultant mentioned that it was “probably nothing to worry about.” We waited another day for the CT and the results showed a large tumour on Brooke’s brain, after an emergency MRI, she was transferred to Beaumont Hospital where she underwent her first surgery on the 13th of October.
The surgery was very successful and Brooke’s recovery was amazing. She then started back at school just before Christmas. However, at her 3 month post OP, MRI and appointment, it was decided that a second surgery was needed to try to remove the remaining tumour.
Just before her second surgery, they had discovered that Brooke’s tumour was a Grade 2 Extra-Ventricular Neurocytoma. This tumour is extremely rare with only 8 recorded cases.
So, on the 4th of April Brooke had her second surgery and it went extremely well! She had a speedy recovery and took part in the VHI Women’s Mini Marathon and helped raise some much needed funds for Brain Tumour Ireland with a little army of family and friends!
When Brooke returned to Beaumont for her follow up appointment, It was decided on that Proton Radiation Therapy would be the best option to help eradicate remaining tissue of this rare tumour.
Unfortunately, this treatment is not available in Ireland, this is when our clinical nursing team in Beaumont Hospital put us in touch with The Gavin Glynn Foundation, where from the very first conversation could not have been more helpful, John & Jayne took away all of the overwhelming stress of “Where do we even start”
Brooke had to travel to Essen in Germany for an initial assessment and then again for the subsequent 7 weeks of treatment TGGF took all of the stress away of trying to arrange flights accommodation for us in a strange city we could never put it into words just how amazing this Foundation is!
Brooke truly is our Little Pocket Rocket she has taken everything from the initial diagnosis the two surgeries and then the Proton Radiation in her stride and never once has she complained or said why me she is very much of the mindset “Why not me I can do this I can fight this and I will be ok! “ and we as a family will always think how Lucky we are that Brooke only had that one seizure on the 2nd of October 2023! And will be forever grateful to Brooke’s surgeon Kieron Sweeney, his team and of course all of the nursing staff at Beaumont Hospital! whom we will have a long standing relationship with as they continue treat and monitor Brooke and of course all of the staff at the WPE Essen Germany.
As for The Gavin Glynn Foundation Thank You two little words that will never ever be big enough. Xxx
