Just received a letter from GOSH summarising our latest appointment with DS2 & his consultant.
At the top of the letter, listed under 'Diagnoses:'
- Lesional focal epilepsy (right extended temporal lobectomy Dec 2009, pathology dysembryoplastic neuroepithelial tumour)
- Developmental delay.
As is the way with these things, the letter does not explain what is news to us. We are fully aware of the developmental delay and he is progressing nicely in this area and we have a plan in place for the forseeable future re education, etc.
But the pathology bit, no mention in the letter, no mention at the appt.
Now having looked it up, my initial Google-impressions is this really makes no practical difference to how we continue to live with Henry (or what we do regarding my current pregnancy/future pregnancies).
It is referred to as a form of cancer - gulp - but radiotherapy/chemo is NOT recommended, in fact surgery is the recommended & most successful option, and the outcomes over time seem to be incredibly successful regarding future seizures (which has been at the back of my mind for DS2's future).
I think I may have to phone the consultant's secretary just to let them know this is a surprise to us and could she discuss any implications over the phone with me as it will play on mind forever otherwise.
Not really sure what I expect from this post, just wanted to write it down, maybe hear from anyone who's even heard of it.