mpalmer118
03-01-2007, 08:19 PM
hello all,
first post.
My daughter, Constance, (6 years old at the time), was diagnosed with a Brain Tumor the size of a golf ball, (supratentorial Ependymoma), back in the dark days of December 2001, (boxing day to be precise), which turned out to be malignant.
Radiotherapy followed, (GRRRRRRRRRRR), which did nothing other than keep the radiologist in a job and left my daughter with thinning hair and cognitive difficulties to overcome. TWO further surgeries followed resulting in complete surgical resection. Up to Sep 2006 clear scans. Then an abnormality appeared on the MRI which was left to see how it progressed. November 2006 and the general consensus among the consultants....probably a Cavernoma. Still the watch and wait strategy was employed until it haemaoraged a month ago. Even then we were kept in the dark...no worthwhile information or discussion. "Keep an eye on it and come back for a scan in a month" unfortunately we didnt have that long and 2 weeks ago it bled again. This time a clot had formed and surgery is too dangerous, especiallly where the cavernoma is. Our daughter, (now 11), is amazingly almost symptom free at the moment but as you all know its life on a knife edge and as i write this we are contemplating a trip to A&E because she has a slight headache and is drowsy. Which, according to a registrar is no real cause for concern !!
Having somehow found my way to this site i am hoping that some of you out there can give me some guidance as to the questions i should be asking?
The fact that its a 'side effect' of radiotherapy, (obviously something we were never informed of), is, at the moment, besides the point but may become an issue down the line.
Looking forward to some dialogue
sincerley
Liam Foley father to Constance 11, Fabian 9
__________________
"Truth is ever to be found in the simplicity, and not in the multiplicity and confusion of things"
-Issac Newton-
first post.
My daughter, Constance, (6 years old at the time), was diagnosed with a Brain Tumor the size of a golf ball, (supratentorial Ependymoma), back in the dark days of December 2001, (boxing day to be precise), which turned out to be malignant.
Radiotherapy followed, (GRRRRRRRRRRR), which did nothing other than keep the radiologist in a job and left my daughter with thinning hair and cognitive difficulties to overcome. TWO further surgeries followed resulting in complete surgical resection. Up to Sep 2006 clear scans. Then an abnormality appeared on the MRI which was left to see how it progressed. November 2006 and the general consensus among the consultants....probably a Cavernoma. Still the watch and wait strategy was employed until it haemaoraged a month ago. Even then we were kept in the dark...no worthwhile information or discussion. "Keep an eye on it and come back for a scan in a month" unfortunately we didnt have that long and 2 weeks ago it bled again. This time a clot had formed and surgery is too dangerous, especiallly where the cavernoma is. Our daughter, (now 11), is amazingly almost symptom free at the moment but as you all know its life on a knife edge and as i write this we are contemplating a trip to A&E because she has a slight headache and is drowsy. Which, according to a registrar is no real cause for concern !!
Having somehow found my way to this site i am hoping that some of you out there can give me some guidance as to the questions i should be asking?
The fact that its a 'side effect' of radiotherapy, (obviously something we were never informed of), is, at the moment, besides the point but may become an issue down the line.
Looking forward to some dialogue
sincerley
Liam Foley father to Constance 11, Fabian 9
__________________
"Truth is ever to be found in the simplicity, and not in the multiplicity and confusion of things"
-Issac Newton-