Today was a long and emotional day for us as parents.
We had to make a decision for our daughter today, will we try to preserve some vision or do we go for better quality of life?
The tumour is very close, if not pressing on the Hypothalamus in the brain.
This section of the brain responsible for the production of many of the body’s essential hormones, chemical substances that help control different cells and organs.
The hormones from the hypothalamus govern physiologic functions such as temperature regulation, thirst, hunger, sleep, mood, and the release of other hormones within the body. This area of the brain houses the pituitary gland and other glands in the body.
Although this portion of the brain is small in size, it is involved in many necessary processes of the body including behavioral, autonomic (involuntary or unconscious), and endocrine functions, such as metabolism and growth and development.
Genique is already presenting some issues in the areas of thirst, mood, behaviour and regulation of body temperature.
If we decide to leave the tumour and continue with current treatment (chemo), it will take her vision and her health. If doctors remove the tumour it can cause blindness but at least the tumour will be away from the hypothalamus.
We chose better quality of life.
So, the plan is to remove 80-90% of the tumour but by doing this she will loose total vision in her one eye :(
Doctor will leave some of the tumour to preserve some vision in the other eye.
Her surgery is scheduled for tomorrow morning at 9am Sydney time.
We have no idea how long the surgery will be and we will post updates on Facebook as soon as possible.
Through it all Genique has still a fantasitc sense of humor - watch her video asking mum to do her hair (love that kid!).
Sincerely,
The Beukes family