My Son Has Brain CancerDear all,
I'm looking at the page and wandering were to start.
Firstly, I'm feeling pretty good. I've started a new job mid January. My employer seems quite happy with my work to date and my position looks good for on going long term employment.
My son seems to be coping well, however there are few on going health issues that we will need to deal with. He has been diagnosed with 2 germinoma cell brain tumors. A 3cm tumor in the fluid cavity of the brain which was sitting over the top of the spine blocking the circulation of spinal fluid and slowly building up pressure in side his brain which was relieved by an emergency 3rd ventricular operation. The second smaller tumor was only found as a result of the first. The smaller tumor is in the same vicinity of the pituitary gland and had done most of the on going damage. As a result he now had diabetes insipidus, a form of diabetes that causes the body to loose excessive amounts of fluid. Early last year we noticed that he was drinking a lot, this was obviously related to his diagnosis, but wasn't picked up with previous blood tests. This also has an impact on his potassium and sodium levels. I addition his hormonal development leading up to puberty is uncertain, we'll worry about this if and when it arises.
He's finished his chemo and radio therapy. As a result radio therapy combined with his hormonal development, there is a chance that he will not grow to his full potential height, the tumors have responded well to treatment and are now quite small. Emotionally he seems to be coping very well, he is always happy and is more concerned about everyone else. However he has developed turrets syndrome, apparently his psychologist suggest that this is the first case he's ever heard of that this has been brought on by a brain tumor. It seems that he is unaware of his internal stress level and it's started to show in this form.
My wife and I are trying to staying as positive as possible and all the family on both sides are helping out tremendously. Our whole family outlook has changed considerably. However I am concerned about how My wife is coping, outwardly she is strong and composed but now that I'm working, She has taken on all duties for My son's care. I'm trying to find ways of showing my support and take some of the load off her, but outside of my work hours there is not a lot left for me to do apart from administering his medication which I find extremely confusing.
My daughter is coping well now that she is spending more time with us after getting out of hospital. Getting her to do homework is a bit of a challenge.
We are all taking 1 day at a time and trying to stay positive.
Previously on to of all this happening. I have been dealing with and continue to deal with depression and compressed L5 disc I my spine. My anti depressants are making my muscles and joints extremely sore.
I'm feeling, totally spent.