Sister I'm sure it is so hard dealing with your son's illness and all its realities. Go easy on yourself. You love your child and the pain you feel stems from that love.

I have a son who when he was four months old, I found a large bump in his mouth. Turned out to be a tumor and it was removed and tested. he has something called juvenile xanthogranuloma JXR for short.

It is a wait and see thing and we keep hearing that he most likely will not have another but of course there is no guarantee. They also don't know a lot yet about this rare disease. We keep saying he has a disease with no symptoms at the moment.

I am glad that you were able to talk to T and then that got you through figuring things out for yourself. I'm proud of you