Hello
First off I am very sorry to read this. I havent been on this site in a while. I know all to well what you are going through. I have writen on this site before. My wife (34) had Cholangiocarcinoma. We discovered it while she was pregant with or son last 2-17-05. I lost her on 7-9-05.
Make sure you have got lots of information as I can see you are trying to do. If they can remove the tumor and chemo treatments he has better chances. But there is a chance it could come back. If that is not he case as with my wife all I can say is prepare yourself and family.
I made it my job to make sure that my wife had good food and little snacks. I found that homemade protein shakes, with weightgain powder and fruit were good to keep the weight on. I blended it with Kerns juice. Chemo makes you not want to eat so small easy to swallow meals helped her. But the cancer itself is a protein eating cancer. He will lose weight even if you are doing everything. So I really tried to made meals and shakes that had lots of protein.
Above all I made sure that she had a goodtime and stayed positive. I wanted to make sure that she had time with me and our son.
Our goals, which I think are extremely important to make, was to prolong her life as along as she was comfortable. For us we felt we could get a year cause she was so young. That wasnt the case. But her being at our sons baptism was a goal. And SHE DID IT! Another goal was to make sure that everything that needed to be done was finished and writen down way before her time came.
We also didnt want to be in hosptials cause we spent so much time there. Home is such a better place to be.
What type of Chemo is he on? Has it spread? With my wife we knew she had it but we were limited in what we could do as far as tests. So After his birth a cat scan had shown it had spread other places so surgery was out.
Again i am sorry to read this and dont want to paint a grim picture but you need to know what to expect. Doctors dont always tell you how or what to expect. You must be optimistic but still face reality. That is the only way I made it. Respond if you need more information.