November 20, 2008
Hello to our family, friends and new friends!We met with Dr. Wagner today and had a very good discussion about numerous concerns that Mike and I both had. The first concern was the "spot" on the liver. It is a very tiny spot. It is 6mm. Do we know 100% for certain that it is NOT neuroblastoma...no. Do the 3 docs, including Dr. Wagner, who looked at this on the CT scan think this is a NB spot...no. Are Jody and Mike concerned with the "spot"...yes. But, that does not mean that we are fearful. The plan of action right now, is to watch it on the next set of scans which will be in Feb. The fact that it did not glow on the MIBG scan, and that Roman is doing very well, and labs looked AWESOME, and the fact that NB does not just come back like that on the liver only, Dr. Wagner said with confidence "that would be extremely out of the ordinary for a NB relapse." So, with all of that being said, we are concerned because we know it's there, that's it. Other than that, we will not be worried about the spot at all. We also discussed relapses and the time they most occur. Dr. Wagner said, "he wished he could give us a time frame and tell us that a relapse would not happen after a certain time, but he can't". And we know that. However, he did say, the most relapses occur in the first 2 years after being diagnosed. He told us that from here on out, there will probably NOT be a time where Mike and I will not be worried or concerned with SOMETHING going on with Roman. We will ALWAYS be concerned about every little thing going on with Roman.  And, we know that too. We talked alot about re-immunizing Roman and the shot schedule. Dr. Wagner is such a magnificent doc. We hold him with the highest respect. Mike and I have things to talk about with the shots schedule over the next 2 years. Roman is not allowed to have any "live" viruses for 2 years post transplant. But we do have some shots he can have now, which he can get from the pediatrician finally!!!! HOORAY! The pediatrician's office can't wait to meet Roman. They will soon get to meet him because he got the first part of the flu shot today in his thigh and in 4 weeks he has to go back for the second part. And, will be having it at the pediatrician's office. For those of you who don't know, Roman and Sheridan's pediatrician died last year while Roman was in transplant. We miss you Dr. Michaels so much. Dr. Harmeling is the kids new doc and she is very nice and we are happy that their entire....
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