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Joey had PET scans monday. A PET scan will show the difference between active disease, dead tumor, and scar tissue. He also had a CT done at the same time. There were only 2 things I wanted to see on the PET scan. A hot spot in Joey's pituitary gland which would tell me its functioning correctly and he has not developed Diabetes Insipidus and no hot spots anywhere else which would tell me there was no active disease.
The doctor came in and sat down and told me he wanted to discuss the PET CT results with me.
I prepared for the worst at this point. The last time a doctor sat down and said they wanted to discuss results was the day we were told Joey would go to salvage.
He then tells me that the CT scan picked up tiny nodules in his lungs less than a cm each. However these are unchanged from last scans. Last scans we determined these were scar tissue. But the PET scan showed no hot spot in these spots, so this confirmed these are JUST scar tissue. He is still No Active Disease... solid remission.
So at this point I am thinking he lost the hot spot in his pituitary. And I am preparing to talk about DVAP, which is a hormone used to treat DI.
I asked, very weakly "What about his pituitary, please tell me this showed as a hot spot?"
And he replies "Mrs. Born, your son is fine, the hot spot is still there. Today I am blessed to be able to tell you that we believe he has beat this disease and will not have any major lasting effects of histiocytosis."