@jvohnoutka Welcome to Mayo Clinic Connect! I’m sorry that you came to MCC because your son has this bad disease. But all the members here will do their best to help you! You might also wish to check the Caregiving discussion group as your son may need your help with everyday things. Is your son married with children? Remember, we are here 24/7/365 to answer your questions. Please ask the members here anything and everything==we will try our best to answer.
You might also want to try this link to National Organization for Rare Diseases:
https://rarediseases.org/rare-diseases/lymphomatoid-granulomatosis/