@mmccarter62 — I can only imagine how your son's new diagnoses are affecting you both. You both are probably going through all sorts of emotions at this moment — It is so scary to know that something may be or is terribly wrong with our children (or grandchildren, as in my case). I know I felt the orthopedist had just punched me square in the chest, when he started with the words "I don't want to alarm you, but … " and the word "Oncologist" was the next punch. I felt as if I couldn't breath!
You are on the "right track" in seeking advice from other centers such as the Mayo Clinic. I would certainly encourage you to get information on how to reach them by phone and e-mail. Others have already given you information about Mayo. However, if you are interested in other Medical Centers, go on each of their websites; you will find they have a "coordinator" for care and consults. That's where I would begin.
Also, inquire about on-going or future Clinical Trials and see if your son is eligible for such programs. How to Search:
Learn how to use ClinicalTrials.gov search features to find studies:
The National Cancer Institute (NCI) is the U.S. Government's principal agency for cancer research and training. Most other U.S. Government agencies that conduct cancer research, such as the U.S. Department of Defense and the U.S. Department of Veterans Affairs, do so in partnership with NCI. https://www.cancer.gov/
Visit NCI's Clinical Trials page: https://www.cancer.gov/about-cancer/treatment/clinical-trials?redirect=true
to find information on cancer studies, read about noteworthy clinical studies, find resources for researchers, and browse the results of clinical studies by type of cancer."
"NIH Clinical Center
The NIH Clinical Center in Bethesda, MD, is the research hospital of NIH. https://www.cc.nih.gov/
The NIH Clinical Center website provides information for potential participants, their families, and doctors about participating in clinical studies at the center."
I hope above information may help you to focus your efforts. If you need help, let me know and I will be happy to help you, if I can.
Keep strong! –Dee