Thank you to those who have reached out to let us know that they are praying for PJ, and who are thinking good thoughts.

    Last week was busy, with a CT scan and appointment with one of PJ’s oncologists on Monday (5/14), a liver biopsy on Tuesday, and a new patient appointment with a sarcoma specialist at MD Anderson on Thursday, before the big storm Thursday night.  We are blessed that we made it through the storm ok, mostly because we have a whole house generator for PJ, because his body does not properly regulate his body temperature.  The rest of the area was without power until Monday morning.

    This week has been a waiting game, which is difficult to say the least.  Today PJ had a phone appointment with Dr. Ratan, at MD Anderson, who confirmed that the liver biopsy shows an EBV smooth muscle Sarcoma in PJ’s liver.  There is also a mass in PJ’s small bowel, found in last weeks CT, which can not be biopsied safely, so it will be treated as the same sarcoma as the liver.  Without too much detail, we are now waiting to find out if PJ can get into a pediatric T-cell trial at MD Anderson. If the trial isn’t doable, the doctor will reach out to the drug company that is involved with the trial, to try to get a compassionate exception for the treatment.   If all else fails, PJ will have to begin chemotherapy, which would not cure the sarcoma, but would possibly shrink the sarcoma to extend PJ’s life.

    As always, we need tons of prayers, good thoughts, vibes and whatever else you believe will help, as we wait to find out what is next.  And, if you are so inclined, please say a prayer for patience while we wait.

Edited and approved by PJ