Health Status: It’s Complicated.

Just wanted to update everyone on Billy. His situation is complicated, but we are heading in the right direction 😊

The Doctor finally called today with the pathology results from upper/lower endoscopy. They didn’t see any new neuroendocrine tumors in his stomach, the colon “polyp” they removed was just scar tissue, and other than some inflammation from chronic autoimmune atrophic gastritis, he said that overall everything looked ok. If there are no new problems, will go back to the GI Doctor in March and discuss when he should follow up with another endoscopy and colonoscopy to monitor the conditions.

We recently met with a surgeon about his parathyroid issues. We also discussed the possibility of removing an Adrenal gland in the future. She seemed to be very concerned and said that she believes that he does have a Pheochromocytoma that has just not progressed enough to confirm. She told us that she is really interested in finding the root cause of all of this and has studied his case at length. She confirmed that his situation is really complicated with lots of factors to consider. Due to the complexity, they want to wait until after he’s had the genetic testing done before they do any surgery. If he does have one or more of the gene mutations, it would likely change what they decide to do surgically. 

We have an appointment to meet with a genetics counselor towards the end of February to discuss which genetic testing should be done. The surgeon said they specifically requested them to check for MEN1 & MEN2 (for Multiple Endocrine Neoplasia), but they may add others as well. So, it’ll likely be several months before we have enough information to make a plan on the best way to proceed. 

We are so thankful for all of your prayers and know they are being answered. We seem to have a surgeon that has a passion for neuroendocrine and Adrenal issues and it feels good to know that she has taken a special interest in his case. She understands the hidden potential dangers of MEN and is considering the entire situation before deciding what to do next. We have tried numerous times over the last 2 years to get them to do the genetic testing because if he has certain mutations, it changes so many things about treatments, surgery, and screenings. They kept telling us it was expensive and unnecessary. Now that his case has been assigned to the surgical department, she understands that he has multiple areas of concern and that could mean he has one of the MEN mutations. If so, she needs to know that before surgery to make a plan to deal with whatever they find when they get in there to look at his parathyroid, as well as how they proceed with the potential of a Pheochromocytoma. So, it’s a huge answered prayer that she requested the genetic testing and we will have the ability to make more informed decisions based on the results. 

We praise God that no new significant concerns were found on the most recent pathology report!! With everything else going on, that is a huge relief. He continues to bless us more than we will ever deserve! 

Thank you all for your love, concern, and encouragement over these last few years. We truly cherish your prayers as we continue to navigate this complicated web of health issues. 

Today is a precious gift, and we are so grateful for it ❤️

UPDATE: PRAISE GOD! All of the genetic testing they did came back negative! We are so thankful. We still don't have many answers, but this is a huge answered prayer!

“We should certainly count our blessings, but we should also make our blessings count.”

—Neal A. Maxwell