April 19, 2018

Melanie again...this one is kind of long (sorry)
I wanted to sum up what all is going on from a medical perspective.
Yesterday we spent all day at MD Anderson. We met with Mark’s endocrinologist, one of the few paraganglioma (PGL) specialists in the world. He started his research in 2008 and has had nearly 800 patients in that time with this condition. He’s definitely our guy and seems uniquely amazing. His goals at this time are to rule out the following:
1. Metastasis—which is rare but possible.
2. Secretory nature—some PGLs secrete adrenaline and other hormones which make them more temperamental.
3. Genetic cause—about 30% of PGLs are associated with a genetic syndrome which if this is the case, would have long term implications for Mark and our kids would need to be tested too.

So what he ordered to evaluate for these possibilities are
1. CT scan abdomen and pelvis performed Wed night and a nuclear scan (hoping to do the nuc scan in STL)
2. Resting blood tests to look for catecholamines in Mark’s blood
3. Chromosomal testing (more blood tests)

We also met with Dr. Rice, cardiothoracic (CT) surgeon. He agreed to do the surgery. It will be “open heart” and his goal is to remove all of the tumor. Although he feels it’s not likely, there is slight (5%) chance the tumor could be aggravating the major vessels including the aortic arch and the carotids that sprout from the arch. Due to this possibility, he will have to have an aortic specialist on standby. Also, he was honest with Mark and explained that there is a minor chance the vocal cord nerve will be damaged with the surgery. This nerve is running near or through the tumor at the current time. Not the best news for a vocalist. Because of this Mark had to have a baseline eval with a speech pathologist who looked at his vocal cords. That was so interesting. Dr. Rice ordered more CT scans to check blood flow to the tumor and to also make sure Mark has healthy open arteries to the brain. Those scans are happening Thursday afternoon/evening. Surgery will likely be at least one month from now.

So again we wait...

Our prayer requests at this time:
1. No metastasis!
2. No genetic component
3. Thanksgiving for doctors and health professionals who dedicate their time to these rare conditions
4. Thanksgiving for all our friends and family helping us out SO MUCH!!

God is good all the time.