The big meeting

We had a very good meeting with Dr. Pressey today. He puts me in a list kind of mood because he is very precise and very thorough, so here goes....

The facts at this point:
1. Paul does not have cancer.
2. He has an EXTREMELY RARE benign tumor on his right collarbone classified as "nodular fasciitis"
3. One of the worst things about these tumors is that----as rare as they are----they are commonly misdiagnosed as malignant tumors. There have been several cases in which people have undergone chemo and intense surgeries only to LATER discover it was fasciitis.
4. A week ago today, Paul had surgery and what was then believed to be the original entire mass was removed. The surgeon saw that it had grown "finger-like" shapes down onto his pectoral muscle, but saw nothing else.
5. HOWEVER, yesterday we had the CT scan and there is a very large (about the size of a golf ball, which is pretty freaking big when you only weigh 17 pounds!!) tumor present. Was this there a week ago in the surgery? Or did it grow within the last week? We don't know.
6. "Nodular fasciitis" tumors tend to grow very rapidly. They have the ability to reach their maximum size (which varies---we have no idea how big this thing could possibly get), then they start shrinking and are eventually absorbed by the body
7. HOWEVER, sometimes surgery is necessary.


OUR PLAN OF ACTION FROM HERE:
The CT scan yesterday gave the doctors a great look at this thing. They know exactly where it is now and how big it is. We will have an ultrasound tomorrow to get a baseline ultrasound look at the tumor. Then 4 weeks later, we'll get another ultrasound done so we can measure how fast it is growing......or, more hopefully, that it has decided to shrink. The best case scenario from here is that the tumor will start shrinking and disappear into the nether regions of Paul's body. The worst case scenario is that it will continue growing to the point that it is getting close to his windpipe and we'll have to have surgery to keep it away from there. If it continues to grow after that, we could be forced to have multiple surgeries.

THE AMAZING NEWS is that it is not cancer. We are not out of the woods yet, but the sense of urgency has been relieved.

We are so grateful and so humbled. It will take a long time to process what all has happened the past 2 weeks. More on that another time.

Thank you again for your kindness, your incredible friendship, and your loving prayers. We are so blessed by all in our amazing network of friends and family.