Desmoid Tumor, round 1

I want to document our journey with this rare form of tumor that we first discovered last November. I want to trace and retrace the unexpected twists and turns of grace and provision and miraculous moving of mountains we have seen so far and expect to see more of as we move forward.

Last November a good friend of the family, our adopted brother Gazi was around for dinner and noticed a bump on Elsa's nose. I had noticed something not right myself a couple days before that but had dismissed it thinking it was just a bit of extra baby fat. We moved forward to ask our family physicians what it might be and asked doctors in the US too. Most seemed to think it was a cyst that if on an adult could be taken care of in the clinic. We went on to the main hospital to see what they could do and they called for an MRI.

Elsa had to be drugged to sleep for the procedure and she remained under the influence (sleepy or seemingly drunk) 24 hours at least. The results were that it was likely a non-malignant tumor that would involve a complicated surgery because it was in Elsa's maxillary sinus.

We went back to the main hospital for advice and we were directed to go right away for a biopsy by one doctor and told by another they didn't want to touch the case. In hindsight, the biopsy probably would have been wise, but we were afraid of Elsa being cut open in a hurry and by someone who didn't know what to do with such a small child. We elected to try to find the best surgeon we could to remove the tumor.

A couple of weeks later we found ourselves waiting for the recommendation of a maxillo-facial surgeon at the Italian private hospital before heading off to consult with another maxillo-facial surgeon at the Greek hospital. It became abundantly clear where we were going to be better cared for when we got to the Greek Hospital and met their Greek surgeon who flies in for surgeries every few weeks. Dr Lazarou was someone we felt comfortable with right away and we got Elsa ready for surgery that afternoon.

The surgery was over quickly and Elsa recovered amazingly fast. We went home relieved, yet knowing that our fight wouldn't be over till a biopsy was run on the tissue samples.  Within a month I think we had the official word that the tumor was aggressive desmoid fibromatosis which was so rare no-one really knows a standard way to handle this, but the literature had 10 cases mentioned in total, for which surgical removal of the tumor was sufficient in most cases so we felt at peace.