Update 6/10/16

Trying to briefly summarize yesterday & today. It's so much and overwhelming.

Two more teams on board (pulmonary & rheumatology again) making it 6 groups working on Cole's case.

Pulmonologist - researched, pulled articles, consulted with others. We're lucky there's a pediatric pulmonologist here as there aren't many in the country & some states have zero. The one coming on board next week too is the Chief and came from Texas Children's Hospital (one of top children's hospitals). We are fortunate to have any, especially two, pediatric pulmonologists working his case as well as them consulting with others in their field.

Pathology report shows maybe not the necrotizing pneumonia, they saw some other kind of cells there like ghost tumor cells. But can't rule out the pneumonia for sure. That's a brief summary of the lengthy information. Basically there's more confusing info they can't exactly discern.

They're all leaning toward either pseudo tumor or inflammatory myofibroblastic tumor (IMT for short). IMT's are extremely rare in adults let alone children so it's astonishing to them he may have that. Need to wait for the second opinion pathology review they sent to a specialist at Harvard. After that they may send to St. Jude's. Again, they can't discern which it is right now based on what they have. Several tests and reviews will likely take a week or more to get back.

HEMOC is now leading the charge since it is likely tumor stuff. 😔 Pulmonary also crucial since it it lung issue, and he may lose part of his lung depending treatment/surgery..we don't know. His body is so inflamed it's dangerous to do some things right now. And he's still spiking fevers.

They want an MRI to check out the other tissues from brain down to pelvic. Also still can't rule out infection so Infectious Disease division is still crucial as well because he may have both tumor and infection. They can't tell yet.

Rheumatologist is reviewing and will order some bloodwork to explore the group of diseases HEMOC doctor mentioned, but it's unlikely they'll be positive. But covering all bases to make sure.

Soo..in a nutshell, he is still a mystery to everyone and whatever he has is so rare it's made it difficult to diagnose. But we feel everyone is collaborating, consulting others in their specialties at other places, and trying to move as quickly, and safely, as they can.

It's been made clear Cole has a very long road ahead of him regardless, and we don't know what that path is yet.

Continued thoughts and prayers are greatly appreciated from everyone.