June 8, 2016. Update 2

The surgeon came by after speaking with the pathologist. Cole has necrotizing pneumonia/infection, but they cannot tell if something caused it, or it caused something else.

The pathologist is leaning toward Cole having an inflammatory tumor based on the cells he saw so far, but he won't commit to that for sure so he is sending it out to other specialists elsewhere for assistance. That takes time. He is a very experienced pathologist who actually retired but then came back to work so he has a lot of years/experience, so he has seen almost everything. He still wants to send it to other experts to review because he isn't certain what this is.

IF it is an inflammatory tumor, most cases have been benign and not malignant. What they cannot tell is, if it is a tumor, which was there first - the tumor which caused the infection or the infection caused the tumor. That's a big question they need answered.  

Until they know if it is an inflammatory tumor, they don't exactly know treatment. They do NOT want to do surgery again right now to remove anything because they would likely have to also take a part of his lung, and it's too risky with the pneumonia they don't want to cause more damage or infection. And they don't want to remove part of the lung if they can avoid that of course. They can't tell if anything is actually attached to the lung at this point. If it's a tumor, he'll likely need surgery again at some safe point.

They need more information to figure out how to tackle the inflammation as well. That is key because that's what's causing so many difficulties.

So right now we wait for infectious disease team to explore antibiotic treatment changes, if any.  HEMOC will evaluate once they get pathology results so unfortunately we still need their service (yes it's good for them to evaluate, but bad that we still need hematology/oncology doctors involved). So for now he will likely be transferred to a general pediatric team while we wait. And we don't know how long we'll stay in the hospital.

Yes, everything is still so confusing and they STILL don't know exactly what is wrong or how to treat.  So we wait.