Monday Night--Jan 4, 2010

The much anticipated word from Dr. Coffin, at Vanderbuilt, came late this afternoon.

It was a 5 page consult consisting of reports of what Mark DOESNT HAVE!!

No idea of what this mystery disease process is....STILL!!!

This Dr., whom we all had high hopes for, has deferred the diagnosis burden back to Primary Children's staff!

As you can imagine, we are devastated and discouraged. The oncologists think it probably isnt a malignant process, although.

The plan now is to go back to square one and get all the "Teams" to come back and re-evaluate him. Infectious disease, Imunology, Rheumatology, GI,..all of those teams that originally looked at him.

Meantime, the struggle to keep Mark "comfortable"--ie. out of pain, less-nauseated is also a difficult task. He still has the NG tube down his nose/throat, which causes constant irritation. His poor abdomen is still severely distended from the ascites (fluid accumulation). And he is still tangled in multiple IV's as they try to keep his pain controlled and his nutrition going.

He cant walk from his weakened condition. He is quite frail and exhausted all the time. It is a huge undertaking just to try and sit up..in bed!

We continue to pray for answers and appreciate everyone concerned for our dear Marky.