Well we are still in the hospital for the next few days. Why you ask? We’ve conquered the fevers and overcome the high blood pressure. The blood engraftment studies have come back and shown some good results. However, we can’t reduce the amount of diarrhea she is having. After two days of no food or water, her stool output is the same. Conventional wisdom is pointing to graft versus host disease (GVHD). GVHD is when the new cells see the body as the problem and attack it. Manifestations run the gamut from mild to very severe. The only way to diagnose GVHD of any kind is to biopsy. While it hasn’t been officially decided yet, we are just about positive that Rafi will undergo an endoscopy. Up to this point, Jackie and I have endeavored to never have Rafi undergo an endoscopy. And there have been those that have wanted to in the past. Sticking an endoscope up her anus into the lower GI tract, can’t be good for an EB child. But it’s becoming clear that we can’t avoid it. If she does have the particular type GVHD they are considering, then this is the type to have because an eight week course of steroids should treat it. Rafi has done so well through every stage of this journey that we can only assume she will do just fine through the endoscopy.
They’ve told us that no child goes through a transplant without a complication. Up to now, we’ve had no complications. It was too good to be true and we did have to expect something. So let’s hope that if this is the complication she has to undergo, then it be a mild case that can be treated easily with steroids.
Some have asked if we can expect her EB symptoms to subside now that engraftment has happened. The truth is we don’t know. We have to remember that Rafi is patient number eight. There just isn’t enough short term let alone long term data to know anything. It is our hope that Rafi’s new cells will create more collagen VII and allow the skin to bind to itself and for the mucousal membranes to be less affected. It is our hope that this procedure we put her through will be curative. We just don’t know and as of now, there is no information available to point in either direction. We know the others are doing well and for now, we’ll take that.
Until tomorrow…..