One Year Checkup at the NIH

Jo had another lovely bone marrow biopsy done today at the NIH and I was scolded for harassing the patient. It's just hard not to play with the patient when she is sedated and can't remember anything she says from one minute to the next. Keep in mind that Jo doesn't remember one single thing from the procedure, but my life will go on with even more memories of that giant needle going into her hip. Oh, the emotional trauma I have endured...

We saw Dr. Schienburg and Dr. Childs today. Even though we haven't spent a lot of time with Dr. Scheinburg, he is the primary physician in charge of this particular protocol, under the watchful eye of Dr. Young, of course. Each of the doctors talked about Jo's Aplastic Anemia as if it were "gone" and the primary source of concern now is the PNH problem. Jo will always have to be monitored in case her bone marrow relapses, but for now the Aplastic Anemia has been pushed into remission.

Jo began having another PNH episode yesterday or today, which is maybe good since the NIH doctors will get some blood samples first hand. Our #1 question for today was in regard to the miracle drug that was supposed to come out last fall to solve the PNH problem. It is still on the way. Dr. Childs expects it to be available in early 2008. Dr. Scheinberg said it could be 3 months or it could be 15 months. I think the real answer is that they are not allowed to give us their real thoughts due to the sensitivity of that kind of knowledge.

We did find out more about the miracle drug though. Jo would have to get it administered intravenously every two weeks...for the rest of her life. Those were not the best words in the world to hear. After some thought, it doesn't seem as bad as at first. More than likely, they will continue to improve the drug and develop it into oral form as some point. As for today, they are probably just hoping to get it to market the fastest way possible.

Another thing the miracle drug will do is allow Jo to stop taking Coumadin every day to thin her blood. The primary issue caused by the PNH clones is the potential for blood clots due to the cell debris in Jo's blood. The miracle drug will stop the destruction of the red blood cells - the reason that clotting is a concern.

By the way, yes I do know that I spelled Dr. Shein "Ice" berg's name 3 different ways above. I have no idea how he spells it.