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.

The Love Bug Visits Highlands Ranch

As has become customary at the Szymanski household, Anna has had her holiday photo shoot for tomorrow's Valentine's festivities. Keep an eye out around Denver tomorrow for the Love Bug spreading holiday cheer and maybe a chocolate kiss or two.

The mystery of the fluids of last week has now been revealed. Jo had an "episode" in terms of her red blood cells. For no apparent reason, her body was destroying red blood cells at a very rapid pace, creating a massive amount of cell debris to be processed by her kidneys. Dr. Alvarez had Jo come to his office for extra fluids 3 days to "flush" out her kidneys and she got a red cell transfusion to boost her counts.

What triggered all of the excitement was Jo's blood test on Monday. It was the first time in 2 years that her blood count report ever indicated an "alert". The report shows an "L" or an "H" and sometimes even an "LL" indicating low and high levels. The alert was for a measurement of her kidney functions. All is back to normal now. In less than two weeks, we head out to the NIH for Jo's one year follow-up and hopefully we'll get more information about the miracle drug that is supposed to solve her red blood cell problem.

Jo saw Dr. Kelly today and she confirmed the March 21st date for hip replacement #2. Dr. Kelly is extremely pleased with Jo's progress and she feels like everything is right on track. Jo did also have the opportunity to talk to Dr. Kelly a little bit about what will happen after this hip is done.

Jo's shoulders and knees still have pockets of necrosis that need to be treated. Jo has not had any increase in the pain in her shoulders and knees, which indicates that the joints are not collapsing like the hips. Dr. Kelly's plan is to use the "core decompression" technique on her shoulders next to try to reverse the progress of the disease. Little Miss Overachiever asked Dr. Kelly if both shoulders could maybe be done at the same time. Dr. Kelly replied, "Not if you want to be able to brush your teeth."

"Gearing" Up for Hip #2

All right already! A guy doesn't do a blog entry for 6 weeks and everybody is ready to send him to the gallows. I thought the old saying was, "No news is good news." Plus, I've been shoveling snow nonstop for 6 weeks. Now that the normal Denver winter is back (60+ degrees today), I guess I don't have an excuse anymore.

Emily is now back from England and she and Anna have gotten reacquainted quite quickly. Emily was very excited to get back to the land of Milk and Honey. She said the snow in Denver even made the news in England! Fortunately for us, Emily's memories of the M*A*S*H unit of last November have all but faded completely away.

My mom is already scheduling her flight into Denver to help for that first week or so after Jo's surgery, which is still set for March 21st. My father will pick her up on his drive back from Arizona to Minnesota for the summer.

Jo and I head out to the NIH in Bethesda on February 26th and Jo will have another bone marrow biopsy on the 27th. We will now only be required to go to the NIH once per year. Hopefully we will get some good news about the "miracle drug" that is supposed to take care of Jo's red blood cell problem.

Jo's red blood cells have actually been low for the last week or so and Dr. Alvarez is considering a red cell transfusion later this week. He called her into his office today for fluids and she has to go back tomorrow and get more. We are not 100% sure what the fluids are for, but they may very well just be to make Jo feel a bit better. Low red cell counts also mean fatigue and Jo has definitely been feeling run down.

As for that new left hip, it feels great according to Jo. The range of motion she has in her left hip right now compared to her right hip is amazing! She says it really does feel as good as new and she cannot wait to get the 2nd one finished.