What do you want first...the good news or the bad news???

Let's start with the good news. Last week, Jo's platelets hit 94,000 - an all time high! I was naked and ready to run down the streets of Highlands Ranch hootin' and hollerin', but Jo slammed the door shut just as Anna had gotten her diaper undone and was about to join me.

Yesterday, Jo talked to Dr. Young and he was very pleased with the results of her bone marrow tests. He said overall, Jo's bone marrow looks good. However (that usually signals the bad news, right?), her PNH problem has increased. Back in February, 30% of her red blood cells were defective due to the PNH clone issue. This time, 80% of her red blood cells showed the PNH problem.

Even though Jo's bone marrow is producing more red blood cells, the cells are bursting as soon as they enter the blood stream. When the cells burst, they leave "garbage" (i.e. cell membranes) floating around in her blood stream, which increases her chances of having blood clots. According to Dr. Young, the miracle drug (code name: eculizumab - Alexion Pharmaceutical) is supposed to be approved by the FDA within a year and it should prevent the red blood cells from bursting. In the meantime, until the drug is available, Jo will have to take Coumadin to thin her blood to prevent blood clots. When you think about that, it's kind of ironic - Jo's bone marrow wasn't producing platelets, which meant she would have trouble clotting and now she has to take a medication to prevent clotting. Hmmph?

Today, we saw Dr. Kelly (the orthopedic surgeon here in Denver) again. She has been waiting for us to get permission from Dr. Young to move forward on Jo's hips. Dr. Young didn't exactly say, "yes, go ahead", but he did say he understands Jo's situation and he feels she will be fine to go ahead. His hesitation is easy to understand. Hip surgery will put a good deal of stress on Jo's body. The way Jo sees it is that if Barry Manilow can do it, she can do it.

Dr. Kelly is getting trained in late September on how to do a new hip resurfacing surgery as compared to the existing total hip replacement surgery. She wants to wait until after her training to make any decisions so she can find out from the experts if Jo is a candidate for this new technique which would give her more strength and flexibility than the traditional total hip replacement. Dr. Kelly did agree that it is reasonable for us to expect to have one hip surgery complete before Christmas and the other hip done approximately 3 to 4 months later.

We also questioned Dr. Kelly on the pockets of necrosis that are forming in Jo's shoulders and her knees. She said that there are a lot of options for the shoulders and the knees, but (sort of the same as "however", eh?) nothing can be done until the hips are fixed. After that, things can be done to try to stop or reverse the damage to the other joints.

NIH - 6 Month Checkup

Earlier this week, Jo and I traveled to Bethesda, MD for her 6 month checkup Tuesday morning at the NIH. It's hard to believe it has been 6 months since we were there for her ATG treatment! The primary physicians were not in town, but we did get to see one of the attending fellows and Jo did have a bone marrow aspiration and biopsy. We should have the results by the end of next week.

The fellow, Dr. Aliu was a very interesting "fellow". He claims to have just gotten over malaria, but it wasn't that big of a deal to him. He says he has had malaria a hundred times. Dr. Aliu said that he was very pleased with all of Jo's blood counts, but only Dr. Young or Dr. Scheinberg had the authority to label Jo as "responding" to the ATG and give us the green light for Jo's hip surgeries. We are pretty sure they wouldn't have given us the permission we are looking for until after they had a chance to see the bone marrow results anyway.

So, we hope to get good news next week and get official permission to take the next steps. Speaking of next steps, Anna is just about ready to walk. She pushes her walker all over the house at break-neck speed and she will stand for several seconds without holding on to anything before plopping down on her homper (that's Texan for dupa - which is Polish for buttocks).