NIH - 3 Month Checkup

This morning, Jo and I were in Bethesda, MD at the NIH for her 3 month checkup. Her platelets had dropped to 43,000 and I wasn't expecting good news.

We spent about 15 minutes with Dr. Young and he had nothing but positive things to say. His first words were, "You are clearly responding [to the ATG]." His second sentence was, "Your bone marrow is definitely producing blood cells." He explained to us that the patients that show this type of response by 3 months or 6 months are the patients that experience the best long-term results.

Dr. Young also explained that Jo could live for the rest of her life at the levels she is currently at. A level of 40,000 to 50,000 platelets is nowhere near normal, but it is a level that does not require transfusions. The only time she would need to be transfused is before any type of surgery, such as is required on her hips. He did say that Jo should start working with the orthopedic surgeons on a plan for her hips that could be implemented as soon as September!

Dr. Young went way over my head with a brief explanation of all the other things in Jo's blood that we are keeping an eye on. There is a lot of stuff happening that isn't considered life-threatening, but it must be watched. The bottom line is that he was extremely pleased with the progress so far and we'll just have to wait and see what happens between now and Jo's 6 month checkup.

The PNH Clones are still in Jo's blood and many of her red blood cells are bursting after they are created, but Dr. Young didn't feel this was a major issue right now. By year's end, a new "miracle drug" will be released that Dr. Young (and Dr. Childs) both believe will control the PNH problem.

And, in the 11th Month, God said...

"Let there be mobility!" This past week, Anna started crawling pretty good. Fortunately, she is not too fast yet, but the amount of effort needed to keep up with her is growing exponentially.

Anna is having a little trouble sleeping. The past 2 days, when we put her down for her nap, she has fallen asleep sitting up in her crib. Her little head bobs up and down and sometimes bangs the side of the crib. However, being able to sleep sitting up is a good skill to develop for when she has to take some of those less-than-useful "core" requirements in college.

Jo's platelets are at 51,000. She really hasn't had any major changes to her counts in several weeks. In just over a week, Jo has her first checkup at the NIH. We are very excited to go back and touch base with the doctors and see what they think of Jo's improvement so far.

April Showers Bring May Flowers

Jo, Anna and Mamaw Rita come back to Denver on Wednesday. Jo has only had her blood checked once in Texas and her platelets were at 47,000.