Back to the NIH

Back in May, Jo and I visited the NIH for her 4-Year Checkup. Every time we go, they take a bone marrow sample and run a multitude of tests. One test is to identify how many of Jo’s red blood cells have the PNH clone. Another test they do is to look at 20 of Jo’s cells and analyze the chromosomes of each cell. “20 cells” doesn’t sound like a lot, but evidently, it’s enough and it’s a “laborious” process.

About 3 weeks ago, Jo got a call from Dr. Sheinberg at the NIH. The good news is that Jo’s PNH clone has dropped below 50% which means it is okay for her to start working her way off Coumadin. This was tremendous news! Once she is off Coumadin, she would be literally “drug free”. The bad news was that he wanted us to come back to the NIH so they could take another bone marrow sample.

4 of Jo’s cells (20%) were missing Chromosome #7. The doctors referred to this as Monosomy 7. Her doctors want the bone marrow tests done again to confirm the results of the last test. As Dr. Alvarez would say, “Three things could happen.” 1) The chromosomal abnormality could go away. This does happen in a certain number of people. 2) The chromosomal abnormality could come back at 20% again. If this is the case, we’ll go back in 6 months to have her bone marrow checked again. 3) The chromosomal abnormality could increase. If this were to happen, the NIH would most likely recommend a bone marrow transplant.

Don’t forget that Jo’s brother is a perfect bone marrow match. The NIH considers this Jo’s “Ace in the Hole.” In just the 5 years that we have been going to the NIH, they have made amazing advancements in their bone marrow transplant research. They are not shy about telling us that if Jo ever needed a transplant, they feel she would do extremely well.

The doctors were very clear that they are not fans of Monosomy 7. They were also very clear that they were surprised that Jo’s bone marrow looks so good considering the chromosome abnormality. We should have the results of this latest test in about 2 to 3 weeks.