Monday, April 26, 2010

Back Up and Running!

A technical problem with our cable made it impossible for me to come home and post an update. But the problem is solved and now I hardly know where to begin. The cable is back up and running and so are we.

Qavah was a champion last week as we took our map of the research center and followed it to roughly eight appointments a day. Qavah was cooperative beyond belief and that made the job of all the doctors, nurses, and technicians, so much easier. The best part of the week was the meeting we had with the bone marrow failure team at the end of the week. They were excited. I could tell that they had something to tell us that would be significant. They reported that the immunology department had discovered that Qavah's neutrophils did not recognize or go after and destroy bacteria as it should. I was told that the research team at NIH have mice with that condition but Qavah is the first human to be identified with that condition. That finding was so important that we have been asked to come back as soon as possible for further immunology studies. It also means that the mice are available for drug testing leading to a cure. They are currently testing antibiotics to do the job that the neutrophils refuse to do.

Each department gave me some good advice about how to handle Qavah's skin rashes, deafness, iron overload and more. I thought the NIH would simply collect data but they did so much more than that. Many of the doctors taught me and offered advice. When I mentioned how surprised I was by all the help I received, one of the doctors said, "Well, remember that we are doctors first, then scientists."

The week was non-stop testing in addition to a blood transfusion and bone marrow biopsy. Qavah asked for very little in return. However, one morning she woke up and said, "Mama, I want macaroni and cheese for lunch." I prayed right out loud, "Lord, please give her mac and cheese today." Our schedule allowed us 35 minutes for lunch in the cafeteria and mac and cheese was not on the menu previously. Each time she mentioned wanting to eat lunch I thought, "O Lord, I don't want to disappoint her!" I pulled her in her little red wagon to the cafeteria that day and the menu in the hot food section read, "Today's special, Macaroni and Cheese." I could have cried but Qavah was looking through the glass at the hot food choices shouting, "Look, Mama, there it is!" Some people might think that was just a coincidence, but when we sat down to pray, Qavah and I thanked God for giving us the desires of our heart. Of course I had to snap a picture. I want her to look at these pictures in the future as evidence that God hears us and He cares.