Tuesday, February 03, 2009

Genes

Staring down at the drawing of Qavah's third chromosome, Paul and I listened carefully to the the information the genetic doctor had for us. We could see before us a code. The code on paper looked like an elongated capsule with lines randomly drawn through it. Each line meant something. Each line had its job to do as Qavah was formed in her mother's womb. The chromosome study supports a diagnosis of Diamond-Blackfan Anemia, even though she does not have some of the other symptoms of Diamond-Blackfan. Paul and I have spent hundreds of hours researching this disease. We still want to believe that Qavah's red cell aplasia can be put into remission.

There are two words beside the description of Diamond-Blackfan Anemia in the medical journal that make this hard for us. They are "no cure." Yesterday when I wrote about the train tracks, I did have health challenges in mind. On the one track there is disorder, transfusions, and a little girl constantly struggling with anemia. On the other track there is a little girl who feels joy very deeply. She had no idea it had snowed last night. In complete surprise she was scooped up into our arms and carried out into the snow. Wrapped up in her pajamas, pink bathrobe, high pink boots, and winter coat, she played with her daddy in the snow in the dark of night. Her shrieks of joy could be heard a long way off. She stayed outside long enough to throw some snowballs and leave her footprints all over the driveway.

We now have to move on with the knowlege that we have gained. We are continuing to seek help for Qavah through Brenner's Children's hospital in North Carolina. While this bend in the tracks wasn't what we anticipated, we are moving forward. There are also two words written beside Qavah's name in the Hebrew dictionary. They are "hope; patience."