We are now halfway done with the cytoxan and the fludarabine. It’s really nice to say that we only have two more days of chemotherapy. Two more days. Two more days. I really like the sound of that.

Rafaella was born on the 19th and she will get her new stem cells on the 19th. As you know, she is the eighth patient with Epidermolysis Bullosa and both Jackie and I were born in the 8th month. There is a nice symmetry to all that. Let’s go from the sublime to the ridiculous for a moment. If you subtract 8 from 19, you get the month Rafi was born. You see how I just took that a little too far. You know what, I’ll grasp at some straws to stay positive and hopeful.

In general, Rafi is doing very well. All the important numbers are still well within acceptable parameters, and her kidneys and bladder are working very well. Most importantly, she only has some bouts of vomiting and diarrhea. We know it is still really early in the process, but no bad news is great news.

The larger dose of chloral hydrate did not completely have the intended effect we hoped for. I can’t say Rafi was sedated or even calmed down as compared to other times. We are going to alter the timing of the drugs and see if that helps at all. The hospital, in their ultimate wisdom, heard our argument about allocating nursing time for the bath and bandage changes and they agreed to provide help. I love it when a plan comes together.

Off to sleep now, while I have the chance.