This has been a long day, and yet nothing has happened. It was around 1am last night when I set my blackberry alarm to wake me at 3am. Jackie stayed with Rafi in the hospital the first night but I really wanted to be at her side when they started that first infusion of busulfan at 4am. I am not sure why I wanted to be there. It’s about as climactic as taking some aspirin. But I felt it was important to be there. I felt like it was my fatherly duty.

Yeah well I didn’t make it. My head popped up and it was 4:45am. Boy was I mad at myself. I sent Jackie a text message inquiring about the situation and, of course, there was nothing to report. 45 minutes later I was in the hospital room lying down on our not quite inflated aerobed with Jackie. And then, every couple of minutes, one of the pumps in Rafi’s room makes the same noise as the door opening. It’s really uncanny. So I am expecting another wonderful nights sleep this evening.

It’s just before 10pm now and as I am typing that damn pump just made me pick my head up to see who was coming into the room. In a few minutes two nurses will walk in and set up the fourth infusion of chemotherapy. So every time that pump goes off, I am expecting busulfan. It just happened again. Wow I could use a scotch. The first infusion was at 4am, then 10am, then 4pm and finally at 10pm. Each IV infusion lasts 2 hours and there are 16 in total. One of the things i didn’t expect was that Rafi was going to be hooked up all the time. I guess i thought she would get the busulfan and then be off her leash for awhile. Oh well. She’ll get used to it, the same way she has dealt with everything else we’ve thrown at her.

With every blood test result we get and every time I look at her I know that the timing of us being here is perfect. If we waited longer I fear that EB would have taken too much from her. Her zinc levels are low, her red blood count and hemoglobin levels are low (and both were dropping even before the chemo), she has iron deficiency anemia, and her skin is breaking down more often than before. I don’t think she would have had a long time on this earth. So I am glad we are here. As I sit here and type I can vividly remember when kashual (our transplant coordinator) called and said that blue cross was approving the transplant. I was truly overwhelmed. We had just sent in the paperwork a couple of days before. In the defense of my stoic manhood, I hadn’t had a sip of my morning coffee when she called.

I also think the busulfan hit her early. I could be wrong, but when you look at your kid’s eyes you can just see that something isn’t right. Of course, she says, “Daddy I’m fine” when I ask her how she is doing. It’s been one day and here I am looking for any sign of side effects. Although I can say that I am not worried about a self fulfilling prophecy in this case. We know it’s coming, so here we are waiting, waiting and just waiting some more.

By the way, if you want me to report on anything I haven’t touched on as of yet please don’t hesitate to email me.

I should really do some work, but I am so tired right now I cna barely keep my eyes open and Marybeth keep telling Jackie and I to sleep. So I am going to take her advice. Let’s keep Sam in our thoughts and prayers as well. She is a tough one.

Brett