Wednesday July 28, 2004

7/28/2004 9:43:33 AM

We left home at 5 AM and arrived at Duke by 11, 90 minutes before our appointment. I drove the whole way. I don’t want to sit in back next to Rachaeli. Somehow, I feel terribly sad making this trip. I need to control something. So I drive.

As we wait for our appointment, I take some digital pictures of Rachaeli. She’s fading. She didn’t look this sick 3 months ago. I’m crying again. The only damn moron in the atrium crying. Why am I nervous? Nicole seems incredibly at peace.

The office is filled with pictures and art by kids who survived cancer and other terminal diseases because of Dr. K and stem cell transplants. These kids are all writing nifty letters to Dr. Kurtzberg about their appreciation for their lives and families. I wonder to myself what my daughter would one day write. I catch myself.

Dr. K is sweet as can be. She asks us questions about Rachaeli’s “reverse development”. She asks to hold Rachaeli. Her torso is limp and weak. Her head flops forward. Her legs are hypertonic and extended. She seems non-reactive. All I see is such incredible beauty. Dr. K looks at us sympathetically. Then she cuts to the chase. Rachaeli is too sick. She tells us that the procedure will mean a minimum of 6 months in the hospital; maybe a year. There is only a 10-15% chance that she will survive the procedure. I feel myself stop breathing. I ask her to repeat herself. She explains that Rachaeli’s clinical deterioration puts her at very high risk for known fatal complications of the chemotherapy and immunosupression. In the unlikely event that she does survive the transplant, she explains that Rachaeli will, at best, stabilize, but not improve. In fact, it is quite possible that her seizures will significantly worsen. She says there is no reason at all to believe that Rachaeli will reach any new milestones. She will, at best, stay where she is. Blind. Non-communicative. Unable to swallow. Unable to sit. Unable to roll over. She makes it painfully clear that, despite our best interventions thusfar, the Tay Sachs disease process is very advanced in Rachaeli. Now I’m crying again, though I’m not even sure why. Many conflicting reasons come to mind.

She’s basically telling us to take our daughter home and to try to enjoy the time we have left with her. Doing a stem cell transplant will only bring her life to a rapid and more painful end. Nicole seems reticent and accepting. I’m still crying. Maybe I was hoping Dr. K would tell us some miraculous story about another child just like ours who, against all odds, survived, developed, and lived to enjoy life with her siblings. She didn’t seem to have any such stories for us today. We thanked her profusely for being candid and sincere. I tried not to look again at the art on the walls.

As we drove out of the Duke complex, I stopped the car and took one last look at these buildings. I would not be seeing them again.

I whispered a prayer to God. I thanked him for making His will unmistakably clear. We drove 6 hours home. I hope Rachaeli isn’t upset.