Nicole calls me at work. It’s 9 PM. She leaves a message saying that she spoke with a Stem Cell Transplant surgeon at Duke. “Dr. K,” she calls her. Like they’re best buddies now. I shudder at the thought of what follows. Nicole says Dr K has done the transplants on 4 kids with Tay-Sachs. She says the procedure will mean at least 6 months in the hospital; maybe more. She and the kids will move up to North Carolina. Rachaeli will need to be immunosupressed. Major chemotherapy. There’s a real chance Rachaeli may not make it. So far, I’m thinking, thanks but no thanks, Dr. K. I’ll keep what I have.
She then says that she spoke with 2 moms; moms of Tay Sachs kids who received Stem Cell transplants at 15 mos of age. Both are still alive at 3 ½. Neither kid talks. One is starting to sit up. I think one eats some food. They seem not to be losing further milestones. So what? Just because they are no longer regressing, is that called “progress”? I am so terribly confused. No one says that brain cells suffocated by mounting depositions of fat ever grow back. No one says neurons will magically regenerate. Will anyone promise me that if we do this procedure that my daughter will one day look at me and say “Abba” again? I only heard that word once before the silence took over. I’ve sadly given up on hearing that a second time.
The mom of a dear patient of mine told me 6 months ago that she knew Rachaeli would be OK. She just knew it. What does that mean? Is a “cure” the only thing that is “OK”? Maybe dying is OK too. Maybe leaving your life of physical torture and returning to God’s warm embrace is OK. If there really is a procedure that can give my daughter back her missing enzyme and allow her to stay alive, albeit perhaps as a profoundly mentally retarded and severely disabled child forever – is that what I even want? One Rabbi says the question is what Rachaeli would want. Wow. That’s a tough one. Nicole ascribes her wishes on to our daughter. “Of course she would want to be with her loving family forever,” she says. I’m thinking that she might just be ready to go back to Hashem [God]. I guess that’s me talking, too; not Rachaeli.
I’ll hold her in my arms and look into her deep pensive eyes and I’ll ask her myself. I would accept “abba” as an answer.