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Despair



 

My sister Michelle and I were both tested to see if either of us could be Katrin’s bone marrow donor. Siblings have the best chance of being a perfect match—about one in three—and I felt strangely hopeful that my blood would come through. But I was wrong. Neither Michelle nor I was a match for Katrin. The irony was that we were perfect matches for each other, but neither of us could help Katrin. This meant that Katrin now had to try to find a donor through the national bone marrow registries. To our dismay, we learned that once siblings had failed to match, the odds of finding a donor decreased dramatically, especially for people of Asian and African descent. The Internet is filled with appeals from dying patients desperately searching for a bone marrow match. And even if there was a match out there, the process could take months—months that Katrin might not have.

Katrin’s first round of chemo had not been a nightmare, but the second round more than made up for that. It was brutal. Now days would go by without my hearing from her. In panic I’d call Or, but often just get his voice mail; or he’d answer brusquely and say, “I can’t talk now, Amy. I’ll try to call later.”

The main source of mortality from chemotherapy is infection. Ordinary ailments like the common cold or flu can easily kill a cancer patient whose white blood cells have been destroyed. Katrin got one infection after another. To fight them, her doctors prescribed a slew of antibiotics, which caused all kinds of painful side effects, and when those antibiotics didn’t work, they tried different ones. She couldn’t eat or drink for weeks and had to be given fluids intravenously. She was always either freezing or burning up. The complications and crises kept coming, and she was often in so much agony she had to be sedated.

When the second round of chemo had been administered, we again had to hold our breath and wait. One of the ways we’d know if Katrin’s leukemia was in remission was if she starting producing healthy blood cells—in particular neutrophils, which defend against bacterial infection. I knew that Katrin’s blood was drawn first thing every morning, so I’d sit at my computer screen starting at 6:00 A.M., waiting for an e-mail from her. But Katrin no longer wrote to me. When I couldn’t stand waiting anymore and e-mailed Katrin first, I’d get terse answers like, “Counts not going up yet” or “Still nothing. Pretty disappointed.” Soon, she didn’t respond to my e-mails at all.

I’ve always wondered what’s wrong with people who don’t get the point and leave voice message after voice message (“Ca-a-ll me! Where are you? I’m worried!”) even when it’s obvious there’s a reason no one’s calling them back. Well, now I couldn’t help myself. I was too anxious to care about being annoying. The week after her second round of chemo ended, I called Katrin over and over every morning, and even though she never answered—she had caller ID, so she knew it was me—I kept leaving messages, giving her updates on useless things, imagining that I was being cheery and uplifting.

Then one morning, Katrin answered the phone. She didn’t sound like herself. Her voice was so faint I could barely hear her. I asked her how she was feeling, but she just sighed. Then she said, “It’s no use, Amy. I’m not going to make it. There’s no hope. . . . There’s just no hope,” and her voice trailed off.

“Don’t be silly, Katrin. It’s totally normal for it to take this long for counts to go up. Sometimes it can take months. Jed actually just researched all this. I can send you the numbers if you want. Also, Or tells me that the doctor is extremely optimistic. Just give it one more day.”

There was no reply, so I started up again. “Lulu is such a nightmare!” I said, and I regaled her with stories about the violin and our fights and me flipping out. Before she got sick, Katrin and I had often talked about parenting and how it was impossible for us to wield the same authority over our kids that our parents had exerted over us.

Then, to my relief, I heard Katrin laugh on the other end and say in a more normal voice, “Poor Lulu. She’s such a nice girl, Amy. You shouldn’t be so hard on her.”

On Halloween, we learned that they had located a donor, a Chinese-American who was apparently a perfect match for Katrin. Four days later, I got an e-mail from Katrin saying, “I have neutrophils! Level is 100, needs to be 500 but hopefully rising.” And they did—very slowly, but they did. In early November, Katrin was released from the hospital to regain her strength. She had exactly one month before the bone marrow transplant, which unbelievably would require yet another round of chemo—this one the mother of all chemos, administered in a special germ-free ward—to wipe out all of Katrin’s own diseased bone marrow so that the donor’s healthy marrow could replace it. Many patients never made it out of that ward.

During her month at home, Katrin seemed so happy. She enjoyed everything: feeding Ella, taking her children for walks, and just watching them sleep. Her favorite thing was to watch Jake play tennis.

The bone marrow transplant took place on Christmas Eve. My parents and my whole family took rooms in a Boston hotel. We had takeout Chinese food and opened presents with Or, Jake, and Ella.

 

30 “Hebrew Melody”

 

A brand new year—2009. It didn’t start off too festively for us. We returned from Boston, exhausted. It had been hard work trying to bring holiday cheer to Jake and Ella while their mother lay in an intensive-care bone marrow ward. Dealing with my parents was even more excruciating. My mother insisted on torturing herself by asking why, why, why Katrin had gotten leukemia. I snapped at her cruelly a few times, then felt awful. My father kept asking me the same medical questions over and over, which I referred to Jed, who patiently explained the mechanics of the transplant process. We were all terrified of what the new year might bring.

When we got back to New Haven, we found our house dark and freezing. There had been a vicious snowstorm with record high winds, and some of our windows were broken. Then there was an electricity blackout, which left us heatless for a while. Jed and I had a new semester starting up, and courses to prepare for. Worst of all, the violin loomed—Lulu had three concerts coming up—and so did Lulu’s Bat Mitzvah. Back into the trenches, I thought grimly.

Lulu and I were barely speaking. Her hair was a violent rebuke. Despite the hair cutter’s best efforts, it was still short and a little jagged, and it put me in a bad mood.

In late January, Katrin was released from the hospital. She was initially so frail she had trouble going up stairs. Because she was still highly vulnerable to infection, she was not permitted to go to restaurants, grocery stores, or movie theaters without a protective mask. We all crossed our fingers and prayed that her new blood wouldn’t attack her own body. We’d know within a few months whether or not she’d have the worst kind of complication—acute graft-versus-host disease—which was potentially fatal.

As the weeks passed and her Bat Mitzvah got closer, Lulu and I engaged in intensifying combat. As with Sophia, we were being unconventional and having the Bat Mitzvah in our home. Jed handled the major responsibilities, but I was the one constantly haranguing Lulu to practice her haftarah portion—I was going to be a Chinese mother even when it came to Hebrew. As always, it was over the violin that we fought most bitterly. “Didn’t you hear me? I said go upstairs and practice the ‘Hebrew Melody’ NOW!” I must have thundered a thousand times. “It’s not a difficult piece, so if it’s not incredibly moving, it’ll be a failure.” “Do you want to be mediocre?” I’d yell at other times. “Is that what you want?”

Lulu always retaliated fiercely. “Not everyone’s Bat Mitzvah has to be special, and I don’t want to practice,” she’d shoot back. Or: “I’m not playing violin at my Bat Mitzvah! And you can’t change my mind.” Or: “I hate violin. I want to quit!” The decibel level in our house went off the charts. Right up until the morning of the Bat Mitzvah, I didn’t know if Lulu was going to play the “Hebrew Melody” or not, even though it was on the programs Jed had had printed up.

Lulu did it. She came through. She read her Torah and haftarah portions with poise and confidence, and the way she played the “Hebrew Melody”—filling the room with tones so hauntingly beautiful guests cried—it was clear to everyone that it came from deep inside her.

At the reception afterward, I saw Lulu’s face glowing as she greeted guests. “Oh my God Lulu, you are, like, scary on the violin, I mean like totally amazing,” I heard one of her friends say to her.

“She’s extraordinary,” a singer friend of mine marveled. “She clearly has a gift, something no one can teach.” When I told her how much trouble I was having getting Lulu to practice, my friend said, “You can’t let her quit. She’ll regret it for the rest of her life.”

That’s how it always was when Lulu played the violin. Listeners were gripped by her, and she seemed gripped by the music. It’s what made it so confusing and maddening when we fought and she insisted she hated the violin.

“Congratulations, Amy. Goodness knows what I could have been if you’d been my mother,” joked our friend Caren, a former dancer. “I could have been great.”

“Oh, no, Caren, I wouldn’t wish myself on anyone,” I said, shaking my head. “There’s been a lot of yelling and screaming in this house. I didn’t even think Lulu was going to play today. To tell you the truth, it’s been traumatic.”

“But you’ve given your girls so much,” Caren persisted. “A sense of their own abilities, of the value of excellence. That’s something they’ll have all their lives.”

“Maybe,” I said dubiously. “I’m just not so sure anymore.”

It was a great party, and everyone had fun. A big highlight was that Katrin and her family attended. In the five months since her release from the hospital, Katrin had slowly regained strength, although her immune system was still weak, and I panicked every time someone coughed. Katrin looked thin but pretty and almost triumphant carrying Ella.

That night, after all the guests had gone and we’d cleaned up as much as we could, I lay in bed wondering if Lulu might come and hug me the way she did after “The Little White Donkey.” It had been a long time. But she didn’t come, and I went to her bedroom instead.

“Aren’t you glad I made you play the ‘Hebrew Melody’?” I asked her.

Lulu seemed happy, but not particularly warm toward me. “Yes, Mommy,” she said. “You can take the credit.”

“Okay, I will,” I said, trying to laugh. Then I told her that I was proud of her and that she’d been brilliant. Lulu smiled and was gracious. But she seemed distracted, almost impatient for me to leave, and something in her eyes told me that my days were numbered.

 




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