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Mikey's Song

May 9, 2009 | by Jonathan Rosenblum

Mikey's story is not one of terrible suffering, but of faith and triumph.

A saga that engaged the hearts of thousands of Jews (and non-Jews) around the globe ended last week in Pittsburgh, with the passing of Mikey Butler. Mikey spent more than half of his 24 years, and nearly 95% of his last two years in hospital.

Born with cystic fibrosis, Mikey lived his entire life on the precipice of death. Doctors gave him little chance of making it to his bar mitzvah. By his early teens, he was already directing the emergency room personnel every time he was rushed to the hospital.

Two years ago, he underwent a lung transplant in the hope that he would finally be able to breathe freely. Subsequently, he twice developed lymphoma and had to undergo brutal regimes of chemotherapy. Both times, he went into septic shock; once all his vital signs flatlined prior to his doctors bringing him back to life. Eventually the lymphoma morphed into full-blown cancer, necessitating an experimental stem cell transplant in which Mikey's own stem cells were harvested and then transplanted after three days of huge doses of chemotherapy.

By early October, Mikey's lack of white blood cells to coagulate the blood had caused the linings of every organ to fall away. His digestive system, kidneys and lungs were all failing.

Yet Mikey's story is not, in the end, one of terrible suffering, but of faith and triumph. Death was Mikey's lifelong companion. Yet he graduated Yeshiva University, and hoped one day to go to medical school. After his lung transplant, he was the lead drummer at the NCSY West Coast convention, and cut CDs. He kept in constant Email contact with hundreds of friends around the globe.

Mikey, said Rabbi Yisroel Miller of Pittsburgh, was m'lumad b'nissim (a person to whom miracles happened.) He was not supposed to reach adulthood or graduate college or survive the lung transplant. Fifty percent of otherwise healthy people who go into septic shock die; Mikey's ravaged body survived it twice.

One of his mother Nina's constant themes in the Mikey Updates that reached thousands around the world was using Mikey's story as a way of helping others to recognize the miraculous in their lives. The Butlers worried about losing their sense of the miraculous in every breath that Mikey took, not just in the overt miracles that accompanied him on his uncharted medical journey.

In early September, for instance, Mikey was scheduled for surgery to remove kidney stones that had clearly shown up on two CAT scans. But after being wheeled into the operating room, the flustered urologist could find no stones. The non-Jewish doctor agreed, to quote Nina, that "miracle was as plausible an explanation as any other he could offer!"

Neither Mikey nor his equally remarkable parents -- Nina, principal of Hillel Academy, and Danny, a judge -- viewed themselves as heroes. "We are not ; our circumstances are ," wrote Nina, in one of the Mikey Updates. Each Update concluded with the family's signature motto: Day by glorious day. And that is how the Butlers live.

To deal with their ordeal, the Butler's relied on lots of hugging and kissing, and a certain black humor all their own. Upon learning that Mikey was the first recorded case of someone to develop post-transplant lymphomatic disorder for a second time, Danny observed brightly, "Well at least no one ever died of a second round of PTLD." On one of the few occasions that Mikey complained of his situation -- "Abba, I can't see (from cataracts caused by years of steroids); and I can't hear (from years of antibiotics); and I can't walk (from chemotherapy dulling the nerves in his feet)…" -- Danny replied, "But at least you've still got cancer!"

Through it all, Mikey and his family never lost hope for the future. After the stem cell transplant, Mikey was constantly nauseous from the chemotherapy and in pain from the failure of almost every organ. His doctors, however, would not allow him to sleep for fear that he would fall again into septic shock. Yet even then, Danny wrote, "Mikey doesn't want it to be over; he wants it to be better."

"I had a terrific Shabbos," after a recent Shabbos in which he was able to spend 15 minutes on Friday night and 15 more on Shabbos day with his brother Gavri, who had driven in from school in New York to be with him.

Mikey's greatest gift was the inspiration he provided to others.

Never did the family doubt that there was purpose in Mikey's life. "God is good," Mikey mouthed to his father two months ago, at a time when he could no longer see, hear, breathe, walk, or talk. Mikey lived with the attitude that even in the hospital he could find opportunities to do kindness for others. The family hoped that if the experimental stem cell transplant succeeded, it would become the standard therapy for overcoming rejection of transplants.

Mikey's greatest gift was the inspiration he provided to others. The 18th birthday wish of Gila Kanal, the daughter of one of Mikey's doctors, was to be able to donate blood to Mikey. The list of the most recent donors in Pittsburgh was four single-spaced pages, and it was jokingly said in NCSY circles that the likeliest place in Pittsburgh to meet one's friends was the local blood bank. For two years, a group of 20-60 people, led by Danny's sister Feige, gathered weekly at the Western Wall to say Tehillim for Mikey.

Somehow the Butler family kept readjusting its standards of normal life, and carrying on: walking back and forth from Pittsburgh's Squirrel Hill neighborhood to the downtown hospital twice every Shabbos; in Nina's case, managing, on one occasion, to be at both Hillel's high school graduation and Mikey's emergency surgery scheduled for the same time. On Thanksgiving weekend, the Butler's hosted their annual Shabbaton for counselors at HASC (Hebrew Academy for Special Children) summer camp, at which another Butler child has been a long-time camper. Mikey encouraged his parents to attend a cousin's Shabbos bat mitzvah in Teaneck less than a month ago.

Most exciting, Mikey's brother Gavri recently became engaged in January to a young woman whom he first met through Mikey. Mikey sent out an Email in which he wrote of Gavri: "I love him and respect him in ways I cannot and will not try to put into words. While I have been on a medical rollercoaster, he has had to grow up very fast to fill in gaps no brother should have to."

Late Erev Shabbos, before Mikey's last Shabbos, his doctor Dr. Joel Weinberg, who has devoted himself to Mikey for years, giving up vacations, days off, even his dream of making aliyah, told him and his parents that the lymphoma had returned. Late Friday night his parents visited him. He mouthed Kiddush (being unable to talk on a respirator), drank a little grape juice, and did the same for HaMotzi and the special challah delivered every Friday by Rabbi Raphael Wasserman. Then the family sang Shabbos zmirot, with Mikey, almost totally deaf, lip-synching along and drumming in perfect syncopation on his tray table.

Mikey never realized his ambition of living a single day as a normal person, without 50-70 doses of medicine. But he achieved something far greater -- changing the lives of everyone who knew him or even knew of him.

Nina wrote in her last Mikey Update, just hours after his death, "When playing Tug-a-war with God, He wins. Turns out He was on Mikey's side. Now Mikey can hang out with Him. . . [But] God DID listen . . . and we have no regrets. Although it was WAY too soon for us, God has been awfully patient. . .

"Mikey is hearing beautiful music -- without hearing aids -- breathing easily in a pleasantly warm place, playing the drums and singing at the top of his full, vibrant lungs."

This article originally appeared in Hamodia.

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