Mikey's Song

Mikey's Song

By Jonathan Rosenblum

http://www.aish.com/sp/so/48899852.html

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 unique; our circumstances are unique," 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."