Farmingville girl fighting leukemia returns home

Home from the hospital for slightly more than a month, Julianna Buttner, the Farmingville girl who has battled leukemia, is getting used to life with restrictions.

She can't eat leftovers, accompany her parents on grocery shopping trips or go on jaunts to the mall. And on the occasions when she must be among strangers, like during visits to see her doctors, her nose and mouth must be covered with a protective mask, a sometimes tough requirement for a talkative 7-year-old.

"She's taking it all in stride and doesn't seem to mind much at all," her father, Michael Buttner, said, referring to the measures to guard her from germs.

Despite these new limitations, Julianna is progressing well after her twin, Jessica, served as the donor in a life-saving bone marrow transplant in March. The Buttner family had sought an unrelated donor late last year in a bone marrow drive at a Farmingville fire station - more than 2,600 people from Long Island and beyond lined up with the hope of aiding the ailing child. Tests revealed none matched.

But that has not stopped the community's concern. Hundreds of cards and letters have poured into the Buttners' mailbox from well-wishers.

"They tell us to stay strong and to hang in there," Buttner said during an interview last week. "Some of the people say they've experienced the same thing with a child or that they had leukemia themselves. You don't know how much those expressions of kindness mean to us."

Yet just as the community's concern has brought tears to the eyes of Buttner and his wife, Lynda, so too, has the resilience of their daughters, who accepted their respective roles in the bone marrow transplant bravely, intrepidly, determinedly.

Eavesdropping on the twins recently as they spoke privately with each other, the Buttners said they were stunned by what they heard.

Jessica to Julianna: What's the best present you ever got in your whole life?

Julianna to Jessica: Bone marrow from you!

Jessica to Julianna: I thought you were going to say your puppy.

Julianna to Jessica: No, bone marrow.

Jessica's gift has not been without medical concerns. She has type 1 diabetes, an autoimmune disorder in which turncoat proteins relentlessly attack the tiny insulin-producing islet cells in her pancreas. The disorder used to be commonly called juvenile diabetes because it usually begins in childhood. But juvenile diabetes does not have child-size consequences, and is a serious disease that must be managed with daily insulin injections and close attention to diet.

There is no evidence, Michael Buttner said, that Julianna has developed diabetes as a result of receiving her sister's bone marrow. "They are still concerned," he said of his daughter's doctors. "The risk is there because they are identical twins."

On the whole, everything is looking up after the bone marrow transplant, which was performed at Memorial Sloan-Kettering Cancer Center in Manhattan. "All of her counts are coming up and the transplant took relatively quickly," Buttner continued. "But her B cells haven't come up yet, which is what we're waiting for." Julianna's next checkup is in three weeks.

B-cells are infection-fighting antibodies and, when they are low, patients are predisposed to infections, said Dr. Robert Parker, director of pediatric hematology/oncology at Stony Brook University Medical Center. He said low B-cell counts are common among children and adults who have undergone bone marrow transplants. Medications are available to help boost B cell counts if the condition persists, he said.

Even as Julianna's father marvels at her progress, he recalled harrowing moments during her hospitalization. "We almost lost her twice," Buttner said. "She went into anaphylactic shock because she had a severe reaction to a platelet transfusion."

While hospitalized, Julianna also experienced a condition called engraftment syndrome, which triggered a weeklong illness dominated by a fever that, at one point, reached 106 degrees.

Parker, who is one of Julianna's Long Island physicians, said the syndrome was caused by the rapid increase in white blood cells after the transplant. "That marrow is doing exactly what it's supposed to be doing," Parker said.