Miracles all around in recovery of Destrehan teen

finney    The doctors at Tulane Medical Center were stumped, and for good reason. Madison Tully, the adopted teenage daughter of Deacon Jeff Tully and his wife Roxanne, had been diagnosed just after birth with sickle cell anemia. But now as an adolescent, she was facing an inexplicably rare combination of two diseases – sickle cell and lupus – a double whammy so off the charts that there had been only 12 previously reported cases around the world.
    Untreated, it was a death sentence.
     “There was just no historical data,” Jeff said.
    “All we knew is that is was excruciatingly painful for her,” Roxanne said. “She would cry and get to the point of screaming. When you can’t take the pain away from your child, there is no worse feeling in the world.”
    The pain was so bad that Madison, then 15, pleaded with her parents, “Let me go to God. Let me go.”
    Dr. Julie Kanter, a pediatric oncologist at Tulane, suggested as a last resort a bone marrow transplant, a treatment that had never been tried before to cure a person suffering simultaneously from the two diseases. In addition to the skimpy medical prognosis, a bone marrow transplant would require compatible bone marrow that Madison’s body would not reject.
    But those odds were even longer because Madison was of blended race – white, black and Hispanic – which made finding a compatible donor astronomical.
    It would take a miracle, and, actually, the God cards had begun stacking up years earlier. After their 1984 marriage, the Tullys had tried unsuccessfully for several years to conceive, but nothing had worked, and they turned to the possibility of an open adoption.
    A woman, Karen Thomas, already had one child, and when she became pregnant a year later with Madison, she wrestled with a decision to carry her pregnancy to term.
    “When Karen found out she was pregnant with Madison, she actually went to the abortion clinic with the money in her pocket,” Jeff said. “For whatever reason, when it was time to pay, she told the clinic, ‘I have to go home and get the money.’”
    Something stopped the birth mother from going through with the abortion, and a few months later, she was leafing through the profiles of prospective adoptive parents when she settled on the Tullys, who were involved in youth ministry at St. Charles Borromeo Parish in Destrehan. She wanted her baby raised by a good Catholic family.
    When Madison was born on July 17, 1994, Madison went to the Tullys’ home, but the birth mother still had five days to change her mind and take the baby back.
    “We kept in contact with Karen, and Jeff asked her every day, ‘If you want to change your mind, come now. Don’t let us fall in love with her,’” Roxanne said.
    Madison stayed with the Tullys. A year later – in another God event – the Tullys conceived a child of their own, a daughter named Ridge, after 11 years of trying.
    But now, 15 years after Madison was born, Roxanne was the person on the phone, speaking again to Karen Thomas on a matter of life and death. Madison’s biological sister, Jasmine Thomas, might be her only hope for a life-saving cure.
    “I had no hesitation to make that phone call and ask Karen’s permission to speak to Jasmine,” Roxanne said, understanding how that would not have been possible if the Tullys had gone through a closed adoption. “I knew I had to do that to save my daughter’s life. I just explained to Jasmine that Madison needed a transplant if she were to get over this illness. I asked if she would consider being tested to see if she were a match. She didn’t know what was involved. She just said, ‘Yes.’”

madison_tully    Doctors said even between biological siblings, there is only a 25 percent chance of an acceptable bone marrow match. The minimal scenario is to match on six out of 10 markers. “Jasmine was a 10 out of 10,” Roxanne said. “She was what they call a ‘perfect’ match.”
    “It blew the minds of the physicians,” Jeff said.
    So, on Aug. 4, 2010 – after 10 days of chemotherapy had killed her bad bone marrow cells – Madison had the transplant, a leap of faith even for the doctors. For six weeks, Madison remained in isolation while her bone marrow and immunity were rebuilt.
    Family and community members sent over food and made sure Ridge was not overlooked. Stephen Weber, the principal of Destrehan High School, made sure Madison got her homework and tests from faculty and students. Restaurants sent over gumbo. Since Madison couldn’t eat her favorite food – sushi – because of her compromised immunity, Jeff fasted from sushi, too.
    A hair stylist came to the hospital to shave Madison’s hair and then used the bathroom sink to color Roxanne’s hair. St. Charles Borromeo held a 24-hour prayer vigil for Madison.
    Four months after Madison’s transplant – on Dec. 11, 2010 – Jeff was ordained a permanent deacon at St. Louis Cathedral. Madison was there, still bloated from the steroids she had been given and wearing a surgical mask to ward off infection.
    “I think she was more excited about being out of the house than seeing me be ordained,” Jeff said with a laugh.
    A month later, the Tullys got the results of the first definitive bone marrow test. “It showed that her marrow matched Jasmine’s,” Jeff said. She was on her way.
    Jack Pitkin, an avid volunteer at the Seelos Center, had heard about Madison and brought over a relic of Blessed Francis Xavier Seelos while she was recovering. As it turned out, Pitkin later moved into Notre Dame Hospice, where Jeff is vice president of mission and development. On Sept. 12, 2011 – a year after the transplant – Jeff was able to tell Pitkin that doctors had told him that day that Madison was cured. Pitkin died later that night.
    The family also prays daily to Father John Phuc, the former St. Charles Borromeo pastor who drowned in 2001 in a boating accident. The Tullys and Father Phuc were inseparable, even taking vacations to Disney World together.
    Now, more than two years after her transplant, doctors say Madison has reached a pinnacle. She is disease-free, a recent Destrehan High graduate and is pursuing a career as a stylist at Paul Mitchell. She might become a nurse one day.
    “She’s always been a compassionate child, and now she is even more so,” Roxanne said. “She is so good-hearted. She hates to see anyone suffer. She wants everyone to be in a perfect place.”
    Peter Finney Jr. can be reach at pfinney@clarionherald.org.

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