Prayers for Madison Part 2

>>>Please see earlier post on August 9th and continue to pray for this special young lady.

After unique surgery that treated rare illness, teen heads home


by Meg Farris / Eyewitness News

wwltv.com

Posted on August 23, 2010 at 6:24 PM

Updated today at 6:26 PM

NEW ORLEANS -- A brave teenager from Destrehan can finally go home after nearly three weeks in the hospital.

She made the decision to be the first person in the world to try a treatment for a rare combination of two diseases. And now Madison Tully's progress is being followed by the medical community around the world.

On August 4, 16-year-old Tully was about to make history. One of only 12 known people in the world who has both sickle cell disease and lupus, her life was on the line. Doctors at Tulane decided to do a bone marrow transplant that could be a cure for both.

But there were risks. Still, Tully wanted to take them.

"It's like excruciating pain and like, you can't describe it and it's very hard to deal with because sometimes I just don't want to live anymore, because I can't take it and it's very hard," Madison Tully said crying in her hospital room on August 4.

"It would mean the world to me to be able to cure her. She has really had a rough six months, and one of our discussions during this was that she knows that it's a life threatening procedure. And she's 16, so I make sure that my teenagers really understand what we're doing and it's not just their parents, but about their decisions. And Madison very specifically said, 'I don't want to live this way,'" said Dr. Julie Kanter of Tulane, who specializes in Pediatric Hematology and Oncology.

The twist to the story is that Tully was adopted at birth, making a match very difficult because of her white, black and Hispanic mixed heritage. But her 17-year-old biological sister, Jasmin Thomas, stepped forward and was a perfect match.

Steroids changed Tully dramatically, causing a rapid 30-pound weight gain and considerable swelling. The chemotherapy caused her to go bald.

But today she took a major step forward. Tully, feeling very weak, but having fun in a cotton candy colored wig, got to go home.

"Madison is doing great. She really has done so much better than I thought she would. Her transplant was complicated by a few problems that we foresaw and were able to take care of," Kanter said.

One medicine made her sick. There was a rash, pain and high fever. Her blood pressure shot up, but through it all, this teen in isolation in her hospital room, did her Wii Fit for exercise. And when she got to her home in Destrehan, there were surprise banners the length of the house. And a message for all her classmates.

"Thanks for praying for me," Tully said in a very weak voice.

It will be a few months, with lots of exams, a strict diet and no school visitors until doctors know if Tully is cured. But already she's making a difference. Other children with sickle cell disease now are coming forward for bone marrow transplants.

Tulane will now be part of a nationwide study for transplants in patients with sickle cell disease beginning in November.

If you would like more on the study or to donate to the Tulane Pediatric Bone Marrow Transplant Unit call 504-988-6060.

If you would like to become a bone marrow donor go to www.nmdp.org. Doctors just take a swab of the inside of your cheek to have your genetic information on record.

The Tully family has started a non-profit organization called Peace on Earth to help parents of sick children. To donate write to P.O. Box 728, Destrehan, LA 70047.