Meg Farris / Eyewitness News
DESTREHAN, La. -- A Destrehan teenager was in the fight of her life when doctors at Tulane decided to try a something new.
They had hoped to make her body better prepared for a potentially life changing treatment.
And now in the last year a young girl is making medical history that could now save others.
It was in the summer of 2010 that a high school student from Destrehan was fighting for her life.
"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," cried Madison Tully from her isolated hospital room in August 2010.
Madison, 16, was one of only 12 known people in the world fighting two genetic conditions, sickle cell illness and lupus.
The sickle cell was discovered at birth. The red blood cell defect caused a lack of oxygen to her organs and pain. The lupus, found recently, caused her own immune system to attack her organs as if they were foreign invaders like a virus.
August 2010, Madison was living in a sterile and isolated room at Tulane Medical Center. Steroids changed her dramatically, causing a rapid 30-pound weight gain and considerable swelling. The chemo caused her to go bald.
Doctors had hopes that by performing a different type of bone marrow transplant, she could be the first be cured of both illnesses.
"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, a Tulane specialist in pediatric hematology and oncology.
But there was a catch. Madison was adopted. Her genetic heritage is a mixture of white, black and Hispanic. Finding a match meant contacting a biological sister in Metairie who had only found out about Madison a few years earlier.
Jasmin Thomas, 17, did step forward to save Madison's life. The two biological sisters, living in different worlds, were a perfect bone marrow match.
A few weeks later, Madison went home very weak. Medicine made her sick. There was a rash, pain, high fever and blood pressure. Now it was months of wait and see, with lots of exams, a strict diet and no school visitors.
Now today, Madison could soon make international medical news as the first in the world to be cured in a year of both illnesses with this special type of transplant.
"She has recovered from her bone marrow transplant. She is successfully cured of both her sickle cell disease and her lupus. She's amazing. She's back in school. She's dating too many boys. She looks great," said Dr. Kanter.
Madison said she feels great.
"Awesome, like, I don't really know how to explain, like 'cause, I like, never felt like this in my life. And it's like, kind of weird saying, like, yeah, I went through that," said Madison.
Doctors see no evidence, so far, that Madison has sickle cell or lupus. But this is the crucial time. If she can get to the two-year mark without rejecting Jasmin's new, healthy bone marrow cells, they most likely will become her own.
Madison is back to her normal weight, but there have been side effects of the life-saving treatment.
"The worst side effect that Madison has suffered has been some deterioration of her hip. So steroids themselves cause something called avascular necrosis, and when part of the bone dies a little bit and it can cause the hip, that's nice and smooth, to become rough and painful," explained Dr. Kanter.
Last week, Madison had hip replacement surgery. Her hip joint had crumbled from the treatment. The treatment also put her in menopause.
If hormone replacement therapy can't reverse it, she will be unable to get pregnant. She will be continually monitored for bone thinning called osteoporosis, thyroid, dental problems, cataracts and infections due to her lowered immune system.
But for now, Madison has a normal life with her little sister Ridge. She stays in touch with Jasmin and is no longer verbally abused by some classmates as she was when medicine caused weight gain. She and her family are grateful.
"It's a miracle. Every day's a miracle. Every day we wake up and we thank God for the miracle of the transplant. We thank God that Jasmin was able and willing to be the donor, because without her none of this would have happened and we'd be in a much worse place. We're just thankful for all the medical team, doctors, nurses, techs, everyone who had a part in the whole procedure for curing Madison, we're thankful for," said Roxanne Tully, Madison's mother.
"Miracles do happen," said Madison.
Tulane doctors are submitting this for publication in major medical journals. There is no other similar case in the medical literature.
Doctors now want to use this new way of getting patients ready to accept a bone marrow transplant, on others with severe sickle cell illness.
To see if you qualify for the study, call the Tulane Sickle Cell Center at 504-988-5413.
For more on the study, click here.
The criteria to qualify include:
- severe sickle cell
- debilitating pain
- pulmonary infections
- severe bone problems