Alexis Jones-Heggs was trying to perk up but it was a struggle and that is understandable.
Jones-Heggs, 33, was the first in the Augusta area on Dec. 14 to receive a bone-marrow transplant to try and cure her of sickle cell disease as part of a national clinical trial that involves the Sickle Cell Center at Augusta University. Now her body is undergoing the process of using the bone marrow from her sister, Aquila Jordan, to begin building new healthy cells to replace the blood cells she had that were fragile and prone to breaking down, causing anemia and clots in small blood vessels that create incredibly painful episodes.
“We’re just waiting for her engraftment,” said Dr. Jeremy Pantin as he stood in Jones-Heggs room at AU Medical Center.
Jones-Heggs was the first but Pantin already has another sickle cell patient who has agreed to be evaluated for transplant and he is talking to three or four more. Transplants have been done in about 500-600 sickle cell patients, with one study finding an 87 percent success rate in adults. Most were done in small institutional studies, however, so there was a need for a big national, multicenter clinical trial to show it is a cure and better than the standard treatment.
Jones-Heggs is actually the second in the national trial to get her transplant, which happened last week.
“I’m good,” Jones-Heggs insisted, despite the grogginess from medication and a headache.
“She’s doing good,” Pantin said. “Everything is going as expected.”
Jones-Heggs was told to expect to be in the hospital for 30 days.
“It could be sooner,” Pantin said. “She got a lot more cells than anticipated.”
The biggest concern would be her body recognizing the cells as foreign and attacking them and Jones-Heggs is taking immunosuppressive medicine to combat that.
“The greatest risk is the first three months,” Pantin said, and that risk drops considerably after a year.
The chemotherapy that wiped out her own bone marrow hasn’t really affected her.
“I haven’t had any nausea,” Jones-Heggs said, as she drank some orange juice. “I’m eating everything.”
A bigger immediate risk might be boredom.
Coloring books and markers are scattered across her bed, and she writes and reads and paints her toenails to pass the time. Jones-Heggs also has time to make plans that seemed more difficult when she was battling a disease that also claimed the life of one of her sisters. She is still planning on going skydiving with her friends.
“We’re going to go, seriously,” Jones-Heggs said, as Pantin grimaced nearby. “I like the rush.”
And when her 12-year-old daughter, Jocelyn, gets out of school, she wants to move from Mount Vernon to Augusta permanently.
“It’s a bigger outlet for all of the things I went to school for,” Jones-Heggs said. She was studying to be a pharmacy technician at Southeastern Technical College but had to withdraw from school to prepare for the transplant but she plans to go back and finish. The transplant and the degree will allow her to finally get off disability and pursue a career.
“I want to be able to work and provide for my child,” Jones-Heggs.
But for now, she must wait. That means spending the holidays away from home and Jocelyn. Jones-Heggs’ immune system is so weak that visitors must wear a protective gown and gloves to avoid passing along anything to her.
“A simple common cold could be devastating,” Pantin said.
But Jones-Heggs is hopeful she can get a visit from her daughter, perhaps in a waiting room closed off to other visitors.
“I’m sure we could arrange that,” Pantin said.
Reach Tom Corwin at (706) 823-3213 or firstname.lastname@example.org