Over the past two years, Pamela Rayer has had injections of gamma globulin, a serum usually used to prevent or treat infectious diseases. She has taken a drug given to AIDS patients and one given for acne.
All have been experimental, and unsuccessful, attempts to beat back amyotrophic lateral sclerosis, or ALS, the disease that threatens the life of the Wichita wife and mother of four.
Also known as Lou Gehrig's disease, ALS is progressive and is fatal, usually within two to five years of diagnosis. Rayer was diagnosed two years ago.
In January, Rayer tried yet another experimental attack on her ALS: She became the 27th person in the United States, and the first woman, to get an infusion of umbilical stem cells.
The procedure has been used for certain types of cancer, but it's not approved for ALS, which is why Rayer won't talk about who did it or where, beyond saying it was in Atlanta.
The treatment isn't illegal, but it's not accepted, either. Because it's experimental, it's not covered by insurance. Rayer's parents helped with the $24,500 cost.
The 26 who went before her have all shown at least some improvement since their infusions, she said. She expects the same and said she already sees some evidence -- the dosage of the blood thinner she takes has been lowered three times since the transplant, and the numbness in her toes and pain in her shoulder is gone. Friends have said they think her speech has improved.
Still, only time will tell. The doctor who did the procedure said it would take two to six months to see any results. And the stem cell infusion is not considered a cure, only a hope for stopping the progression of the disease.
In ALS, the nerves degenerate, die and cause muscles to weaken and eventually atrophy. An estimated 30,000 Americans have ALS, and about 5,000 cases are diagnosed each year. It most commonly affects those 40 to 60 years old, men more often than women.
Rayer, whose faith plays a major role in her reaction to her disease, feels as if God led her to Atlanta.
"I had accepted the disease, that it was probably going to take its course," Rayer said. But after learning of the infusions and praying for God's guidance, she felt strongly that "this is where God wanted me to go next."
The stem cells were given, through an IV, over three days. It took 20 umbilical cords to produce the cells she was given.
When she was diagnosed in January 2001, the only real signs of the disease were in her hands, which had become weaker. Since then, the disease has continued its progression: Her fingers curl in, and she struggles to lift dishes onto kitchen shelves. She uses a cane to walk, and a decorative ladder next to the two steps up from the living room has become her handrail.
"I can still clean the kitchen, I still cook," she said. "I just start earlier."
She and family members say the disease has brought them closer together.
"It's a real bad disease," she said. "But it has just put such a focus on our family, on what's really important."
Her oldest daughter, Tiffany, has taken on the bookkeeping that Rayer used to do for the family business, Rayer's Bearden Stained Glass. Tiffany also stays close to home, to lend a hand and to be there if Rayer should take a fall, for example.
Her husband has picked up some "mom" duties but cuts her no slack: All he has to do to immobilize her, he joked, is pull her shirt up over her head. Her lack of upper body strength doesn't allow her to fight her way back out.
"It's definitely brought a lot more laughter and humor into our house," she said.
Still, she is frustrated by her limitations. "As I progress, it just steals a little bit more of me," she said, mentioning that she can no longer trust herself around the delicate glass in their store. "Just little by little, I have to give up."
Don't read more into "give up" than what she means. Her energy level is incredible since the transplant, she said, and she had to remind herself that skiing was out of the question during a recent trip to Colorado.
"But you know, maybe six months to a year from now, that may be possible."