Ride For Life: Glimmers of hope as men undergo ALS stem cell surgery in China

BEIJING, China - Edith Newton opens the hotel room door, beaming.

It's Wednesday morning, and they've just gotten word: Her husband, Wilbur, is to report to the hospital that afternoon to get his head shaved.

It's what they've spent days waiting for. The shaving means there'll be no more delays, no more anticipation, no more wondering when they'd be able to go home. It means the hospital has committed: Wilbur's surgery will take place the next day, Thursday.

In a way, the waiting for this day began a long time ago, even before they heard about an experimental surgery in Beijing.

It began more than five years ago, when Wilbur was diagnosed with a rare, fatal, incurable disease called amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease. Since then, the Newtons have been waiting for someone, somewhere, to give them good news, to tell them that Wilbur would get better, that his death sentence was lifted.

They looked for it at an Arizona health clinic, where Wilbur cut out sugar and received huge doses of Vitamin C. His daughter, Jessica Wilson, saved the blood from her baby daughter's umbilical cord four years ago, hoping that someday, the cells from it could help her father.

The whole family sought good news through prayer, begging God to heal Wilbur.

Now, maybe, God was giving them an answer.

The Newtons, who live near Grove Hill, arrived in Beijing on Oct. 2 with another Clarke County couple, Kevin and Nekol Lyles. Kevin, a former paper mill coworker of Wilbur's, also has ALS and had signed up first for surgery. His operation was Oct. 11, and since then, he has reported several improvements.

Wilbur's surgery, however, was delayed. The family never fully understood why, other than it had something to do with the cells to be transplanted into his brain. The doctor uses cells that must be extracted from the olfactory bulbs of second-term aborted fetuses. Sometimes there is a lull in second-term abortions, so scheduled surgeries become delayed and backlogged.

Sick come to Beijing:

The availability of the surgery has turned Beijing into a Mecca for ALS patients, even as American doctors warn that the procedure does not meet U.S. standards and might not work. At any one time, a dozen or more Americans are in China, anxious to have a procedure that might stop their cells from dying.

Wilbur has silently listened to reports of Kevin's progress. Silently, because the disease has robbed Wilbur's ability to speak, as well as his ability to walk, feed himself, write and even turn all the way over in bed.

Kevin could walk, but he couldn't speak, and he had to write his thoughts to everyone. Within days of surgery, he was speaking -- it was still in a labored, slow fashion, but he could often make himself understood.

Before surgery, Kevin had 75 to 100 brief muscle cramps a day. Since the surgery, he's had one. Before surgery, he could barely manage a dozen steps. Since surgery, he's trotted all over Tiananmen Square and the Forbidden City with its myriad staircases.

"I think Mom was more tired than I was," he wrote. After vanishing almost altogether, his speech has gotten clearer, but the process has been slow, so he must still sometimes write his thoughts to people.

Both families, devout Southern Baptists, have struggled with the issue of being treated with tissue from aborted fetuses. They oppose abortion. In the end, they said, they realized that by accepting treatment, they can turn something ugly into something good.

"That child gave its life that mine may go on," Kevin wrote one morning. "I don't know the situation behind the woman who made the decision to abort the child. I don't know if it was forced or she wanted a son or what. It's kind of like Joseph in the Bible. He was sold into slavery, but it turned out for the good because he saved many lives in Egypt when the famine came, and he also saved Israel in the process. So maybe I can use my life like Joseph and use it for good. Which we all should, but we take that for granted sometimes. That would make this child's life not be in vain."

Ready for surgery:

On Thursday morning, Edith, Lynn and Wilbur wait in their hotel room for the nurse to come get them and escort them to the hospital. It's 8:30 a.m., and they're dressed warmly because a cold wind has kicked up in Beijing.

The front of Wilbur's head has been shaved so a doctor can drill two holes in the top front of his skull in order to transplant fetal cells into his frontal lobe. Wilbur is worried about how it looks, but Edith, Lynn and Nekol reassure him it doesn't look bad at all. Edith and Lynn transfer Wilbur into his wheelchair, making sure his jacket is smooth around him and that nothing pokes him as he rides in the chair.

Finally the nurse arrives. They push Wilbur's wheelchair into the mirrored elevator -- the last opportunity for him to see himself pre-surgery. He might look the same afterward, but there will be a difference. There will be new cells inside his brain, new cells that a doctor tells them will encourage his motor neurons to live, to conduct messages to his tired muscles so they'll move again.

Whether it's science or the power of hope, even the doctor, Hongyun Huang, isn't sure.

"Some scientists ask me, maybe it's just placebo," Huang said.

A placebo is a harmless, unmedicated preparation given as a medicine or treatment to a patient to make him feel better.

"If placebo can treat patient, yeah, it's a good way. If placebo can keep patient alive one or two years more, we should use placebo."

Huang said he doesn't think the results are simply because of the placebo effect. For three years, he worked on rats with spinal cord injuries at Rutgers University. When they were injected with olfactory ensheathing glial cells -- cells that support the neurons that detect smell -- they regained function, he said.

The special thing about these glial cells, he said, is that they help the olfactory neurons regenerate for a lifetime. A neurosurgeon, he was anxious to transfer the results to the operating room, he said, so he re turned to China.

He made the leap from treating spinal cord injuries to treating ALS patients after an ALS patient pleaded with him to operate on him. Huang said he was reluctant, but the patient argued that he was going to die anyway. Nearly two years later, the patient is still alive, his condition stable, Huang said.

Christopher Reeve was intrigued by Huang's work, according to a 2003 New Yorker article. Huang said he met the paralyzed actor, who had talked about having the procedure himself. He never proceeded to make plans, which Huang speculated may have had something to do with Reeve's failing health. The actor died earlier this month.

The Newtons descend five floors, and then pass through the lobby, between the automatic glass doors to the steep ramp, where a doorman helps with the wheelchair. They go out across the uneven parking lot, avoiding the broken areas that can bog down the wheelchair, past a woman transferring plastic bottles from one bag to another, down a side street crowded with bicycles, where a woman hawks pajamas and a man sells fruit. All around is the rumbling and hammering of constant construction as Beijing prepares for the 2008 Olympics. The Newtons turn right into the parking lot of the red brick hospital.

The dimly lit hospital halls are crowded with men and women in white coats, patients in striped pajamas, wheelchairs, beds, patients' families in street clothes. In Chinese hospitals, families often stay overnight and provide much of the routine care for the patients. Edith plans to spend the night next to Wilbur, making sure he has what he needs. In the room, they put hospital pajamas on him and put him in bed.

Is he nervous?

Wilbur shakes his head. No.

Worried?

No.

Scaling the Great Wall:

Meanwhile, Kevin, Nekol and his parents, Evelyn and John, head for the Great Wall of China. They had planned to go with the Newtons, but Wilbur's delayed surgery prevented that.

The Lyleses get into a station wagon for a ride through town, down roads where the painted lines seem more a suggestion rather than a rule, past new residential structures, where condominiums sell for $75 a square foot, and into the countryside, where the buildings flatten out and the pollution disappears. In the distance are purple jagged mountains. They pass apple orchards, a cloisonné factory, a donkey pulling a cart bearing an enormous pig.

When someone is given a death sentence, the last thing they expect is new vistas to unfold before them.

But on this day, the foursome, plus another ALS patient, J.R. Ver of Pennsylvania and his son, Mark Ver, climb onto a ski lift and find themselves swinging up and up, with a view of spreading sharp-edged mountains all around them, and the Great Wall snaking across the mountaintops. To the right is the so-called Wild Wall, a steep ascent leading to a section that has crumbled and become overgrown with trees. Up ahead and to the left is the newly rebuilt wall, strong and broad.

The lift sets them down near the Wall. They walk around in wonder, snap photos and explore a guard tower. Kevin videotapes everything.

As they get ready to leave, his mom asks: "Need some help, Kevin?"

"He's fine," Nekol replies.

Afterward, everyone chooses to slide down the mountainside on toboggans, even the ALS patients. Nekol lets out a whoop as she starts down the metal zigzag track, Kevin close behind.

Back in Beijing, Wilbur and fellow ALS sufferer Ronnie Abidnoor of New Hampshire are in beds facing each other. Ronnie has been out of surgery for seven hours; Wilbur for six. Both are hooked up to catheters and monitors, their blood pressure and pulse and oxygen levels displayed on a screen beside them.

Wilbur's pulse is high, more than 140.

"Relax!" a doctor tells him.

It's not so easy. Wilbur, who was calm and cool before the surgery, is suddenly nervous. He can't explain why.

"I think he didn't know what to expect. You know," Edith tells the doctor.

Ronnie is convinced his speech worsened since the surgery. He does seem to be a bit more difficult to understand. Wilbur thinks his swallowing has gotten worse. Edith feeds him chocolate ice cream from a Kentucky Fried Chicken restaurant in Beijing and reassures him softly that he'll be OK.

The doctor leaves. Edith, Wilbur and Ronnie remain. Suddenly, Ronnie, always poised, always cool, always kidding, starts choking on phlegm. A doctor comes in. Ronnie tries to tell them what's wrong, but the doctor doesn't understand. Ronnie's friend, Hannah Ead, is not there to help. Ronnie cannot pull himself up in bed, cannot cough himself clear.

A small victory:

While waiting for reinforcements, Dr. Huang goes to Wilbur's side and starts pressing on his right hand. Wilbur squeezes his hand into a fist. He raises his right forearm from the bed onto his stomach. A huge smile spreads across his face. He can't remember the last time he could make a fist, and it's been at least a year since he could raise his arm that high, Edith says.

Then Ronnie starts to panic. He needs to be seated in a wheelchair and doubled over, with someone pounding on his back to loosen the mucus. The doctors don't understand. They stick a suction machine down his nose.

"I can't breathe," he gasps. "I can't breathe."

Finally the doctors and nurses transfer him to a wheelchair, nearly dropping him in the process. When Hannah arrives, she teases him about him not being able to cope with her gone even for a few minutes. She pounds him on the back to help clear his lungs. Ronnie recovers. Other Americans come in, and he shares his experience with them, describing it as a near-death experience.

Wilbur shows off his fist for the newcomers.

Edith laughs delightedly, watching him. The tension has melted from the room.

"How about that?" she asks.

Echoes Hannah: "How about that?"