Gary Coronado/The Post
Gary and Judy Susser talk to their son Adam, 4, before his June 6 stem-cell injection in Mexico. Adam was born blind, paralyzed and with cerebral palsy.
• How stem cells are injected
Slide show, audio• Past stories, photos
Posted on 10/27/2005 4:21:05 PM PDT by Coleus
Family pins hopes for son on stem-cell shots
TIJUANA, Mexico — Slowly, patiently, Dr. Fernando Ramirez del Rio slides on a pair of latex gloves.
A nurse tips a 1-inch long vial out of a Ziploc bag and into his palm. It's frozen and white. Ramirez says it contains about 1.8 million stem cells. He says it will take about 10 minutes to thaw the tube using the warmth of his hands. He then has 20 minutes to use the cells before they spoil.
He passes the vial to Judy Susser, who looks nervous. She takes it, rolls it between her hands. Then Ramirez offers it to her husband, Gary.
"It's time to give energy," Ramirez says. Gary touches it quickly.
A few minutes pass, and Ramirez holds the vial up to the light to see if it has thawed. The liquid inside glides easily up and down the tube as he tilts it. It is perfectly clear, like water.
The nurse unwraps a needle, the kind diabetics use to inject insulin. Judy lets out a big sigh.
Ramirez sucks stem cells into the syringe, taking in 1.6 milliliters.
Judy looks away, covering her eyes with one hand. Gary lays their quadriplegic son, Adam, out on the bed, keeping his head close to his son's. He begins to sing The Cat Came Back, one of Adam's favorites. Adam laughs.
Ramirez inserts the needle below the boy's belly button and pushes the plunger, thrusting the umbilical-cord stem cells into the tissue just under Adam's skin. Adam's laughter turns to silent tears.
"Breathe, breathe. You're OK," Gary says.
The 4-year-old Boca Raton boy finally begins to cry in loud, full sobs. Tears run down his cheeks, and his skinny stomach, still exposed, contracts with each heaving gasp.
"You're OK, you're OK. You want a beer? You want to go to Disney?" Gary says. He gives Adam raspberries on his cheeks. He picks him up, trying to calm him and puts him in Judy's lap. His crying slows. Tears streak his cheeks and his nose runs. Judy holds him.
A vacation and a medical odyssey
Hope. It may be the only thing that Judy Susser holds onto as tightly as Adam, who has cerebral palsy. Hope that he will challenge his father to a game of hoops. Hope that he will play soccer with his healthy twin brother, Brandon. Hope that he will one day hold her as she holds him.
The Susser family's recent trip to Mexico, which began with a flight to San Diego, is part family vacation, part medical odyssey. On Saturday and Sunday they took a harbor cruise and went to Sea World. On this day, Monday, they drive to Tijuana so Adam can receive a stem-cell injection that his parents believe will help their son heal. No matter that U.S. medical experts see this as a fool's journey.
It is the third time the family has made the cross-country trip from Boca Raton, paying $6,000 for each injection, because the procedure is not approved in the United States.
At 12:30 p.m., the Toyota van swings into the Centro Medico parking lot. Gary emerges from the back seat carrying Adam, limp as a rag doll, in his arms.
The mud-brown seven-story medical office building stands alone, easily spotted from the U.S. border crossing about a half-mile away.
After a quick elevator ride, Gary, Judy and Kevork DerAlexanian, the van driver, walk into Suite 203. DerAlexanian carries a small turquoise cooler containing a frozen vial of stem cells bought from a U.S. distributor and brought across the border in the van. If the cells were shipped to the doctor's office in Tijuana, they would spoil before Mexican customs officials would release them.
In the waiting room, Gary sits with Adam in his arms. Judy sits stiffly, her arms close to her body, next to a bookshelf holding a television/VCR, a collection of movies including Highlander and a large fish tank full of brown, thick water. But no fish.
"Are we in Boca?" Gary says, looking around the peach-colored room. "No."
Dr. Ramirez walks in. There are handshakes and hellos.
"I try to get used to it. Every time I come here, you get the same emotions," Judy says while her husband and the doctor talk. "It's happy and apprehensive and all that."
Twins on 'same track emotionally'
Their preparation for the day trip across the border to Tijuana began about 10 a.m. in their San Diego hotel suite.
Sheila Anderson, the family's nanny, pours a mixture of nutritional supplement, protein powder and muscle relaxer into Adam's feeding tube to supplement his breakfast oatmeal. Gary, Judy and Brandon fetch breakfast from a local restaurant, bringing back sandwiches in white bags.
Judy checks on Adam, asking Sheila what he's eaten. She kneels down, brushing his long brown hair off his forehead and kissing him. Adam snorts. She snorts back.
The driver is supposed to be there by 11:30. Until then, the family kills time.
In the living room, Brandon, who will be 5 in next month, eats homemade tortillas and watches Cartoon Network. While his brother goes to Tijuana for the experimental treatment, Brandon will go with Sheila to Old Town, the historic district of San Diego adjacent to the hotel.
"Both are on the same track emotionally," Gary, a Boynton Beach-based trial lawyer, said of his sons. "Physically, they're different. Mentally, we think they're the same."
Brandon developed normally. There were problems with Adam's birth at Coral Springs Medical Center, and he suffered brain damage. He was born blind, paralyzed and with cerebral palsy. The family received an undisclosed amount as a settlement; that money pays for their trips to Tijuana.
Judy and Gary got married in 1997 and tried right away to have children. After seven tries with artificial insemination, Judy conceived twin boys through in-vitro fertilization.
Gary says he and his wife have a decision to make — whether to give the stem cells to Adam in a shot or in an IV tube.
"This time we want to do the IV. It depends on if his veins are good," he says. Gary says the doctor has told him the intravenous method could help Adam heal faster.
Healing was what the Sussers were looking for when another Palm Beach County family told them about a doctor in Mexico who had helped their daughter. Gary and Judy looked at their son, who could not speak, see or move, and decided they had little to lose.
Adam slowly starts to make progress
Adam had his first stem-cell injection in February 2004. A couple of months later, the Sussers took him to Bascom Palmer Eye Institute in Miami, where doctors told them his optic nerve was breaking down from lack of use. There was little chance he would regain his sight.
"My wife is crying. I'm trying to keep it together," Gary said, recalling that day.
Gary was angry. He called Dr. David Steenblock, a California doctor of osteopathy who works with Ramirez. Steenblock had told Gary before the stem-cell shot that Adam would be a good candidate for the stem-cell treatment.
"I was so P.O.'ed. I called Steenblock up. I called him snake oil," Gary said. "They said they wanted to order a test. I said, 'Don't give me this. Don't give me excuses.' "
A few weeks later, on Memorial Day weekend, Adam's eyes followed a brightly colored soccer ball that Brandon rolled silently across the floor in their Boca Raton home. The Sussers were ecstatic. They took Adam to an ophthalmologist at Nova Southeastern University in Davie who said that Adam had visual activity and should get glasses.
Gary called Steenblock back. They later scheduled another stem-cell shot for November.
The Sussers have seen other progress. Adam can now take steps in his walker and has started speaking, even though he can't control when he speaks. And his words are rare.
But some stem-cell researchers doubt that Adam's progress has anything to do with the injections.
"It's a scam," said Dr. Evan Snyder, a pediatric neurologist, stem-cell biologist and director of the stem-cell and regeneration program at the Burnham Institute in La Jolla, Calif. "Those cells getting into circulation such that they'd be able to address chronic disorders like cerebral palsy is beyond comprehension of how biology works."
Dr. Joanne Kurtzberg, director of pediatrics at the blood and bone marrow transplant program at Duke University Medical Center in Durham, N.C., said the patient must be given chemotherapy to prevent the body from attacking the stem cells, and doctors must match the cells to the patient's tissue type. She also said the cells must be given intravenously or injected into the fluid around the brain to be effective on brain damage.
"Giving them under the skin is useless,'' she said.
Both Gary and Judy acknowledge that it is hard to tease out what progress is due to the stem cells and what is due to Adam's myriad therapy sessions. But they can't explain Adam's sight with therapy.
"Is it coincidence? Is it luck? Is it snake oil? But if it ain't broke, don't fix it. And if the risk is minimal. If he's 15 and it did just this much," Gary says, leaning forward and holding his thumb and index finger just a hair apart, "it's worth it."
An eye on present, the other on future
In the San Diego hotel suite, Brandon hooks up a portable DVD player to the television and Gary sticks in Roy Orbison: Black and White Night. He scrolls to Ooby Dooby and turns the volume way up. In the bedroom, Sheila has laid Adam on the bed and is changing his diaper. He smiles when he hears the song. Next is Oh, Pretty Woman, another of Adam's favorites.
There's no sign of the van driver. The family decides to go outside and get some sun while they wait. Gary holds Adam in his arms. Brandon brings out fat pieces of sidewalk chalk and begins drawing elaborate, tangled designs. Judy stands by.
"We talk about it. We say we hope we're doing the right thing," she says. "We get so many calls from parents all over. They have their own stories, and they're looking for hope. We tell them we can't say it's the stem cells that do all this."
She looks down at Brandon, covered in chalk dust.
"I would do the same for him, God forbid," she says.
Adam smiles as Gary horses around with him, flipping him over and holding him by his ankles so that his brown hair hangs straight down. He's a skinny 35 pounds, but soon it won't be so easy to carry him into the bedroom and the shower. He needs help to do everything. At 51, Gary is an older father with one eye on the future.
Family takes treatment in stride
The whole procedure takes the Mexican doctor less than an hour. Ramirez had decided against the IV method, saying Adam wasn't ready.
Judy consoles Adam after the shot, holding him in her lap.
"Mommy's going to take you for a walk. Want to go for a walk?" she says to her son. Adam continues to cry but less violently.
"Some children are more sensitive than others," Ramirez says.
"He's a tough kid, really tough," Judy says.
"You're a tough lady," Ramirez says to her. She smiles a little and shakes her head.
The van is back on the road with DerAlexanian behind the wheel and Adam in Gary's lap, his tears gone. The van joins the three long lanes of cars at a standstill, waiting to cross the border back into the United States.
"I'm always a skeptic. I'm always half-optimistic," Gary says.
"The first time, I thought it was water,'' he said of the vial of stem cells. "I thought it was B.S."
"If that's true, it's a sin to do that," Judy says.
Outside the van's tinted windows, vendors are weaving through the cars, hawking soccer jerseys, glass vases, fried dough, stuffed toys, crucifixes, mangos, limes, a print of the late Pope John Paul II bowing to the Virgin Mary.
Gary talks to DerAlexanian about a family from Broward County coming down for their first stem-cell treatment later this week. Their daughter is in therapy with Adam, and they learned about the Mexican clinic from the Sussers.
Gary says he doesn't know when he'll bring Adam for another injection.
Soon Adam is smiling. The only remnant of the shot is the small round Band-Aid on his belly.
"If that's the worst of the shot, what is there versus the gain?" Gary asks.
Gary Coronado/The Post Gary and Judy Susser talk to their son Adam, 4, before his June 6 stem-cell injection in Mexico. Adam was born blind, paralyzed and with cerebral palsy. |
Graphic • How stem cells are injected |
A Boca family travels to Mexico for stem-cell therapy they hope will heal quadriplegic Adam Susser, 4. Slide show, audio • Past stories, photos |
I wonder what his criteria is for the child being "ready" for the IV form of the injection. 1.6 ml given subcutaneously to a 4 year old seems like a very excessive volume; I wonder what his injection sites look like?
As for the rest of the article, "snake oil" sounds to be a good descriptor of this procedure. If they are injecting the cells into the subcutaneous tissue (as described in the article), even if stem cells do work to treat chronic diseases, I doubt that enough of them would get into the blood to be distributed to the target areas to be effective. And, as the article mentions, they need to be an immunologic match to the person receiving them. I wonder if the clinic in Tijuana did tissue type matching first?
I don't discount that stem cells will some day be of use in treating disease (I have nothing against research into ADULT stem cells), but this sounds very suspicious.
I can understand the family trying this out; who wouldn't try a potential cure, when faced with what they are. It's understandable that they are unable to look at this as objectively as someone not involved with their son, but I think they are wasting their money.
Ping
Didn't Christopher Reeve get cancer from embryonic stem cell therapy? Wasn't that why he was totally hairless, from chemo?
Mayo clinic has begun using stem cells on terminal patients.
We'll figure this out in the next decade, but the bBrits are way ahead of us.
They learned how to repair Livers. They aren't sure how they did it, but they can do it. Same with restoring sight.
I'm still trying to figure this one out.
Yep; sad story all the way around.
I had never heard whether Christopher got cancer.
snake oil?
The injection region of the stomach below the 'belly button' is also used when some forms of 'blood cleansing' procedures are used with failing kidneys. I'm not clear on this; I'll ping Dr. Beverly ...
I'm way out of my league here - and there's no real information in the article. Bone marrow transplants are given by IV and look like thinned blood transfusions. They used to stink to high heaven because of the preservation chemicals. But, I haven't been near a stem cell or bone marrow transplant since 1993.
I've read about stem cell transplants into veins and tissues in research animals. I've even read about neural stem cells given by IV that go past the blood-brain barrier and migrate to the right site where they're needed.
I'm afraid that the doc is either making the protocol up as he goes along or something worse.
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