In search of a miracle
Sheâd tried everything to heal her son. Stem cells were her last hope
July 12, 2018
Luane Beck dressed her sonÂ while he was still asleep,Â his limbs heavy and loose,Â getting him into jeans, brown Vans and his favorite blue hooded Â sweatshirt. It was dark outside, two hours before sunrise.
She needed to have Jordan in front of their hotel in San Diego by 5:30 a.m. to meet a bus that would drive them across the border to Tijuana. In a storefront medical clinic there, Jordan was scheduled to get a treatment he couldnât get in the United States, one provided by an American doctor stripped of his medical license.Â A treatment sheâd pay $15,000 for: an infusion of stem cellsÂ she hoped would change his life.
Jordan has autism and suffers seizures. Severely underdeveloped, he looks like he might be just 5 years old. But on this very day, he was turning 9. Luane had brought him here hoping the therapy offered in Mexico would finally end his seizures, improve his speech and social skills, help him grow strong and tall.
The Miracle Cell
This series explores the hope and reality of the revolutionary science of stem cell therapy. It focuses on what has transpired since 2004, when California voters approved a $3 billion bond measure to fund stem cell research with the promise that it soon would produce new treatments for incurable diseases.
In four parts, it follows the stories of patients desperately seeking remedies; probes the for-profit clinics where unproven and unregulated treatments are being offered; takes you into the labs and hospital rooms where scientists are testing new therapies; and provides a comprehensive accounting of what Californiaâs multibillion-dollar bet on stem cells has achieved.
Once awake, Jordan was the most animated person in the cluttered hotel room. He paced, clutching a plastic carton of strawberries, then trading them for a bag of potato chips. Downstairs, he raced out of the hotel, his family trailing behind: his two mothers, Luane and Kim, his grandmother, Carol, his little sister, Kai. Theyâd all made the 470-mile trip from their homes near Santa Cruz.
A white van arrived and everyone piled in. The sky was just turning grayÂ as it pulled away.
They were approaching the moment Luane had contemplated, planned for and anguished about for more than a year. She had tried almost every type of therapy she could to help Jordan: mainstream drugs that were meant to control the seizures but turned her sweet boy into a terror, alternative treatments that improved some symptoms of autism, then seemed to stop working.
Now, desperate to see him improve, and against the advice of doctors, sheâd decided to spend thousands of dollars she didnât have on an unproven therapy that offered little but hope.
Once inside the Tijuana clinic, holding Jordan on her lap, Luaneâs anxiety swelled. What if the stem cell therapy didnât work? What if it was a scam, as his neurologist had warned her? What if it actually harmed him?
She held Jordan tighter. Hope had carried her to this clinic with her boy, and hope would sustain her now.
Maybe, she thought, this birthday would be Jordanâs rebirth.
When Luane first considered stem cell therapy for Jordan, she asked his neurologist at Stanford about it. I wonât stop you, the doctor told her, but I canât recommend it. She knew of other parents who had sought out stem cell therapies, the doctor said. None had seen results.
By American standards of medicine, there is no proven stem cell therapy for seizures or autism. Anyone claiming otherwise is offering, at best, an untested treatment with unknown benefits and consequences. At worst, they are selling something they know doesnât work.
But these cellsâ unrivaled potential to heal is a powerful allure.
Luane Beck holds Jordan in the emergency room while he suffers a prolonged seizure. Jordanâs seizures sometimes occur one after another with no break, and they can be deadly without emergency care.
Stem cells are the foundation of the human body. From the moment a human egg is fertilized, stem cells begin to multiply and transform themselves to create our blood supply, nervous systems and the bones of our skeletons. They build every organ, from heart and brain to liver and skin. And as we age, stem cells are the tools that repair and replace the cellsÂ we lose to injury, disease and decay.
Their near-limitless ability to reproduce, and to become almost any other kind of cell in the body, makes stem cells better suited than perhaps any drug to heal all kinds of untreatable maladies. Mainstream doctors and scientists long have lauded their potential and sought ways to harness their power.
In 2004, California voters were so convinced that cures from stem cells were close at hand that they approved Proposition 71, a $3 billion bond measure to pay for research that the federal government would not.
Nearly 15 years later, no proven therapy has emerged. But some doctors already claim to have tapped stem cellsâ potential. And some patients refuse to wait any longer to seek treatment.
Because the clinics offering stem cell therapies are mostly unregulated, itâs impossible to say how many people seek these treatments every year, but health economists estimate itâs a $10 billion-plus global industry.
Though the therapies offered are unproven, they are also easily accessible and frequently promoted among patient communities, especially people with multiple sclerosis and other autoimmune diseases, and children with autism, a condition that affects an estimated 1 in 60 children in the United States.
Stem cell treatment centers that cater to American clients are well established in such countries as Mexico, Panama, China and India. They sell clients packages with hotel and airfare. Their websites promote payment plans and feature testimonials raving about their results.
Increasingly, similar stem cell clinics are flourishing in the United States. They advertise treatments for ailments ranging from sports injuries and back pain to complex neurological disorders and autoimmune conditions, problems for which modern medical care often comes up short.
Mainstream scientists and doctors urge patience and caution to patients and their families. New therapies are on the horizon, they advise. Stem cells may indeed help solve some of the most complicated disorders. But not yet.
And so people like Luane, desperate for solutions to debilitating and even fatal conditions, mustÂ navigate the rocky path between the hope and reality of stem cell therapies. They are left to choose between waiting on the promise of treatments that could be decades away, or reaching for expensive and risky therapies already at hand.
Most families turn away from the risk. But some seek out stem cells as a last resort. They know they are entering murkyÂ medical territory, but feel there is no other choice.
That was the feeling that drove Luane to Mexico. Her son, she said, didnât have five or 10 or 20 years to wait. Heâd already lost too much time.
Jordan plays in the pool during an adaptive swim class. His mother Luane enrolls him in several types of classes to improve symptoms of autism.
Jordan Beck-Clark is about 3Â˝ feet tall andÂ weighs aroundÂ 40 pounds. His spindly limbs look frail, but are surprisingly strong. He can swing effortlessly across monkey bars and pump himself toward the sky on a swing.
Last summer he learned to cruise around his familyâs cozy neighborhood, a collection of tidy houses in Scotts Valley, on a bicycle without training wheels, deftly darting around parked minivans and curbside basketball hoops.
He talks in one-Â or two-word statements, his chatter unintelligible as often as not. He has a wide grin and enormous brown eyes that give him the constant appearance of being intensely curious about whatâs going on around him.
Itâs easy to make Jordan laugh.Â Heâs spontaneously affectionate, clutching suddenly at his moms and sister for hugs or a kiss. He likes to wander â out the front door, down the driveway, across the street. He seems fearless.
âHeâs perfect the way he is,â Kim Clark said.
She would give anything, though, to see her son gain weight, to fill out jeans that are always loose at the waist and shirts that sag at his shoulders, the too-long sleeves swallowing his hands.Â To have him live without the threat of seizures. For his speech to improve â for Jordan to finally have the freedom to express himself, to share with his moms the dreams sheâs sure are bubbling away in the mind of a bright, creative child.
Luane and Kim married in 2008, and decided right away they wanted to adopt.Â It was another year before they got the call: A boy had been born in Santa Cruz. His birth mother was addicted to methamphetamine, and the baby had drugs in his system. Jordan spent five days in the neonatal intensive care unit before Luane and Kim brought him home. They adopted him 11 months later.
For the first few months, Jordan seemed to thrive. That changed, Luane and Kim believe, when he got his six-month vaccination. Science has repeatedly proved that vaccines are not harmful to infants; Luane and Kim saw only that their son seemed to nosedive, that their happy baby became listless and fussy and stopped meeting his milestones.
Luane first suspected Jordan had autism when he was just 10 months old. It took another two years to get a formal diagnosis. Around age 4, his seizures started, for reasons no one has been able to explain.
âFor years, we just kept getting, âHeâs a puzzle. Heâs a gray area of science,â â Kim said. Eventually, she and Luane stopped trying to get answers. âThey just donât know.â
Jordanâs seizures, when they are bad, fold one into another, recurring without a break for him to recover and requiring medical intervention to get them to stop. They can continue for hours. Sometimes they will appear minor, as though he is just staring into space or nodding off to sleep.
But his mothers have come to know better. If left unattended, the seizures can be deadly. For Luane and Kim, the hours spent in the hospital, cradling their too-small son while waiting for emergency drugs to work, can be stressful beyond endurance.
Doctors have prescribed medications to prevent the seizures, to mixed results: Only one has proved effective; all have come with problematic side effects.Â The worst drugs have been levetiracetam and clobazam; both made Jordan aggressive and prone to violent tantrums. Heâd kick Luane or throw things at her. Heâd torment Kai, who is two years younger, hitting her or pulling her hair.
Luane mixes Jordanâs antiseizure medication on a restaurant table before a trip to Disneyland. They visited the theme park on their way down to Mexico to get a stem cell therapy for Jordan.
Currently, Jordan is on two drugs, including a low dose of clobazam. Before he got the stem cells he hadnât been hospitalized for a seizure in more than a year, but Luane didnât feel confident that the worst days were over.
Jordan wears an oxygen monitor every night, because a drop in his oxygen levels can be a sign that heâs about to have a seizure, Luane says. One of his medications has caused his sodium levels to plummet, which can lead to dangerous swelling in the brain, so doctors have to watch closely to make sure that doesnât happen again.
Luane and Kim wonder, too, if the drugs that stop his seizures might be worsening the symptoms of his autism. In the brief times heâs gone off the drugs he seems more alert, his language sharper, his appetite more robust, Luane said. What if the medications that are keeping him safe are also holding him back?
Luane prepares antiseizure medication for Jordan in the parking garage of a grocery store in San Diego the night before his stem cell treatment.
Jordan has been on every mainstream drug for epilepsy, and Luane has given him treatments that some doctors later asked her to reconsider. She has put him on special diets and supplements. For a while she was spending $1,700 a month on cannabis, in the form of liquid drops that include small amounts of both cannabidiol, or CBD, and THC, the chemical that causes users to feel high. But she eventually stopped because it interacted badly with one of his other medications.
In late 2016, Luane wanted to enroll Jordan in a federally approved clinical trial at Duke University in North Carolina in which children with autism would be given stem cells taken from umbilical cord blood. She knew of parents who had taken their children outside of the country for stem cell therapies, but the trial was the first time she considered them for her son.
Then Jordan had a seizure, and was ruled out as too high-risk. Another chance to help her son disappeared.
Around the time Luane learned that the clinical trial wasnât going to work out, she called to check in with Jordanâs neurologist. It was an alarming conversation: If the latest combination of drugs Jordan was taking stopped working, the doctor said, they were out of options for treating his seizures.
Luane was despondent. Though not a particularly religious person, she prayed for help. Then she looked at her phone and saw a message had popped up on Facebook. It was from another mother, posted to a group for parents of children with autism. This womanâs son also suffered from seizures. She had taken him to Mexico for stem cell therapy, she wrote. It was the best thing sheâd ever done for him.
Luane began to research online. Stem cell therapy was unorthodox, but so was the cannabis sheâd given him. So were countless other alternative treatments sheâd tried. The best that mainstream doctors were able to do for him clearly wasnât enough.
By the end of the year, sheâd made her decision. She would do this for her son.
As Luane pondered what was best for Jordan, she also assessed her relationship with Kim.Â They separated in 2016. The split wasnât related to the stresses of raising a child with special needs, Luane said â they just werenât working together.Â They still try to stand united when it comes to Jordanâs care.
Luane, though, takes the lead.Â She alternates between enviable, even inconceivable patience with her son â spending hours with him in his playroom, long auburn hair hanging loose around her face as she crawls after him on hands and knees â and sudden spikes of sharp irritation.
Her days are structured entirely around Jordan. She teaches him at home, running him through math and reading but focusing mostly on social skills. She ferries him to a speech therapist up to three times a week.
Some of his care is paid for by state adoption assistance. Kim contributes to their household finances andÂ Luane works part time, editing corporate videos after the children have gone to bed. Itâs also in those quiet hours that she haunts Facebook groups, reaches out to other parents online and investigates new therapies.
Kim wasnât convinced that stem cells were the answer for Jordan. She wasnât comfortable spending tens of thousands of dollars for therapy her sonâs doctors said wouldnât work. Indeed, Kim declined to help pay for the treatment. Luane had to find the money herself.
âIt seems sketchy to go to Mexico. It reeks of a scam to me, from a financial standpoint,â Kim said as the plans were made. âBut I also know that it doesnât matter â if Luane is fixed on something, nothing is going to stop her.â
She understands, though, what drives Luane, she said.
âWhy wouldnât you as a mother do everything you can to heal your child?â
Ask Luane what she hopes the stem cells will do for Jordan, and she says: End the seizures. She doesnât want to be constantly on edge waiting for the drugs to stop working, for the next seizures to grip him and refuse to let go.
But the real answer is:Â everything. Along with calming his seizures, she hopes stem cells will improve his speech and his social skills. That theyâll modulate whatever is causing his slow development. That theyâll repair or replace cells that arenât working right in his gut and his brain.
Scientists say that wonât happen. Though a handful of academic institutions are studying stem cells for autism and epilepsy,Â most are years away from testing therapies in human subjects. Early reports from the Duke autism trial are positive, but they involve just 25 children and are mostly based on parentsâ observations of their kidsâ progress.Â And certainly no single stem cell treatment could improve both conditions.
But Luane, like thousands of other parents, isnât convinced. For her, the conversations sheâs had with other parents, the testimonials sheâs read, carry more weight than the expertsâ arguments.
Luane was anticipating success in MexicoÂ â if not a total cure, which she realized was beyond reasonable expectation, then some kind of improvement. If the first treatment didnât work, that was fine. Other parents and the clinic offering the treatment had told her it might take two or three procedures to see results.
Luane and Jordan interact in the playroom of their Scotts Valley home. Luane spends hours with Jordan every day working on his socialization skills.
Jordanâs initial infusion would cost $15,000, a $5,000 discount from the usual price. Two more sessions would be another $30,000. None would be covered by insurance. To pay for the first round, Luane raised $5,000 through crowdfunding, saved another $5,000 over six months, and put the last $5,000 on a credit card.
She doesnât know where the money for the next two rounds will come from, though she still is raising money through crowdfunding.
âI was being such a good mom, saving for college, and itâs all gone,â she said. âI have no savings anymore. Itâs just gone.â
For most patients and their families, cost is the greatest risk in seeking stem cell treatments: Â Theyâre investing tens of thousands of dollars in a therapy that very likely wonât help. But there are other, more disturbing risks.
At least five women in the United States were blinded after undergoing stem cell therapies for macular degeneration. A man who received multiple stem cell treatments, including one in Mexico, after he suffered a stroke developed a tumor along his spine that his AmericanÂ doctors said could have been caused by the stem cells.
Because stem cell clinics both in the U.S. and abroad are not strictly regulated, thereâs no standard mechanism for recording bad outcomes from treatments. Specific cases only cameÂ to light because the patients sued or the injuries were written up in medical journals.
Less severe side effects and injuries are even less likely to be reported, mainstream doctors say.Â Patients may be at risk of infections from injection therapies. They could have immune reactions to donated tissue, or an allergic response to the stem cells or some other agent in the product theyâre given. In some cases, patients have gone off their regular medications on the advice of stem cell therapy providers.
Luane said sheâd read that stem cell therapies can trigger seizures, which was her gravest concern for Jordan.
âItâs like weâre poking the dragon,â she said.
At 80, William Rader has a long history in the public eye. He was a celebrity psychiatrist back in the 1970s and â80s, regularly appearing on TV talk shows and news programs. He was married for a time to actress Sally Struthers, who played daughter Gloria on the televisionÂ show âAll in the Family.â He wrote an episode of the show, in which Archie Bunker, the head of the family, becomes addicted to amphetamines.
Rader is also among the best known and most widely disparaged stem cell therapy providers. His 2010 self-published book, âBlocked in the U.S.A.: The Stem Cell Miracle,â is dedicated âto all the parents who refused to believe the negative prognoses of current medical wisdom and had the courage, hope and determination to never give up their search to find solutions for their childrenâs illnesses.â
Among some clusters ofÂ patients, Rader is a pioneer, a savior. Among mainstream doctors and scientists, he is described as a fraud and a grifter or, at best, a peddler of false hope who doesnât understandÂ the science heâs pitching.
The Medical Board of California, which regulates doctors in the state, investigated Rader in 2012,Â after three patients said theyâd been given stem cells by him and felt theyâd been misled. Rader, they said, had made claims that he knew were not true, promising them health benefits he knew could not be realized.
At his hearing, Rader denied having treated them at all, saying heâd only advised them.
In its 2014Â decision to revoke his medical license, the board said Raderâs âdishonesty permeates every aspect of his business and practices. âŚ (Raderâs) dishonest conduct can only be described as self-serving, showing poor character, a lack of integrity, and an unwillingness to follow the law.â
Despite losing his license, Rader operates the Tijuana clinic where Luane was taking her son for treatment. He refused to allow The Chronicle to witness the procedure or even enter the clinic. He demanded Luane not reveal exactly how the treatment was administered. At one point, he said heâd treat Jordan for free if Luane stopped speaking to reporters, though his colleagues immediately quashed that offer.
He founded his stem cell company, which after several name changes is now known as Stem Cell of America, in 1995. Its website claims more than 4,000 people have been treated. Patients first were treated in the Bahamas, then, when officials there insisted he perform clinical trials, he moved his operation to the Dominican Republic.
In 2007, he moved again, to Tijuana, where his clinic has been based ever since. Mexico has regulations on appropriate use of stem cells, but they are largely not enforced, according to experts in medical tourism.
William Rader poses with Luane, Jordan and Kai shortly after Jordan was given stem cells at a clinic in Mexico.
âMy first experience with Rader was very early in the stem cell field, probably the late 1990s,â said Evan Snyder, director of the Center for Stem Cells and Regenerative Medicine at the Sanford Burnham Prebys Medical Discovery Institute in La Jolla.
Parents had approached Snyder, who is also a pediatrician, asking about a doctor selling stem cells: Was this science real? Could it help their children?
Snyder said he tried to remain open-minded at first. Rader was making bold claims, but everyone back then was excited about stem cells. Even the most outlandish theories seemed possible, and the science disproving them didnât yet exist.
But when Rader refused to engage in any scientific exchanges â to share data or research heâd collected or compare his work with his peers â Snyder grew skeptical, then concerned.
Later, Rader would be the subject of investigative reports by the BBC and â60 Minutes,â and Snyder became one of his most vocal critics. âHe would always say I was on a witch hunt,â Snyder said.
Luane had done her research and knew all about Raderâs past â the media exposes, the state investigation, the ban from practicing medicine. At first, what she learned troubled her. But soon she saw things differently.
Here was a doctor whoâd been punished for providing the very therapy she sought for her son. In a way, it made his clinic even more appealing. Rader was willing to risk his career for this therapy, she reasoned. He must believe it works.
âItâs this whole other controversy, how weâre taking him to this guy whoâs lost his medical license,â Luane said. âBut Iâm going to choose whatâs going to work for Jordan.â
Jordan waits for the monorail to arrive during a trip to Disneyland before his family went to Mexico, where he received an unproven stem cell therapy.
Luane spent months weighing where to have Jordan treated. She could have taken him to one of a handful of clinics in California that say theyâll use fat or bone marrow stem cells to treat autism or epilepsy. She could have gone to the Stem Cell Institute in Panama, a center popular among American clients that uses stem cells from umbilical cord tissue. She seriously considered a clinic in Ukraine.
Eventually she decided Jordan would benefit most from a treatment using fetal stem cells. It seemed to hold the most promise â that was what Rader said, and what sheâd heard from other parents of children like Jordan.
Raderâs Tijuana clinic specializes in fetal stem cells. In his book, Rader says he first learned about fetal cells from scientists in Ukraine, and spent time there in the 1990s studying the cells and how to use them.
On his website, Rader says that fetal stem cells are able to become any other type of cell in the body. He also describes them as âimmune privileged,â which means they wonât be rejected by the patientâs immune system. There is no definitive evidence for either claim, experts say.
American scientists are studying fetal stem cells for a handful of conditions. But because they are drawn from aborted fetuses, their use is controversial in many parts of the world, including the United States.
Again, the controversy didnât deter Luane. If fetal stem cells were Jordanâs best chance, âI have to go,â she said.
Rader runs the administrative side of his clinic business from an office in Southern California. Thatâs where he takes phone calls from patients and their families, where he soothes their anxieties, answers their questions and points them to research that he says backs up his work.
He travels to Tijuana to oversee the treatments but doesnât administer them himself. He didnât meet Luane or Jordan before they went to Mexico. He never saw Jordanâs complete medical records, never gave him an exam.
While Rader would not answer questions about the procedure given to Jordan or about his work with stem cells, his companyâs website describes the treatment. Patients are first given a dose of the stem cells via an intravenous infusion. Then they get multiple injections, into the stomach, thighs or arms.
The mechanics of the treatments are simple enough. But the claims about what the stem cells do once theyâre released into the bloodstream are excessive, and backed by little or no science.
Once injected and infused, the website says, the stem cells âwill travel throughout the body, detecting damaged cells and tissue and attempts (sic) to restore them. The fetal stem cells can also stimulate existing normal cells and tissues to operate at a higher level of function, boosting the bodyâs own repair mechanisms to aid in the healing process. These highly adaptive cells then remain in the body, continually locating and repairing any damage they encounter. â
It adds: âThere are no known negative side effects.â
The van carrying Jordan and his family let them off in front of an office park and hotel building called Plaza Agua Caliente, less than 3Â miles from the U.S. border. Oxygen Therapy, the medical office where Raderâs patients are treated, is on the ground floor. Typically, Rader leases the office one Saturday a month. Three or four more stem cell clinics are located nearby.
OnÂ the mid-January morningÂ Jordan and his family were there, vans with the Oxygen logo stopped repeatedly in front of the building and unloaded patients: older people using canes and walkers, a child in a wheelchair.
Inside, as Kim described it, the Oxygen office resembled a day spa more than a medical clinic. Soft instrumental music played in the exam rooms. A sign at the entrance advertised massages and facial treatments.
âImmaculate,â Carol Beck, Jordanâs grandmother, said of the space.
Oxygen Therapy is the Tijuana clinic where William Rader, a former celebrity psychiatrist whose medical license was revoked, sends patients for stem cell therapy. Jordan received stem cells there on his 9th birthday.
In the waiting room, they chatted with other patients and families. A frail-looking woman who had been in the van with them said she it was her first visit, too.Â A man whose young daughter is disabled by a rare neurological condition told them heâd been bringing her to the clinic for years.
Rader greeted Jordan and the family soon after they arrived, stopping by their exam room to introduce himself and answer a few questions about the therapy.
Kim, whoâd been dubious about the stem cell therapy, was impressed. The technicians who treated Jordan didnât speak much English, but they were warm and gentle. They took several tries to get the intravenous line started, but that often happens in the emergency rooms and doctorsâ offices in the United States, Kim said.
The whole family crowded into an exam room for the procedure â Kim and Kai perched on a gurney, Jordan tucked into Luaneâs lap in an armchair. He squirmed and fussed when they injected the stem cells into his thighs, four shots total after the IV. It was all over in an hour.
When he returned to ask how things went, Rader hugged Luane and Kim and posed for pictures with the family. He told them to call his cell phone any time.
An Oxygen Therapy van is parked outside the shopping center in Tijuana where the clinic is located.
It was precisely the same scenario that state medical board investigators described in the report that led to Raderâs license being revoked four years before â from the way the stem cells are administered to the parting hugs and assurances to the patientâs family.
Though told he can no longer practice medicine, Rader apparently hasnât changed his operation at all.
âI actually thought the state had successfully shut him down,â said Snyder, the La Jolla researcher. âObviously heâs Whac-a-Mole.â
With Jordanâs treatment done, the family walked back out through the mall, down the steps to the clinic vans lined up at the curb. By 8:30 a.m. they were on their way back across the border.
Back at the hotel in San Diego, Luane couldnât help herself: She was already looking for signs. Was there anything different in Jordanâs behavior, in his language, in his posture or his smile? When she heard that heâd spontaneously said âelevatorâ â a big word for a boy usually limited to one or two syllables â she wondered out loud: âCould it happen that fast?â
Probably not, she quickly decided. âPeople talk about feeling a surge of energy 30 minutes after a treatment. But the real results come in three months.â She spoke with authority, reciting what sheâd learned from posts by parents and patients online.
âI donât think stem cells are going to be a magic bullet,â Luane said. âI just want to give him every chance.â
All afternoon, the family buzzed with the punchy energy that comes from too little sleep and too much excitement. They ate brunch, singing âHappy Birthdayâ to Jordan over gluten-free pancakes.
Later, Kim took Jordan and Kai to a playground to burn off some energy. She held Jordanâs narrow wrists in her hands while he climbed up her legs and twisted into a somersault, dangling beneath her, grinning and laughing.
She just wants Jordan to grow, Kim said. If the stem cells do one thing for him, she hopes itâs that.
âIâm really looking forward to when heâs too heavy for me to do this anymore,â she said, smiling at his upside-down face.
By 7 p.m., Luane was wiped but the children were still amped. Jordan traipsed across the hotel room, pushing his grandmotherâs walker from the window to the bathroom and back again, over and over. When told it was time for pajamas, he ripped the pillows and covers off the bed and flicked the lights on and off until Luane snapped at him to stop.
âNo, no bed! No, no sleep!â Jordan shrieked.
âYouâve been up since 4 in the morning,â Luane told him, calmly pulling the covers back on the bed, sliding the pillows back in place. When he ran to the bathroom, she called out his first and middle names in a sing-song voice: âMr. Jordan Sky, paging Mr. Jordan Sky.â
Finally she managed to get him into his pajamas. She attached the oxygen monitor to his big toe and sat with him while he squirmed a while longer.
âItâs something moms talk about,â Luane said. âThey donât sleep for a month or two after stem cells.â
She said it pleasantly, as though his restlessness, his refusal to calm down and sleep, was another sign. As though this meant something was happening.
As though she was already witnessing his rebirth.
Luane carries Jordan into the kitchen of their Scotts Valley home to brush his teeth. He sometimes screams and struggles through this morning routine.
Five months after theyâd returned from Mexico, Luane returned to Raderâs clinic. She went with just her mom this time. Carol Beck has knee pain from an old car accident that can make walking excruciating. She also has a heart condition that may be related to the pain medication she takes, Luane said.
She, too, believed stem cells could heal her.
Since his treatment, Jordan has been to the emergency room once for seizures. It was awful, but not unexpected, Luane said. She doesnât think of it as a setback, because there is this: Heâs grown 2 inches and gained 5 pounds. And there are other, subtle, signs that heâs changed since January.
Once, he took Luaneâs Ugg boots into the backyard and filled them with sand. Another time, while spraying water from a hose in the backyard, he decided to push the nozzle through the dog -door and into their dining room. While she was on the phone one day, he removed all of the paper from Luaneâs printer and tore it into pieces that he tossed around the playroom like confetti.
Heâs always been a handful, but now, itâs like heâs doing it on purpose.
âHe kind of knows what being a brat is now,â Luane says, fondly. His mischief feels like progress. Sheâs already thinking about when she can bring him to Mexico again, how sheâll raise moneyÂ for his next stem cell therapy.
Itâs late morningÂ one day in June and Jordan woke up with a summer cold. Heâs cranky and willful, his brown hair sticking up on the back of his head. Heâs still in his pajamas, the same ones he wore in San Diego, but then they were loose. Now they fit.
For a while, they lie on the playroom floor together, moving toy horses in and out of a stable. Luane practices speech with him, making words into sentences that he repeats back to her one at a time.
When Luane says they have to leave to pick up Kai at school, Jordan shouts no. He shoves play plastic tiles from the coffee table to the floor, throws the empty box at his mother. Luane wrestles him into the minivan.
Most days, when heâs not sick, itâs obvious that Jordan has improved, she says. Luane was supposed to send Rader updates on Jordan three months and six months after his treatment. They asked her for a list of all the ways heâs grown. But sheâs bad at keeping records, she admits. She forgets to write things down.
But what she knows: Jordan speaks in five-word sentences. He uses gerunds â running, wanting, eating. His words are clearer. Heâs learning to whistle. Heâs more social, heâs stronger. Heâs had his first successful playdate with a friend.
âYou canât deny that stem cells have done something,â she says.
And who knows him better than Luane? Who is better equipped to notice that his Bâs and his Pâs are sharper, that his eyes are more expressive, that heâs developed a naughty streak?
Who, though, most wants to believe that things are changing, to see something that wasnât there before?
Who wants Jordan to get better, more than his mother?
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