Stephanie Innes's favorite stories of 2014

Jessica Cox spent years fuming about not being able to ride a bike.

Born without arms, the 31-year-old Tucson resident is relentlessly competitive. She remembers “having a fit” in a park at the age of 12 when she couldn’t ride as fast as her older siblings. She tried training wheels, a tricycle and prosthetic arms. Nothing was good enough.

“I was furious I couldn’t ride a bike like my brother and sister,” said Cox, who is a motivational speaker and disability-rights activist.

This Saturday is time for vindication. Cox will be riding the 40-mile portion of El Tour de Tucson in a recumbent bicycle she steers with her rib cage.

“It has been a process over the course of years, getting to this level,” Cox said. “It was not a question of could or couldn’t, it was how can I make this happen?”

Cox has employed that same line of thinking to everything she has tackled in her life, often to the disbelief of others. She uses her feet as hands, for everything from putting in contact lenses to driving a car and pumping gas. She’s flown a plane on her own, regularly competes in tae kwon do, plays piano and has completed a degree in psychology at the University of Arizona.

The way Cox saw the world as she grew up, her legs and feet were wired to her brain the same way other people use their arms. She did have to get through what she now calls “the anger of childhood” as she faced obstacles.

But anger was her way — not sadness or self-pity. She is happy about that.

“The anger gave me the drive to do a lot of things,” she said. “And my parents were always there for me, able to facilitate.”

Riding a bike was never really the problem. It was riding it fast that was the issue. A few years ago, Cox shifted her thinking from wanting to ride an upright bike. She used to ride a large tricycle, but it tipped over and she never felt she could go fast enough.

Once she got comfortable with the idea of a three-wheel recumbent bike, the transformation began. Getting married also helped. Her husband, Patrick Chamberlain, 30, encourages his wife.

“Originally our conversation was about running. But Jessica’s knees are so important to her life, and we worried about long-term implications,” Chamberlain said.

Chamberlain got his own recumbent bike, and the couple began riding together. Their bikes have flags on the back to warn drivers who might not see them because they sit so low. Chamberlain once had to get off his bike, stand up and wave his arms in front of a driver who was about to turn right and clearly did not see she was going to hit his wife. He intervened just in time.

“We have to be defensive and stick together,” Cox said. “I was scared of the road. We don’t cycle at night or even at sunset — just in broad daylight.”

Cox’s recumbent bicycle from Texas-based Scarab Trikes, which has a brake she operates with her foot, has been custom-fitted to include an electric, push-button gear changer from the local HMS Bikes and two steering handles from a Tucson company that adapts vehicles for people with special needs. The handles sit vertically alongside her torso. She uses her rib cage to lean on the handles to steer the bike left and right.

Cox has posted a video of herself cycling on YouTube and wants to be an example to kids who are trying to navigate life without arms. She and Chamberlain often ride from their northwest-side home to the Rillito River path.

“Three moms have already contacted me,” she said.

Cox will not be the first person with physical challenges to ride in an El Tour event. El Tour spokeswoman Marilyn Hall says people who don’t have use of their legs always ride hand cycles, and in the past visually impaired people have ridden in the back seat of a tandem bicycle. The only rule is that no motorized bicycles are allowed, Hall said.

“Jessica is a wonderful story,” Hall said. “She is very fit and athletic, and just amazing.”

Former U.S. Rep. Gabrielle Giffords of Tucson, who has physical challenges as the result of being shot through the brain in 2011, recently told USA Today that she wanted to ride her recumbent bike in this year’s El Tour. A spokesperson for Giffords’ political action committee did not return phone or text messages or an email asking about whether Giffords is still planning to ride.

Cox fashioned herself a water bottle that hangs around her neck and took the clips off her cycling shoes because it was impractical to unclip every time she wanted to change gears or brake.

Since their recumbent bikes are heavy, the couple usually ride 10 to 12 miles per hour, and Chamberlain is concerned about finishing the 40-mile event, which starts at noon. He worries they might finish after the course closes at 5 p.m.

But his wife isn’t fretting. She talks excitedly about the times when she is able to ride fast.

“It is an awesome feeling of freedom, with the air blowing in your face. I am a speed demon,” she said. “I’m kind of making up for all those years.”

Alfred Bracamonte had two goals this week — to run a 5K and to have a clean brain scan.

Though he wasn’t feeling 100 percent and hadn’t trained, the 44-year-old Tucson heavy-equipment operator and former Marine completed Sunday’s 5K run in just under 40 minutes.

He gave a thumbs up to his wife, Laura Bracamonte, as he crossed the finish line, then collected a medal for completing all three races of the local Gabe Zimmerman Triple Crown running series.

Goal No. 1, check.

On Thursday morning, Alfred and his wife walked into the Center for Neurosciences in Tucson, where Alfred would have his first MRI since completing chemotherapy in August.

The couple fended off dread and anxiety by talking about their planned trip to Las Vegas on Nov. 3 — the 25th anniversary of their first date — to renew their vows.

They met as teenagers in Superior. On their first date, they shared a slice of Edwardo’s pizza.

Early signs of a problem

Looking back, the signs were there long before Alfred’s horrific diagnosis of an anaplastic astrocytoma — a Grade 3 malignant brain tumor with no known cause that is highly invasive and difficult to cure.

In 2013, he began veering to his left side when he did his long-distance runs.

He also had severe fatigue, as well as brief episodes where he’d go still, stare ahead, and react to nothing around him. During those episodes, it felt like waves of electricity were shooting through his arm. He tasted metal in his mouth.

When he ran the San Diego Rock ’n’ Roll Marathon in June of that year, his time was 4 hours, 56 minutes, 52 seconds, which was about 30 minutes slower than what he’d expected.

Weeks later, he had another staring episode while changing water meters in Tubac and narrowly missed falling head first into a deep ditch.

Slow-growing cancer

On the morning of July 9, 2013, Alfred got considerably worse.

“It was summer, and he’d been working crazy hours, getting up at 2 or 3 in the morning,” said Laura, 39, who works as a claims processor. “I came into the kitchen to put his lunch together, and I could hear him in the bathroom. He was violently vomiting. I’d never heard him do that before. I told him he was staying home.”

Laura thought the problem must be her husband’s blood-pressure medicine. She set up an appointment with their nurse practitioner, who told Laura that Alfred seemed to be on the verge of having a stroke.

By 6 p.m., they were in the emergency room at Tucson Medical Center. By 4:30 a.m., the bad news had been delivered. Alfred was not having a stroke: He had a 2½-inch malignant brain tumor in his left temporal lobe. Surgery was scheduled for a week later.

“They said that type of tumor could have been growing for 20 years,” Laura said. “It’s slow-growing. But Grade 3 is bad. They gave him three years to live.”

About 25 percent of patients with that type of tumor are still alive after five years, said Alfred’s neurosurgeon, Dr. Abhay Sanan. Few live beyond 10 years. There are reports of cures, but they are rare.

One positive for Alfred was that the tumor was only on the left side. When brain tumors cross hemispheres, the situation is much worse, Sanan said.

“That’s my honey”

The Bracamonte house in southwest Tucson stands out on the block for its orange lights, cobwebs, skeletons, ghosts and yellow caution tape. Alfred spent hours putting it together in early October.

Unable to work indefinitely, Alfred embraces taking care of the house by cleaning, mowing the lawn and doing other landscaping. He helps the neighbors out, too. And he loves decorating the yard.

Though he wants to go back to work, his wife says his mind and body are not in sync right now. He loses his balance a lot and admits to sometimes feeling trapped inside his own body.

“I want to say something, but a different thing comes out,” he said.

When he woke up from surgery, he knew the people around him were family and friends, but he called them the wrong names.

“My concern was that he wouldn’t know who I was when he woke up. He looked at me. His pet name for me is ‘honey.’ He looked at me and said, ‘That’s my honey,’” Laura said.

“As the days went on, he got better ... For the most part, I can figure out what he wants to say.”

Some other changes came after his surgery: In addition to losing his balance, he couldn’t tolerate bright lights, noise or loud music. His affinity for heavy metal turned into a love of gospel music.

Power of prayer

Since the tumor had woven itself into his brain in ways that made it difficult to remove surgically, Alfred was assigned a regimen of radiation, followed up by a year of oral chemotherapy.

Alfred began working not only with Sanan, but also a team of doctors, including neuro-oncologist Dr. Michael Badruddoja, who is the only neuro-oncologist in Southern Arizona, and with radiation oncologist Dr. Lisa Hazard.

When Laura talks about that time now, she gets choked up. Alfred cries. The reason is that they are remembering what they decided back then.

Alfred decided that, in spite of his illness, he wanted to run the Las Vegas Rock ’n’ Roll Half Marathon, scheduled for Nov. 16.

Alfred completed radiation in the third week of September. His first follow-up MRI in October showed the tumor had shrunk.

The couple attends Faith Tabernacle Church in central Tucson and believes in the power of prayer.

“We have a very strong belief and faith in God,” Laura said. “It hasn’t been easy by any means, but we feel God is with us and that every struggle, he has helped us get through.”

With the help of his nephew, who stayed by his side the whole way, Alfred ran the Las Vegas half-marathon in 3 hours, 48 minutes.

“My feet were hurting. My whole body was in pain,” Alfred said.

“He’s like my Forrest Gump,” Laura said. “He just gets up and goes.”

By December, Alfred’s tumor was barely detectable. He then started another cycle of chemotherapy that ended in August. Now Alfred must get an MRI every eight weeks to see whether there’s any tumor growth.

“There’s a 50-50 chance of it returning. It’s all a matter of how the next year goes,” Laura said.

Looking for a smile

At 11:30 a.m. on Thursday, Alfred and Laura walked into the Center for Neurosciences for Alfred’s first MRI since finishing chemo. The MRI took about an hour. Then they waited.

Having any medical test and then waiting for results can be difficult. But when someone is going through a test to determine whether their cancer has returned, it can be excruciating.

“You are holding your breath,” Laura said. “You are looking for the doctor to come in the room and you are looking at their expression, looking for the smile.”

This time, there was a smile. No new tumor growth was detected. Laura says her husband’s new nickname is “Ned” — No Evidence of Disease.

Goal No. 2, check.

“I think from his perspective, it’s as good as it could possibly be. Functionally, he’s doing spectacular,” Sanan said. “He has the right attitude, and has had a great response to treatment.”

There will be more MRIs in the future. But for now, the couple has a trip to Las Vegas to organize. And Alfred wants to start entering mud runs.

Each has high praise for the other. Laura says Alfred is the strongest person she knows. Alfred is effusive about his love for Laura.

Soon the couple will have more pictures to add to the collages that line the walls of their home, chronicling Alfred’s illness and recovery.

Alfred is smiling in nearly all the photos. At the end of the most recently completed collage, there’s a quotation: “The best days are yet to come.”

The Tucson woman who earned nearly $6 million as the whistleblower who uncovered overbilling at the Carondelet Health Network is launching her own effort to prevent health-care fraud.

“Providers are turning their heads, not wanting to hear about fraud, waste and abuse,” Jacqueline Nash Bloink said in an interview last week.

But if more people cared, she said, the nation could “plug this gaping hole” and stop money from gushing out of the federal Medicare and the state Medicaid systems.

The whistleblower lawsuit Bloink filed under the federal False Claims Act accused Carondelet of knowingly engaging in fraudulent billing and concealing its obligation to pay money back.

The U.S. Attorney’s Office, which investigated the case, announced the settlement in August and said the alleged fraud occurred for nearly seven years between 2004 and 2011.

Carondelet settled the case for $35 million — the largest payout under the federal False Claims Act in Arizona history.

The settlement was not an admission of liability by Carondelet and hospital officials blamed the problem on a failure to meet “technical Medicare/Medicaid billing requirements.” They say they addressed the issue as soon as they became aware of it.

When the settlement was announced, the local Catholic not-for-profit health network, which includes three Southern Arizona hospitals, said there were never any allegations that patients were harmed or had their care compromised due to the problems identified.

Bloink, a 53-year-old certified medical reimbursement specialist, worked for Tucson-based Carondelet as a corporate responsibility coordinator for one year, between 2010 and 2011.

During that time, court documents show she found billing discrepancies involving patients enrolled in Medicare, Medicaid and the Federal Employees Health Benefit Program.

“Many ‘whistleblowers’ go underground after their ordeal is over,” Bloink wrote in a recent open letter to the community titled “Healthcare fraud in our backyard.”

“I intend to use my newly obtained silver hair to try and help our healthcare system by being open about fraud and discussing ways to prevent it.”

Bloink’s legal action, filed under seal in 2011, cited insufficient documentation to support billings for inpatient rehabilitation services at Carondelet St. Joseph’s and St. Mary’s hospitals in Tucson between April 2004 and December 2011.

“Inpatient rehabilitation services are very costly to taxpayers, and it is critical that these federal dollars be reserved only for those qualified patients who need the intense rehabilitation therapy services provided in an inpatient setting,” U.S. Attorney for Arizona John S. Leonardo said at the time of the settlement.

Carondelet said that in 2011, the network put new protocols and processes in place to correct the documentation issues, and that prior to the settlement, it voluntarily repaid about $24 million to Medicare and Medicaid in 2012.

Billing for services that aren’t provided is a common and lucrative form of billing abuse known as “upcoding” that Patrick Burns, co-director of the Washington, D.C.-based Taxpayers Against Fraud Education Fund, compares to “providing chicken and billing for steak.”

Burns’ organization says the federal False Claims Act is the most effective tool U.S. taxpayers have to recover the billions of dollars stolen through fraud every year. Five hundred false claims suits were filed by private citizens last year concerning the U.S. Department of Health and Human Services, according to the U.S. Department of Justice. Fewer than 150 suits were settled, Burns said.

“Whistleblowers are force multipliers for the government in catching fraud,” he said. “They understand the company, how the billing schemes work. They can see things the public can’t see.

“The system itself is so complicated that you really can’t understand it unless you have whistleblowers. They are guides to secret knowledge.”

He believes there’s lots more health-care-spending abuse than what the case data reflects. Whistleblower cases are difficult to win and usually are successful only when the money involved is more than $10 million, he said. Also, many people are too afraid to blow the whistle on their employer.

“People take enormous risks coming forward. For your professional career in the future, you are committing to a path in which, in almost every case, you are identified,” Bloink’s Philadelphia-based attorney David Caputo said.

Whistleblower gets 15-25%

The whistleblower provisions in the federal law, often referred to as qui tam, allow private citizens to bring civil actions on behalf of the U.S. and share in any recovery obtained. Qui tam settlements, considered recouped federal dollars, brought in $2.6 billion in settlements and judgments in 2013, the U.S. Justice Department says.

Including those qui tam cases, the government recovered a total of $4.3 billion in health-care fraud cases and proceedings last year, federal numbers show.

The amount payable to a qui tam whistleblower under the False Claims Act is determined by statute and depends on whether the U.S. intervenes in the case. For intervened cases like Bloink’s, the whistleblower is entitled to 15 to 25 percent of any recovery.

Those provisions are designed to encourage whistleblowers to come forward and report fraud against government programs, said Cosme Lopez, a spokesman for the U.S. Attorney’s Office in Arizona. Whistleblowers may come forward either formally through a lawyer, or informally through hotlines provided by federal agencies.

“Whistleblowers — who at times have valuable, inside information — are an important part of the government’s efforts to detect and remedy fraud and abuse, and our office welcomes and appreciates their efforts,” he said.

Bloink has been training in the highly specialized field of compliance since the 1990s. She has launched her own campaign to educate people in the health industry about how to be watchdogs for billing fraud. In January she’ll speak to a local group from the Association of Certified Fraud Examiners, and in February she’ll speak to a group from the same organization in Los Angeles.

The divorced mother of two believes most providers don’t set out to commit fraud, waste or abuse. Many times they are unaware that what they are doing falls into that category, she said. For example, a provider may bill all patients as “new patients,” which means a higher reimbursement rate.

But the bottom line is that if the provider’s name is on the insurance claim form, the provider is the one held accountable, she said. “Instead of being reactive, perhaps Tucson should show the country that they are proactive and educate the medical community about fraud, waste and abuse, … starting with our medical students and members of our medical society,” she said.

She’s contacted the local medical society, medical and law schools and politicians but so far has found little interest, she says. Burns says that’s not unusual.

“Whistleblowers are good people and they are doing the right thing. But there’s always this little bit of naiveté,” Burns said. “They believe that companies are interested in doing the right thing.”

Hall of Shame in the works

Some companies are repeat offenders. Burns’ group is making a Hall of Shame and top on its list in the health arena is Tenet Healthcare Corp., a Dallas-based company that is in talks to become a majority owner of the Carondelet Health Network.

In July Tenet and California-based Dignity Health signed a letter of intent to own and operate the local network. Current Carondelet Health Network owners from Missouri-based Ascension would retain a minority interest in the chain.

Burns notes that in 1994, under the name National Medical Enterprises, Tenet made national headlines when it agreed to pay $379 million in criminal fines, civil damages, and penalties to settle a False Claims Act case in which the company was allegedly paying kickbacks and engaging in fraud at psychiatric and substance abuse hospitals in more than 30 states.

Following payment of that record health-care fraud settlement, National Medical Enterprises changed its name to Tenet.

In July 2006, Tenet agreed to pay the federal government $900 million for billing violations that included kickbacks, upcoding and bill padding.

The odds were against 44-year-old Red Rock resident Lauren Clifton last month when she became overwhelmed by a sharp headache while getting her son ready for school.

Unbeknownst to Lauren, a six millimeter aneurysm had ruptured in the left side of her brain, causing a subarachnoid hemorrhage that gave her a 50 percent chance of survival.

An aneurysm is similar to a blister that occurs in a weakened spot in a blood vessel. In many cases it’s fine to live with an aneurysm, and millions of Americans do.

Yet when the blood vessels become too weak, sometimes because of the large size of the aneurysm, it ruptures and can be fatal.

Even when people do survive a burst aneurysm, the majority have residual neurological deficits such as difficulty with memory, walking and talking, her neurosurgeon Dr. Emun Abdu said Friday as she checked on Lauren in her room at the Carondelet Neurological Institute, which is part of Carondelet St. Joseph’s Hospital, 350 N. Wilmot Road.

About 30,000 people in the United States suffer a ruptured brain aneurysm every year, which works out to about 100 in the Tucson area annually.

The Carondelet Neurological Institute has an aneurysm support group that meets every Tuesday, but Lauren will have little reason to attend. That she both survived and has no adverse effects was a combination of timing, medical response and luck. She even still has most of her hair.

Lauren, who works as a cashier at Sprouts in Oro Valley, has no risk factors for an aneurysm — she doesn’t smoke, she’s not elderly and she has no family history.

Not surprisingly, neither Lauren nor her family knew what was happening when she became unexpectedly ill the morning of Aug. 27.

The pain began in her right shoulder, and moved through her neck to the left side of her head. Her vision blurred and she called out to her husband, Chris Clifton. Chris found his wife standing up, heavily sweating and saying she did not feel well.

“I had no idea what was going on,” Chris said. “I was trying to wipe the sweat off her forehead and then she started going into a seizure. Her eyes were rolling into the back of her head.”

Chris asked the couple’s 15-year-old daughter to call 911.

Paramedics took Lauren to Northwest Medical Center, and from there she was transferred to the neurological institute at Carondelet St. Joseph’s Hospital.

While some aneurysms can be treated by reaching the ruptured vessel with a catheter through the groin area, Abdu decided that Lauren’s case was too risky for that. So she did brain surgery, temporarily removing a portion of Lauren’s skull.

“Her aneurysm was what you call a wide balloon, so if you try to plug it up from the inside you would plug up the other normal vessels,” Abdu said. “So that would be too dangerous and we took her to surgery instead.”

Lauren remembers very little about that day, though she does recall meeting Abdu before her surgery.

“I remember her saying, ‘You have a 50 percent chance of living’,” Lauren said. “I am very emotional usually but she told me she’d take care of me and it felt like she was family. I prayed to God and the angels and felt that whatever was meant to be was meant to be. Of course, I was also on medication.”

In surgery, Abdu put in a clamp around the burst vessel and made sure none of the other vessels were closed off by doing a CT scan during the operation.

Four days after surgery, Lauren stopped talking and was having trouble moving her right side. A scan showed decreased blood flow going to the left side of her brain. Using a catheter inserted through the groin, Abdu opened up the vessels and Lauren has not had a problem since.

“That’s why someone who has ruptured, you don’t send them home. They have to be cared for in the hospital in case they go into spasm,” Abdu said.

It’s impossible to predict an aneurysm, though Abdu says someone with a family history should see a physician. Aneurysms are three times more common in women, and the risk increases with age. And smoking is like a growth hormone for aneurysms because it weakens the blood vessels, she said.

Often the condition is caught when people are having a workup for something else. “You see it more often in people in their 50s, 60s and 70s,” Abdu said. “The only way you screen it is with all these invasive studies, so you are not going to subject everybody for something that is so rare. That being said, if you have a strong family history of brain aneurysms, you should really talk to your doctor about that.”

Abdu is watching another aneurysm she found on the right side of Lauren’s brain, but she has no plans to treat it at the moment. “There are plenty of aneurysms that I just watch. If it’s three millimeters at a certain location, the chance of bleeding is so low,” Abdu said.

An estimated six million people in the United States have an unruptured brain aneurysm, or one in every 50 people, according to the national Brain Aneurysm Foundation.

When the aneurysm does rupture, Abdu says surgery is needed within 24 hours.

Chris Clifton says friends and family prayed for his wife every day.

“Our youngest is only seven, so he doesn’t really comprehend what happened,” Chris said. “Our 15-year-old knows exactly what is going on. She goes through different waves when she gets really emotional.”

Once she survived the surgery, Chris was ready for Lauren to come back with neurological problems. But it seems life is not going to change as much as he’d thought.

Hayden Monroe Poeling seemed healthy when she was born the afternoon of April 8 at Northwest Medical Center.

Her mother, Kimberly Poeling, 28 and dad Keith Poeling, 33, were looking forward to Hayden coming home. So were Keith’s two daughters from his previous marriage, who live with them part time. Hayden’s big brother, Howard, 3, wasn’t quite sure what was happening, but it all seemed exciting.

The family had Hayden’s bassinet and room ready at their rental home in the Picture Rocks area just outside Tucson.

But within hours after she was born, Hayden’s7-pound body began to periodically stiffen, and she’d clench her fists and close her eyes. The nurses said she might just be getting used to being outside the womb.

But Kimberly knew something was wrong. When they went home the day after Hayden’s birth, she began taking videos of the episodes.

And so began the family’s life-changing journey to get help for Hayden. The body stiffening Kimberly had observed turned out to be small seizures that got bigger and increased over time to more than 100 per day.

The Poelings had no experience with the medical system. Kimberly had never been admitted to a hospital for any reason other than birthing her children.

There were a lot of surprises. They learned the importance of doing their own research and advocacy in the face of a serious medical diagnosis. They learned that other parents whose children had the same condition were their most valuable resource. And they learned that Hayden’s best chance at a better life was a risky procedure where half of her brain would be removed or disconnected.

One of their biggest surprises was that Hayden couldn’t get the help she needed in her hometown, so her surgery and follow-up care were done in Phoenix. The family is now considering moving there.

•••

Hayden’s diagnosis came when she was 10 days old: hemimegalencephaly, an extremely rare condition where one side of the brain grows larger than the other. The cause is unknown.

A seizure is like a spark in the brain, similar to an electrical overload. It starts in one area and spreads throughout the brain. Hayden’s seizures started out mild because as a newborn, she had not formed many brain connections. But as her brain started to develop, the seizures changed.

They were imprinting in Hayden’s developing brain much the way the brain of someone learning to play the piano imprints doing scales. Each seizure created new pathways and new connections, and the seizures intensified.

Hayden’s entire body would jerk, sometimes her limbs would move rhythmically. Her blue eyes would open wide. Her lips would purse, she’d scrunch up her face and her whole body would go tense. The seizures happened one after the next, lasting a minute, then two minutes, then longer. One lasted for 20 minutes.

The amount of medication she was getting to calm the brain was preventing normal development, as were the seizures themselves. Kimberly and Keith felt like they didn’t know the real Hayden because of the medicine. She never smiled.

“There are things called critical moments of development that if you miss those or they are not inset well, you are never able to get them back,” said Dr. P. David Adelson, director of the Barrow Neurological Institute at Phoenix Children’s Hospital.

A child needs to learn to recognize faces, sounds, to learn to move.

Hayden was missing out.

•••

Medication didn’t stop the seizures. Kimberly says the neurologists she consulted in Tucson suggested she try more.

She wanted other options. And that maternal instinct was right, Adelson said.

“Once they’ve failed two or three medications, the chance of significant improvement is less than 1 percent,” he said. “This child went quickly through two or three and trying more on her was going to be to the detriment of the child.”

Kimberly says the advice she received in Tucson was to wait until Hayden was older than a year for the surgery. But the more she talked with other parents she met through a Facebook group for parents of children with hemimegalencephaly, the more she became convinced Hayden’s outcome would be better with surgery before her first birthday.

While Tucson has neurosurgeons who operate on children, Hayden’s case required a surgeon with specialized skills for pediatric patients — but no board-certified, fellowship-trained pediatric neurosurgeons practice here. The American Board of Pediatric Neurological Surgery says there are six in the Phoenix area and one in Flagstaff.

The UA Medical Center, Tucson’s only academic medical center, would like to offer pediatric neurosurgery locally in the near future, said Dr. G. Michael Lemole, Jr., chief of the division of neurosurgery at the UA.

It’s not unusual for a midsize city like Tucson to be without a pediatric neurosurgeon, said Dr. Michael D. Partington, chair of the section on neurosurgery for the American Academy of Pediatrics. While the U.S. has 3,000 to 4,000 practicing neurosurgeons, only about 200 are pediatric neurosurgeons, said Partington, a pediatric neurosurgeon at Gillette Children’s Specialty Healthcare in St. Paul, Minnesota. Families often travel to see him from North Dakota and Michigan, he said.

The Children’s Hospital Association has identified pediatric neurosurgeons as a shortage specialty in the U.S. That’s partly because of insufficient graduate medical education money for residencies in children’s hospitals, said Jim Kaufman, vice president of public policy for the D.C-based association. Also, a medical student graduating with $200,000 in student debt might choose an adult specialty over pediatrics because the pay is better, he said.

Children’s hospitals serve primarily patients covered by Medicaid, which on a national level reimburses at a rate that is 30 percent lower than Medicare, Kaufman said.

“Pediatric neurosurgery is one of the concerns we have on Capitol Hill. They talk about the physician workforce and say there are too many specialists, but in pediatrics we don’t have enough,” he said.

Proposed legislation in Congress would improve care coordination for children with complex medical cases by creating a national framework to minimize the need for families like the Poelings to travel and move to find care for their children, Kaufman said.

•••

Kimberly got referrals to two neurosurgeons in the Phoenix area. The first was Adelson, and her appointment with him was July 7. She couldn’t get an appointment with the other neurosurgeon until late August.

Adelson has been in practice for 20 years and has done about 25 hemispherotomies, but usually on children who suffered a stroke. He said has done about six of the surgeries on children with hemimegalencephaly.

Adelson recommended what’s called a cerebral hemispherotomy, where he would disconnect the left hemisphere from the right and from the deep structures, and leave the affected part in Hayden’s skull. That way the abnormal brain would not affect the rest of the body. That surgery is less traumatic than a hemispherectomy, where an entire side of the brain is disconnected and removed.

Hemispherectomies at one time were standard for babies with Hayden’s condition. But leaving the affected brain in the child’s skull is now preferred for a small child, Adelson said. There is a smaller incision, less blood loss during surgery and a decreased chance of hydrocephalus (water on the brain). Infants who get hemispherotomies have better outcomes, he said.

Adelson recommended surgery as soon as possible.

“If we waited until 18 to 24 months of age, the chance of this child having any sort of normal development was going to be unlikely,” he said. “That’s why we recommend surgery at the youngest possible age. The brain is more plastic to be able to make up the differences the younger they are.”

•••

The Poelings both took extended leaves from work to care for Hayden. Kimberly is a special education teacher’s aide in the Marana Unified School District and Keith is a truck driver.

Hayden’s four-and-a-half hour surgery was on Aug. 5, when she was just shy of 16 weeks old. The surgery was risky, but so was doing nothing.

“I feel the chance of her passing away as a result of the surgery was less than passing away as a result of her seizures,” Adelson said. “She could aspirate, get a lung infection, suffer an unexplained death from epilepsy. We felt surgery was a safer option.”

Kimberly and Keith felt the same way.

“She had three hospitalizations before surgery and the first time I saw her hooked up was so traumatic. But I was anxious for her to have no seizures,” Kimberly said.

The most difficult part of the hemispherotomy for Kimberly and Keith was seeing Hayden right after. Her eyes were swollen shut and she had a drain coming out of her head.

•••

In general, the left side of the brain is analytical, the right side creative. But when children have had a hemispherotomy or hemispherectomy, all functions move into the hemisphere that’s working.

“That is the great thing about working with children. They are living miracles,” Adelson said.

When former Congresswoman Gabrielle Giffords was shot Jan. 8, 2011, a bullet went clear through the left side of her brain. As a result of that injury, she lost part of her vision, the right side of her body is partially paralyzed and she has trouble with communication and speech.

Though the entire left side of Hayden’s brain is non-functional, she is already showing more movement on her right side. And her speech may not be affected at all. The difference is the neuroplasticity of a child’s brain.

“This little girl has weakness on the opposite side of her body but because she’s a baby we expect a lot more function than Gabrielle Giffords,” Adelson said. “She’s unlikely to play the piano with that hand but it could still grab things, just not fine movement …She may walk with a little bit of a limp but the leg usually comes back fairly strong.”

Cognitively, Hayden’s future is unclear. Children who have had hemispherotomies often have special needs. But their outcomes vary. Some children have graduated from high school, some graduated college, and they are able to hold down jobs.

Sue Yudovin, a pediatric nurse practitioner at the University of California Los Angeles, has studied the long-term outcomes of children who have had hemispherotomies. She has found that children with Hayden’s condition typically don’t fare as well as children who have the surgery for other reasons. She has also found that children whose left hemispheres were affected have a tougher road than those whose right sides were affected.

“She’ll walk, talk, be potty trained. She’ll have a limp on the right side,” Yudovin said of Hayden. “There is a cognitive hit but it’s hard to tease out exactly what that will be.”

But she said getting Hayden into surgery early means a better chance for a positive developmental outcome. Adelson is optimistic, too.

“If we give intense therapy — speech and occupational — and an enriching environment, these children grow up to be potentially contributing adults,” Adelson said. “Her surgery went well and we are very optimistic for her long-term outcome.”

•••

When Hayden was diagnosed, all Kimberly heard was that the prognosis was poor. She was terrified she’d only have her daughter for a couple of years.

The family is now confident about Hayden’s physical health, and the rest of it is a wait and see.

Some children who have had hemispherotomies need to go back for surgery because not all connections were severed. In those cases, the abnormal part of the brain is removed. Kimberly and Keith hope that’s not the case for Hayden.

They try to enjoy the present. A few days after her surgery, Hayden smiled for the first time. She’s also cooing and babbling and getting stronger with physical therapy.

The family is waiting to hear her laugh.

“I am enjoying my baby now,” Kimberly said.

The Poelings will move in with Kimberly’s family in Phoenix at the end of the month. Their landlord is selling their Picture Rocks rental house and they must be out by Sept. 30. The move may end up being permanent because of the medical options available to them in Arizona’s biggest city.

“Hayden’s doctors are there. There is a larger selection of physical and occupational therapists in Phoenix,” said Kimberly, who has offset some of her travel expenses and lost wages with a Hope for Hayden GoFundMe campaign and T-shirt sales that brought in a combined $1,000. The shirts have a butterfly on the back, one wing larger than the other.

“The mom was heroic here,” Adelson said. “I really give her kudos for, number one, knowing what was wrong with her child; number two, doing the research on her own; and number three, finding a place that can handle these types of children in these kinds of situations.”

Wearing a mortarboard, graduation stole, and surrounded by family, 104-year-old Mary Jo Stinnett earned a continuing education diploma last week.

“This is better than bingo!,” said Stinnett, who turns 105 on Thursday.

Stinnett was one of 24 residents who graduated from the “Villa Maria University” program at the central Tucson Villa Maria Care Center, which includes both nursing home and assisted living facilities. The graduates comprise about one quarter of the center’s overall population.

Rather than credit hours, officials at the center use the attributes of courage, curiosity and communication as measures of success. The program requires attendance and engagement in learning about new subjects like classical music and skills like yoga.

Stinnett, who was born before World War I in 1909, is Villa Maria’s eldest resident. While she has had some physical decline in recent years due to both general aging and a stroke six years ago, mentally she’s lively, lucid and wants to learn.

One of three “centenarians” — people over 100 years of age — at Villa Maria, Stinnett is among a small but significant group of Americans. While they comprise just .02 percent of U.S. residents, centenarians have been increasing in both numbers and proportion.

During the period between 1980 and 2010, the U.S. centenarian population grew by 66 percent — much higher than the overall population growth rate of 36 percent during that time, according to a U.S. Census report. About 53,364 Americans are older than 100, federal data show.

Studies on centenarian population growth have come to differing conclusions. One study out of England says more than one-third of babies born in 2012 in that country will live to celebrate their hundredth birthdays. Other studies say the growth in centenarians is slowing.

Tucson Medical Center has been hosting a party for Pima County centenarians for more than 20 years. While the size of the party in the last few years has remained a constant 40 to 50 centenarians, attendees at more recent parties have been an increasingly vital and engaged group, says L’Don Sawyer, manager for senior services at TMC.

Sawyer, who has attended for the past decade, has noted fewer wheelchairs and higher cognitive function than at past celebrations. Some still live on their own.

“The thing I see the most is resilience. These older adults have been through so many hard times, so many challenges,” Sawyer said. “They are all positive. They’ve experienced deaths of children, of spouses and of other loved ones. But they continue to get up and say, ‘today’s going to be a good day.’”

Stinnett was born in Cuba, grew up in Florida, and remembers meeting Fidel Castro. She likes to tell the story about how their politics clashed.

Until she moved to Villa Maria late last year, Stinnett had been living in Tucson with her daughter, Barbara Kaplan.

Kaplan attributes her mother’s longevity to healthy living — no smoking, not much alcohol, lots of vegetables and lots of walking. She has never driven, so walking has always been her go-to mode of transportation.

And other than a few frozen TV dinners during the 1950s, Stinnett stuck with cooking from scratch, which meant minimal processed food. She’s also got genetics on her side — other family members have lived into their 90s and beyond.

Stinnett’s daughter describes her as determined.

“She sees the glass half empty, but she’s going to fill it. She’s stubborn like that,” Kaplan said.

Patients who arrive at University of Arizona Medical Center with one of the gravest of injuries — a gunshot wound to the brain — are increasingly surviving, a new study finds.

A retrospective five-year study of 132 people who arrived at Southern Arizona’s lone top-level trauma center after taking a bullet to the brain shows a survival rate that began at 10 percent rose to nearly 50 percent in the fifth year.

The study years encompassed 2007 to 2011. Among patients included in the data was former Rep. Gabrielle Giffords,  who was shot through the left hemisphere of her brain in an assassination attempt on Jan. 8, 2011.

Authors of the study, recently published in the Journal of the American College of Surgeons, say survival improved through aggressive management of all 132 patients, regardless of their condition — including those who were comatose on arrival and whose wounds penetrated both hemispheres of the brain.

That kind of intervention, which can include surgery, has been questioned because some of the people who survive do not go on to have meaningful lives, said the study’s senior author, Dr. Peter Rhee,  a professor and chief of the UA Division of Trauma, Critical Care, Burn and Emergency Surgery.

“I used to be very aggressive about withdrawing care on patients in vegetative states but many have woken up, and in the young you really can’t predict it,” Rhee said. “This is a major problem. (But) we have many, many examples of people waking up and countless numbers of patients seeking me out later to thank me .”

“Aggressive management” includes one or more of a list of resuscitation treatments, including blood products, a heavily concentrated salt solution called hypertonic saline, cooling the patient’s body temperature and using different types of drugs, including hormone therapy.

“You don’t know who is going to live and die,” said Rhee, who treated Giffords. “You don’t want me as a physician to be judge and jury. … Any time you touch any part of the brain, technically there is a deficit, obviously. But a lot of those things you can overcome. And Gabby is not the only person who has survived in her same fashion.”

Cooling the body is counterintuitive care for trauma patients, who are normally kept warm to help blood clot. But mild cooling was one of the treatments used on Giffords. The evening of the shooting, after Giffords had part of her skull removed, Rhee used a device on her that cools the skin.

“In January 2011 when Gabby Giffords got shot, a lot of people say she got lucky. I think it’s because of what we had in place at that time,” Rhee said. “I knew this data at that time, but I didn’t say it in the press. I had to bite my tongue.”

Cesar Peña, also included in the study data, wasn’t supposed to make it through the night after he was shot.

On July 14, 2008, when he was 8 years old, he was hit in the forehead with a .22-caliber bullet. The last thing he remembers about that day is swinging on the swing set in his grandmother’s backyard, falling back and hearing his grandmother screaming.

The bullet, which came from a teenage neighbor playing with a rifle, shattered into pieces that scattered in his brain, leaving him unresponsive when he arrived at the hospital. Like Giffords, he had surgery to remove a portion of his skull to allow for swelling.

“I can move my arm a lot more now, and point with two fingers,” Cesar said this week, holding the left arm that lost most of its function as a result of the shooting.

Now in seventh grade, Cesar wears a brace on his left leg and still can’t run or play sports like other kids. He’s a Seattle Seahawks fan and hopes that one day he’ll be able to play football. He does well in school, likes his friends and wants a career in science. But he was comatose for days after the shooting and didn’t speak or walk until after he was discharged to a rehabilitation facility.

The UA Medical Center trauma team typically sees one patient a day who has been wounded by gunfire. Rhee has treated gunshot victims ranging in age from 6 months to 95 years.

But the study was strict in its parameters, and included only people shot in the brain, which worked out to about 26 people a year. If it was a bullet wound to the face or the head but there was no brain penetration, the patient was not in the data set. The mean age of the patients was 32, and a vast majority were male.

Some current neurosurgical literature advocates gauging treatment by the Glasgow Coma Scale (GCS) — a measurement of eye, verbal and motor responses. A 2003 study published in the journal Surgical Neurology International does not recommend surgery for comatose patients who have a low score and no evidence of an intracranial hematoma that might be causing the coma.

Numerous studies have reported survival rates of less than 10 percent for comatose or vegetative patients with low Glasgow scores, ranging between three and five. Comatose means lacking in awareness and wakefulness. It’s different from a vegetative state when a patient may be awake but not aware.

In contrast to other studies, Rhee and his study team saw an average 28 percent survival rate for patients in the study period who came to UAMC with gunshot wounds to the brain and a Glasgow score between three and five. Twenty percent of the survivors, eight people, left the hospital with scores between three and five.

“Discharging patients in a vegetative or comatose state is arguably not beneficial to the patients, their families or the health-care system,” the study says. “Of note is that we do not have long-term functional outcomes and it is difficult to know what the outcome really is.”

Indeed, Rhee emphasizes that people can wake up, even after they’ve been discharged from the hospital in a vegetative state and sent to a nursing home for supportive care.

In the early part of his career, he was aggressive in talking to families about withdrawing care for patients with low Glasgow scores. Rhee had worked for the military on the battlefields of Afghanistan and Iraq before coming to Tucson.

“There are people in dense comas that wake up, and you just don’t know. There are some people that you are pretty sure, but that’s the ethical dilemma that society has to pick,” Rhee said. “How much money are we going to invest in this? These people can bankrupt the family, but they do sometimes wake up.”

He stressed that being in a coma is not the same as being brain-dead.

Brain death means someone is stable physiologically, yet has no brain function and cannot breathe without a ventilator. That’s when organ donation is recommended.

In total, 92 of the patients in the data set died and 40 survived. Most of those who died — 63 people — were suicides.

“A lot of the people here, it’s self-inflicted,” Rhee said. “We get people here all the time who have tried to kill themselves with hanging. We get 85 percent of them back, they are normal. But when you find out your term paper was bad or your girlfriend left you and people go home and put a gun to your head, it’s a quite different effect.”

When people are revived after a suicide attempt, especially a serious one, the chance that they’ll try it again is low, Rhee said.

“The bottom line is that you can save a lot of these people. It has to start with that mind frame.”

When Flor Cristerna started at Amphitheater High School in August, she did it with a new smile.

Her previously crooked teeth are straight as a result of the braces her family never thought they’d be able to afford. They came through a low-cost program called Smiles Ahead, started by a Tucson father and son who are volunteer dentists at the local St. Elizabeth’s Health Center.

Without dental insurance, braces cost $4,000 to $6,000. Even when families do have coverage, the out-of-pocket share of fixing their children’s teeth can be prohibitive.

And for low-income families, Medicaid covers routine dental care but — except in a few severe cases — not braces or other corrective orthodontic devices.

Last year, Arizona's Medicaid program, which is called AHCCCS (the Arizona Healthcare Cost Containment System), spent $133.5 million on dental care for infants and children ages newborn through 17. Less than one half of 1 percent of pediatric dental spending — $369,843 — was on orthodontics.

Crooked teeth, overbites and underbites can affect self-esteem and can hinder speaking and chewing abilities, said Eric Leber who practices with his father, Larry Leber, at Leber Orthodontics.

The Lebers started Smiles Ahead two years ago because they wanted to do something to give back to the community.

The Lebers, along with help from Tucson orthodontist Dr. Michael Don, screened 60 kids last December and narrowed the field to 18. Kids must be between the ages of 10 and 16, have severely misaligned teeth, and must come from a family facing financial hardship. Through the program, families can get braces for their children for about $500 to $1,000.

To apply, each child had to write a brief essay explaining why braces would be important to him or her. Applicants also had to submit teacher reports showing continual improvement in math and English — subjects the Lebers see as keys to future economic success. Kids with good grades qualify for an additional $30-per-month discount on the cost of their braces.

During the summer months when school was out, the Lebers gave the kids an assignment to write about their teeth.

“Without this program my teeth would still be awful and I would probably sadly never get a great smile,” 14-year-old Alejandra Zarazua wrote in her essay. “I am so grateful and super happy that my mom found out about this program and that it not only offered braces but it offered an opening for a fun, new and amazing family!”

Leber said that by using grades as an incentive, the program helps kids ensure a better future for themselves — a bigger guarantee that those smiles will be put to good use.

“Some of the kids have been bullied,” Leber said. “This builds confidence.”

Flor Cristerna says her payoff has been big — she no longer covers her mouth when she smiles.

She’s considering a career in dentistry so she can help change people’s lives.

At 3:45 a.m. seven days per week, rain or shine, Dr. Luis León’s alarm clock goes off and he heads out for a 2½-hour run.

Running 15 miles per day is routine for the 45-year-old Tucson vascular surgeon. It’s a long way, but necessary for the ultramarathon races he regularly completes.

On Sept. 5, León will tackle his longest-ever race — a 200 miler starting on the west shore of Lake Tahoe in California. The distance works out to nearly eight marathons.

León, who works for Pima Heart and practices extensively out of Tucson Medical Center’s interventional vascular operating rooms, will be using the race as an opportunity to raise awareness of peripheral artery disease (PAD). PAD is a buildup of plaque in the arteries that supply blood to the legs, arms, brain, kidneys, and other organs.

All the money León raises will go to the Louisiana-based My Leg My Choice Foundation, a nonprofit organization that works at preventing amputations due to PAD. León was recently named chair of the foundation. His fundraising page is online at fundly.com/my-leg-my-choice

PAD can manifest in several ways, including a stroke or gangrene of the leg, depending on the location of the affected artery. Symptoms include wounds or sores that won’t heal, darkening skin, muscle pain, and numbness in feet or legs.

“The medical term is atherosclerosis. It means plaque buildup inside the arteries,” said León, who is a native of Peru. “Aging will make your arteries get hard and so will things that you do to yourself like smoking, which is in my opinion number one of the bad things you can do to yourself.”

Forty to 50 years ago, the only therapy for gangrene of the lower extremities was amputation, and that is still the case in many parts of the world.

León wants to get the word out that losing a limb due to blocked arteries is no longer inevitable. Vascular surgeons are now doing less amputating and more fixing — removing the plaque buildup with minimally invasive surgeries, he said.

León’s aim in the 200-mile race is to do the race faster than the “cutoff” time of 100 hours, which works out to four days and four hours. But beyond that, he has set no time goals. His last race was a 100-miler in Utah, which he completed in 24 hours, 25 minutes.

“Two hundred miles is very different, I don’t know what my strategy will be,” he said.

“At some point I have to sleep but I am just afraid of sleeping and then waking up very stiff the next day for another 50 or 60 miles.”

Two weeks after the Tahoe race, León plans on doing a 170-mile event at the Grand Canyon called the Grand to Grand Ultra. That race has a seven-day time limit and is run in stages that range from approximately 8 to 52 miles. In between the staging areas, there will be no aid stations, so León will need to carry his own food and water in a backpack while he runs.

When he’s not racing, León follows a vegan diet, which means no meat, eggs, dairy products or fish. He eats a lot of quinoa, lentils, and soy burgers, he said. During races he primarily relies on vegan protein powder, which he mixes with water, to meet his nutritional needs.

León believes the health effects of endurance running are positive and questions studies that have suggested long endurance exercise events may have an adverse effect on the heart. He noted that various studies have come to different conclusions.

Indeed, a study released this year by researchers at the University of California Davis and Stanford University suggests better health outcomes for ultrarunners. The study found that, compared with the general population, ultramarathon runners have a low prevalence of serious medical issues including cancers, coronary artery disease, seizure disorders and diabetes. Researchers also found ultramarathon runners reported fewer missed work or school days due to illness or injury.

His co-workers say León’s charisma and passion for both medicine and running make him an inspiring role model.

“He is well-known in the hospital physician and staff community. He runs with a lot of our staff and motivates them,” Tucson Medical Center spokeswoman Julia Strange said.

“He is an elite runner. But he does not act elite. He focuses on encouraging people of all levels.”

Running every day is difficult given León’s schedule as a surgeon, and sometimes he has to swap morning runs for afternoon. But he makes the time because he’s passionate about both running and helping to prevent and minimize vascular disease.

León says he prefers ultramarathons over the regular distance because of the mental endurance that’s required.

“As you age you lose speed but you gain resilience; mentally you are much stronger,” León said. “The more you get into it the more you realize how amazing the human body is, and how far it can take you. As long as you have the mental tenacity to do that.”