Monday, Nov 19 2012 09:30 PM

Bakersfield boy thriving after amputation

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    By Michael Fagans / The Californian

    Ethan Perez, 9, and his brother Cole, 12, talk with their parents and pet the family dog at their home on Monday night in Bakersfield.

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    By Michael Fagans / The Californian

    Ethan Perez, 9, was in good spirits at his family's home in Bakersfield in November following the surgery at UCLA to amputate his left leg.

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    By Michael Fagans / The Californian

    Ethan Perez, 9, and his mother Debbie Landry share a smile while talking about Ethan's recovery from surgery to amputate his left leg at the family's home in Bakersfield on Monday night.

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    By Michael Fagans / The Californian

    Ethan Perez, 9, and his mother Debbie Landry share a smile while talking about Ethan's recovery from surgery to amputate his left leg at the family's home in Bakersfield on Monday night.

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BY RACHEL COOK Californian staff writer

Three weeks after doctors removed Ethan Perez's left leg above his knee, the 9-year-old boy is back in action.

"Yesterday, I was playing on the roof of a car," he declared Monday night.

His mother, Debbie Landry, stopped Ethan from completely scaling his father's Toyota Camry. Sitting in the safety of his living room Monday night, Ethan gleefully recounted how he tried to scramble to the roof while he was outside as his brother and friends played.

"When I was on the glass making my way to the top, my mom finally caught me," he said.

Ethan's made forays to his school, the Subway sandwich shop and the dog park in a wheelchair since his surgery. On his first outing, Landry offered to cover him with a blanket to hide his missing limb, but Ethan reminded her that he's already accustom to gawking.

Before the surgery, Ethan's left leg was folded up stiffly and his left foot swollen because of arteriovenous malformation (AVM). Dr. Noah Federman, assistant professor of pediatric hematology-oncology and director of the Pediatric Bone and Soft Tissue Sarcoma Program at UCLA, said the problem is "relatively uncommon."

"(AVM) is disordered development of the arteries and veins and smaller vessels so that they're not really providing regular blood flow to the tissues," said Federman, who has treated Ethan.

Ethan had AVM problems on his knee and foot, which caused him a lot of pain and prevented him from extending his leg. At school he rode a tricycle to get around and hopped from place to place.

Federman said the recommendation to amputate Ethan's leg wasn't a "one-physician decision." A team of specialized health care professionals at UCLA arrived at the conclusion after considering the alternatives, including the embolizations -- procedures that blocked some of Ethan's veins and arteries with glue -- that had been used to treat the condition for several years.

"There were few other options that would improve his long-term quality of life," Federman said several weeks before the surgery.

In the face of grim news, Ethan rose to the occasion, Federman said. Few things can be more difficult for a parent than making a decision like this, but the physician said he thinks Ethan helped his parents by being involved.

"He's a very intelligent boy to begin with, but I think the process of going through this over the last four or five years, he has matured in a way that other kids don't have to," Federman said.

Ethan was in surgery for 10 hours at the Mattel Childern's Hospital UCLA on Oct. 29 for another embolization and the amputation of his leg. His malformation extended up his outer thigh, and the doctors removed it, leaving him with a long row of stitches.

Cole Perez, 12, said waiting for his little brother to come out of surgery was boring and worrisome all at once. Boring isn't how Landry would describe it.

"It was a very long day, the longest day of my life," Landry said.

Ethan said he didn't have time to be shocked by his absent limb after the surgery because he woke up in pain. He stayed in the hospital six nights but started to feel better when he returned home.

When the bandages came off, Ethan was surprised how much of his leg was gone. He returned to UCLA for a follow-up appointment last week, and his family said the doctor told them Ethan is healing well. He will visit the doctor again next week and perhaps lose some, or all, of those stitches.

"For me, this is the hard part the recovery 'cause you get to see him in pain," said Tony Perez, Ethan's father.

Ethan hasn't needed heavy pain medicine lately, just medication for phantom pains and Motrin. The pain worsens at night, Landry said. On Monday night, he got around the house just fine with a walker.

A lot of physical therapy lies ahead for Ethan, but Federman said the boy will benefit from prosthetic improvements made in the wake of the Iraq and Afghanistan wars. Ethan hopes to return to fourth grade at Endeavour Elementary School on Jan. 7 and if all goes well, that could happen, Landry said.

As they start the road to recovery, the Perez family said they've received overwhelming support from the community. About a month before Ethan's surgery, the Perez's home was burglarized and Ethan's surgery gift, a scooter, was stolen. But the pilfered present and the family's other snatched belongings were quickly replaced by people from Bakersfield and beyond.

The list of those who helped out is lengthy, the family said. One church is paying for much of the family's hotel stay, and another gave Ethan a prayer quilt. Cole and Ethan got to ride in a fire engine, and Ethan was given a fireman's helmet, a nod to his fire chief post on student council. Schoolmates wrote mountains of letters, Tony said.

"I don't know how people do it if you don't have the luck and the support (we did)," Landry said.

Despite his chipper mood Monday, Ethan admitted he wasn't quite ready to talk about his recovery until a few days ago, but Tony encouraged him to do it.

"A lot of people are concerned about him, and it was just out of respect to just say how he's doing," Tony said.

Ethan is on his way back to normal; his parents said he's 90 to 95 percent there. But Ethan disagreed, declare that personality wise, he's 100 percent back.

"I'm still single," he quipped.

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