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Tuesday, May 4, 2010

DONATE LIFE ORGAN DONATION AWARENESS-MODESTO,CA-COURAGE OF A CHAMPION


Source: The Modesto Bee
By Sam McManis
smcmanis@sacbee.com


Heading to the foothills in the pre-dawn chill, Connor Ellison slouches in the back of the family's packed Toyota Sequoia. Once they reach Plymouth, dread and inertia keep him lingering there.

Ahead is a 65-mile bike ride on some of the area's most beautifully brutal country roads, with names as ominous as Slug Gulch, Volcano and Ram's Horn. All told, it's a 5,000-foot elevation gain, 11 miles of quad-straining uphill work.

Snow coats the roadside on this mid-February day as other cyclists on Team Donate Life, training for the 3,000-mile Race Across America in June, unload bikes, add layers and gird for the day's ride. Connor, meanwhile, futzes around with gloves and gear, delaying the inevitable. He knows what to expect. Pain.


Connor and pain are longtime companions. He has a rare liver disease, congenital hepatic fibrosis, that almost killed him one night a few years ago and has put him too often in the hospital.

But that condition is what brought him to the foothills on a day better spent indoors. Feeling better after surgery in December to relieve pressure on veins around his liver, Connor's bike training is going well, but his motivation this day is shaky.

He is 12. Remember 12? You're full of plans and dreams, but not always so eager to endure the drudgery to realize them. And this is, after all, the first day of a weeklong school break in Connor's hometown of Folsom. He could be sleeping in, then playing video games with his best friend, Elliott.

"Come on," his mother, Tiffany, gently prods. "The team is waiting."

Connor finally rouses himself and mounts his shiny new road bike. Liver disease or no, he is something of a cycling prodigy. Though just 5-foot-1½ and 95 pounds, with legs as thin as chopsticks, the kid is a climber. Hard-core cyclists call it having a "big engine," and Connor's has enough horsepower to hang with his dad, Jared, and others on the team who are veteran long-distance riders.

The ride's first hour and a half does not go well. Connor lags back with his mom, a nascent cyclist training hard for the race. Tears mix with sweat on the boy's face. Tiffany starts to lose patience; this whole Race Across America thing "is his dream and he begged us to let him do it," she'll recall later. She pulls up next to him and looks at Connor, who has shed his usually placid demeanor.

"I'm just tired of hurting," he says.

At this point, Tiffany almost loses it. Here's her tough little guy, the third of her four kids, who has experienced a world of hurt since being diagnosed with liver fibrosis four years ago. Now he's being subjected to more pain on this hellacious ride.

Turns out, Connor's heart-rate monitor is causing the pain. It has slipped down his slim rib cage and is rubbing against the zipperlike scar from his surgery six weeks earlier.

Now it's Tiffany who's crying, out of maternal pride and empathy. She gives Connor a pep talk as they make the steady climb.

"I promised that all of his personal sacrifice will be worth it, and that in order for us to reach things in life that most people only dream of, we have to do things … that most people are too afraid of (doing)."

Connor finishes the ride looking strong, smiling broadly. Other challenges will come in subsequent months — another trip to the emergency room for stomach distress, a broken wrist from a fall off his mountain bike and, worst for a sixth-grader shy around grown-ups, public appearances.

But isn't that what life is, a series of challenges? It just seems that Connor has had to learn that lesson earlier than most kids.


Eight months of tests

He didn't always have to struggle. Connor was once your happy-go-lucky suburban kid who was crazy about football and couldn't wait to turn 8 so his parents would let him play.

On the same day as tryouts for the youth league in Folsom, Tiffany took Connor to the doctor for a league-mandated physical. It turned out to be anything but routine. The pediatrician poked around Connor's abdomen and seemed to spend a lot of time in the spleen and liver regions. The doctor said she was concerned that the spleen was enlarged and that his liver didn't feel right, either. The look on the doctor's face gave warning.

"My intuition was, 'This is bad,' " Tiffany said.

Connor spent the next few months undergoing X-rays, ultrasounds, magnetic resonance imaging and biopsies, having endoscopes plunged down his esophagus. And blood tests. Lots of those.

Through it all, Tiffany said, Connor was "very chill about it." Eight months of not knowing what was wrong, and feeling symptom-free, took a toll more on the parents than the child.

"I didn't know too much about it," Connor said. "All I knew was that it was something with my liver, which I didn't (understand) because it was my spleen that was enlarged. Since I've gotten older, I now know what everything means."

One afternoon at UC San Francisco Medical Center, the family finally got a solid diagnosis: congenital hepatic fibrosis, or scarring of liver tissue that can distort blood flow through the liver.

"They couldn't give me any way to fix my kid," Tiffany recalled. "They were telling me, basically, that my kid is a ticking time bomb. They said all of a sudden he could start coughing up blood and, if you don't hurry to the emergency room, he could die."

Tiffany, the worrying type, got depressed. Jared, a management consultant, stayed positive. Still, Connor's dad said, "The doctors couldn't give us any information other than Connor could be fine for 20 years or something could happen tomorrow."

That "something" happened in March 2009 — a little less than three years after the diagnosis. One night, older brother Austin, 18, ran downstairs to say Connor had passed out and was bleeding from the mouth. A vein had ruptured in Connor's abdomen. He was losing blood and consciousness fast. Emergency surgery was needed on the overstressed vein. One minute, Tiffany and Jared recalled, Connor had lost all color from his face and lips. The next, he seemed lifeless.

"Watching somebody hook a blood transfusion up to your kid who's essentially lifeless and then watching him … come back to life, I just can't describe it," Tiffany said. "You have so much gratitude for people who donate blood."

In the past year, Connor has had two more internal bleeding episodes, neither as severe but both requiring hospitalization. The worry with Connor and all hepatic fibrosis patients is complete liver failure, which would require a transplant.

After the initial diagnosis, Connor has been treated by Dr. Carlos Esquivel, director of the liver transplant and intestinal program at Lucile Packard Children's Hospital at Stanford. Esquivel recommended an operation to reroute veins and take pressure off Connor's liver. One risk of the surgery is hepatic encephalopathy, an accumulation of toxins the liver normally removes. But Connor recovered well, Esquivel said.

Esquivel took a special interest in Connor because he is a cyclist, as is Connor's intestinal specialist, Dr. Lorenzo Rossaro at UC Davis Medical Center. When the doctors found out that Jared had completed the Race Across America the previous summer and that Connor had a dream of joining his dad this year on Team Donate Life, they signed on as well.

Rossaro, who has completed the race three times, will serve on the team's "crew" and, no doubt, oversee Connor's health. Esquivel will be one of the team's eight riders.

Overcoming tough moments

The Race Across America relay — there also is a solo ride — is taxing even for veteran riders. Jared gently suggested to his son that he might wait a year before making the attempt. Connor would have none of it. He saved his money, put a fancy road bike on layaway and started training with his mom and dad.

The team wouldn't accept Connor as a member unless he proved himself at the team's October training camp in Park City, Utah. He needed to prove he could ride stages lasting several hours without flagging.

In only a few weeks, Connor progressed to riding 150 miles a week. One night last fall, Jared had scheduled a challenging test ride before the family left for Park City.

"There was a big storm and the winds were huge," Jared said. "We went to the steepest hill in El Dorado Hills. Connor's like, 'I don't want to go.' I'm like, 'These are the tough moments. We've got to suck it up and do these things.'

"(Tiffany) and I know we need to keep balance in his life. He's 12, and 12-year-olds don't always want to train. But Connor's fought through those days."

Both doctors say they wouldn't permit Connor to participate if the race posed a danger.

"His liver's working well, so that shouldn't be an issue," Esquivel said.

Connor said he appreciates the votes of confidence. He often thinks back to that chilly, hilly February ride in the Sierra foothills and how he overcame the hurt and pain.

"I know that it'll be even harder in the race. But I know I can do this.


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