More surgery for 11-month-old Addie

09:19 AM EST on Monday, February 23, 2004

BY STEVE PEOPLES
Journal Staff Writer

 

PROVIDENCE -- Stacey Vogl is not worried. But she knows she should be.

She calmly signs thank-you cards on a small table in the center of the room. She is surrounded by family. But her eyes are fixed on the task at hand.

She writes a special thank-you. Stuffs the envelope. Licks the envelope. And moves on to the next card.

"Usually I'm falling apart, but I'm getting used to it," she says without looking up. "It's nice to have something to do."

There are two boxes of envelopes on the table in front of her. They will all be filled soon.

Stacey, the mother of 11-month-old Addison Vogl, flips through the notebook that lists the donors' mailing addresses. They fill 14 pages.

Just in front of her, husband Mike Vogl is trying to read a book for a business class. He too, seems calm.

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Journal photo / Sandor Bodo

PREPARING FOR SURGERY: Pediatric surgeon Dr. Thomas Tracy, center, prepares Addison Vogl for the surgery at Hasbro's Children's Hospital that was needed to repair her liver and fix a problem with her stomach.

"I don't expect them to come in here and say she didn't make it," he says. "She's proven herself. After all she's been through? We expect the best now."

The post-op waiting room on the second floor of Hasbro Children's Hospital is a hopeful place now.

But down the hall and through two sets of doors, Addie Vogl is fighting for her life.

Ten days short of her first birthday, Addie is undergoing her fourth major surgery. A team of four surgeons works to repair what remains of her liver and reposition her stomach in the hopes Addie will be able to keep food down.

She has never eaten solid food.

ADDIE WAS BORN three months premature, weighing 1 pound 7 ounces.

Her eyes were sealed shut and some of her fingers hadn't fully developed.

After 89 days in the intensive care unit, Addie was brought to the Vogls' Portsmouth home for the first time. Though she was small for her age, her health appeared fine at first.

Mike and Stacey worried something was wrong when Addie's appetite faded. They noticed her belly button was being pushed partially inside out and they suspected a hernia.

On Sept. 22, 2003, doctors informed the family that Addie was suffering from a rare form of liver cancer known as hepatoblastoma. She would need to start chemotherapy immediately to stop the spread of the deadly cancer.

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Journal photo / Sandor Bodo

THANK YOU: In a hospital waiting room, Stacey Vogl writes thank-you notes to the people who have donated money to help her family. In the background are grandparents Karen Vogl, of Los Angeles, and Bill Kelly, of Newport.

Out of the hospital for two months, Addie would spend the majority of the next five months sleeping on miniature hospital beds. Her mother and father would be at her side most nights, sleeping on the large fold-out chairs in Hasbro's oncology ward.

Mike Vogl had recently started an MBA program, having been laid off from his job as an airline pilot shortly after Sept. 11, 2001. Stacey left her job as a nutritionist to be with her daughter full-time.

Addie didn't sleep much. She was fed with a tube inserted into her stomach through her nose. She vomited about 12 times a day.

The family worried they wouldn't be able to pay their bills. They had expensive monthly insurance payments and living costs.

When news of their story first became public toward the end of last year, people immediately started donating money.

The Polar Bears Club of Newport donated proceeds from its New Year's Day swim to Addie. There were benefit dinners. Radio auctions. Cans at local stores. Stacey's coworkers donated 81 of their vacation days. Mike's new boss donated use of his plane. Children sent their allowance money.

"IT'S A VERY serious surgery," says pediatric surgeon Thomas Tracy, standing over the operating table as the surgical team begins to open Addie's abdomen. "It's potentially life-threatening."

Most of Addie's body is covered with a blue blanket so that only her midsection -- roughly the size of Tracy's fist -- is exposed.

Four surgeons, an anesthesiologist, and three nurses surround the baby. All are covered with sterilized gear from head to toe -- even their shoes are covered.

Three computer screens display her vital signs. One machine emits a steady high-pitched beeping sound.

Tracy says that Addie's overall chances of survival are good. Without turning his surgeon's glasses from the small abdomen on the operating table, he says Hasbro has developed an increased liver focus in recent years.

The doctors locate Addie's liver immediately. Despite the leak, they say it looks good. In removing the cancer last month, doctors at Baltimore's Johns Hopkins Hospital were able to avoid a complete transplant, but removed 70 percent of Addie's liver.

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Journal photo / Bob Thayer

Stacey Vogl with her daughter in December.

Tracy said the organ is already showing signs of regeneration.

Addie's stomach, however, has problems.

"The stomach has slid up to where the liver used to live and has fused in the totally wrong position," Tracy says, using a clean cloth to wipe up some of the excess blood.

The doctors' voices become tense as the surgery continues.

"No matter what we're saying, things are going relatively well," Tracy says.

KAREN VOGL'S eyes well up with tears when she talks about her granddaughter's eyelashes.

"You didn't see her little eyelashes and eyebrows?" she asks excitedly from her seat in the corner of the hospital waiting room. "Now, she's just going to start chemo again and they'll all fall out, but they're there."

Karen has stayed at the Vogls' Portsmouth home since shortly after Addie's diagnosis in September. She left her life in Los Angeles to help care for the Vogls' 12-year-old son, Taylor, a seventh grader at Portsmouth Middle School.

Karen is sweet and supportive, but frustrated.

"I just want to hold her without worrying about all the tubes or wires. I've never been able to do that," she says.

Taylor is on the couch beside her, playing the latest "Lord of the Rings" game on his Gameboy. Right now he is bored, having been at the hospital for a few hours already on this Friday morning.

"I just go along with what happens," he says with a nervous smile.

He plans to go to a hockey game with Mike over the weekend, a rare father-son moment for the Vogl men.

"It feels different not having [my parents] at home, but they visit," he says.

The family has gotten used to the uncertainty of dealing with Addie's condition, said Stacey's father, Bill Kelly, of Newport.

"For them, today is just one more day," he said, referring to the family surrounding him in the waiting room. "Addie's going through the hard part. Any one of us would be on that table for her, but it does become just one more day."

ADDIE IS transferred into the intensive care unit at about 2:30 p.m. She is in good shape, but a ventilator will help her breathe for the next few days.

Tracy's team repaired the leak in her liver. They repositioned her stomach. They repaired part of her esophagus. And as a precaution, they performed another biopsy on a spot on her liver, though recent tests reveal that the existence of cancer cells is unlikely.

Doctors say it will take Addie several days to recover from the surgery. Assuming there are no complications, she will begin her next round of chemotherapy immediately. There will be at least two three-week rounds of chemotherapy to ensure the cancer doesn't return.

At one time, the family thought Addie would be able to spend her first birthday, March 1, at home, but those thoughts are gone now.

Mike and Stacey plan to spend another night in the hospital. Taylor will go home with Karen. It is the life they are accustomed to now.

Mike talks about the job he recently started at a mortgage company.

"I go to work and I live in a hospital," he says.

The entire family loves the people at Hasbro. They're grateful for all the donations. But they're ready for a change.

"We know it's out of our control. She's in good hands," Mike says. "But hopefully this is the last major surgery."

To contact Steve Peoples phone 277-7459 or e-mail SPeoples [at] projo.com More pictures ... click here.