February 7, 2012

Alannah’s back home

The 9-year-old multi-organ transplant recipient is 'in her territory,' welcomed by fire trucks, friends and family pets.

By Kelley Bouchard kbouchard@pressherald.com
Staff Writer

HOLLIS — Alannah Shevenell returned home Wednesday afternoon, welcomed by a procession of fire and rescue trucks and a menagerie of family pets, three months after receiving six new organs in a groundbreaking operation.

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Alannah Shevenell and Nicole Poole, her tutor, unpack after arriving home.

Photos by Gregory Rec/Staff Photographer

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Alannah Shevenell, 9, jokes with her tutor Nicole Poole on Wednesday, shortly after arriving home in Hollis from Children’s Hospital in Boston. Alannah, who has never been to school, describes Poole as her best friend. Poole has organized some fundraisers to help the family.

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HOW TO HELP

If you would like to help the Skolases, checks made out to The Skolas Family may be sent to Angels for Alannah, 739 Narragansett Trail, Buxton 04093.

Please note that the fundraiser has been organized by friends of the Skolases and isn’t approved by the Internal Revenue Service.

The feisty 9-year-old underwent 14 hours of surgery on Oct. 29 at Children’s Hospital Boston to replace her stomach, pancreas, spleen, liver, small bowel and one-third of her esophagus. A rare and unyielding tumor was strangling the organs and threatening Alannah’s life.

Hospital officials say it was the first known esophageal transplant in the world and the largest number of organs transplanted into a person at one time in New England.

Little of that fazed Alannah as she kicked off her slippers and padded around her grandparents’ immaculate 1820 Federal-style house in her bare feet. After healing and fighting off infections for three months, she had cheeks as rosy as her red dress and polka dot leggings.

“We always thought she’d do 100 percent better if she was home,” said her grandmother Debi Skolas. “You can tell, she’s a totally different person when she’s home. This is her territory.”

Her grandfather Jamie Skolas lugged in several suitcases and dozens of boxes and bags of medications, toys and other items that accumulated in Alannah’s hospital room over the last three months.

“This place hasn’t been the same without her,” Jamie Skolas said, shortly after making plans to take Alannah sledding today on a big hill in their backyard.

After greeting the family dogs, Ozzie and Gert, Alannah checked out her “office,” where she does crafts and makes scrapbooks, then scouted around for the three cats. She found Charlotte and Roger, but figured Helen was out hunting mice. When Charlotte tried to sneak outside, Alannah scolded her.

“Don’t give me that look,” she said. “I know that look.”

Alannah, who lives with her grandparents, was diagnosed four years ago with a massive inflammatory myofibroblastic tumor. The tumor didn’t respond to traditional chemotherapy and grew back aggressively after several surgeries. Ultimately, it surrounded her aorta, renal artery and esophagus, and greatly distended her abdomen.

Once her doctors decided that the only option was to remove the tumor and affected organs, the Skolases waited 15 months for a donor of similar age and size. The organs were transplanted together in a tangled mass.

Alannah’s tummy is flat now, with a horizontal scar that smiles from one side of her abdomen to the other. She has begun eating small meals, but cannot go shopping or to church because anti-rejection drugs have compromised her immune system. In several months, if her health remains strong, she may resume more public activities.

When the family got home Wednesday, her grandmother immediately started organizing and memorizing a long list of medications and procedures that she will administer to Alannah each day, including measuring her body waste. She’ll also bring Alannah to regular follow-up visits with her doctors in Boston. The first one is scheduled Monday.

“We call her Super Grammy,” said Nicole Poole, Alannah’s tutor, who welcomed the family home. “They ought to give her an honorary nursing degree after all of this.”

Alannah, who has never attended school, describes Poole, who’s 28, as her best friend. In addition to tutoring Alannah about 15 hours a week, Poole has organized a few fundraisers to help the Skolases cover living expenses.

The Skolases have a handcrafted-furniture business, Primitives in Pine, but their income has dropped dramatically since Debi Skolas gave up designing and building furniture to care for Alannah. Though MaineCare covers Alannah’s medical bills, the Skolases have dipped into their retirement savings to make ends meet.

“Her whole life is Alannah,” said Poole. “She makes sure Alannah is getting everything she needs.”

Skolas deflects any praise, which peaked on Sunday when she was recognized as a TD Bank Home Court Hero at a Maine Red Claws game.

The Skolases said they are grateful to the surgical team, led by Dr. Hueng Bae Kim, and the family of the donor who provided the transplanted organs. The donor lived somewhere in the Northeast, Debi Skolas said.

“Somebody lost a child and they made a really courageous decision,” she said. “There are a lot of pieces of that child alive in Alannah. If every American was a donor, no one would wait for organs.”

Staff Writer Kelley Bouchard can be contacted at 791-6328 or at:

kbouchard@pressherald.com

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