PORTLAND – Five months ago, Alannah Shevenell of Hollis was struggling with a daunting regimen of medications, blood tests and hospital checkups, and fending off regular nausea, fatigue and frustration.
The 9-year-old girl had recently returned home after a groundbreaking multi-organ transplant at Children’s Hospital Boston.
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On Tuesday afternoon, Alannah showed no signs of illness as she and six of her new friends took turns riding through the Old Port in a pint-sized electric Polaris Gem. It was the highlight of a complimentary tea party at the Portland Regency Hotel, where the girls wore frilly dresses, flowered hats and sparkling sandals.
“The ride was the best,” Alannah said, excited after her brief trip around the block. “We pretty much said hello to everyone and screamed and waved.”
Alannah returned home on Feb. 1 from the Boston hospital, where she underwent 14 hours of surgery on Oct. 29. Her doctors removed a rare and relentless tumor that had wrapped around her organs and, in one tangled mass, from a single donor, they replaced her stomach, pancreas, spleen, liver and small intestine, and one-third of her esophagus.
Hospital officials said Alannah’s surgery was the first known esophageal transplant and the largest number of organs transplanted into a person at one time in New England.
Her recovery has been remarkable in recent months, said Debi Skolas, her grandmother. Alannah has greatly reduced her medications, taking a few anti-rejection drugs each morning and night. Blood tests are now only once a month, hospital checkups come every two or three months, and she’s eating regularly, enjoying all types of foods.
The results have been so good, Skolas said, that Alannah’s doctors are considering removing her ostomy bag in November, about a year earlier than expected, and connecting her transplanted small intestine to her own large intestine so she will be able to go to the bathroom normally.
Alannah, who’s now 10, returned to Hollis Elementary School part time in April, attending classes regularly for the first time in her life. She hopes to attend fourth grade full time in the fall.
No longer isolated by her illness, she has made several friends her own age and regularly enjoys sleepovers, play dates and swimming for hours in the backyard pool, supervised by her grandfather, Jamie Skolas.
“He says I’m turning into a fish,” Alannah said.
Tuesday’s party, complete with cupcakes, herbal tea and mini-spa treatments, was a far cry from the more sedate Make-a-Wish tea party that the Regency hosted for Alannah two years ago, when she was facing death and waiting for a donor.
Back then, her only party guests were her grandmother, a visiting nurse, one of her grandmother’s friends and her tutor, Nicole Poole.
Earlier this year, Alannah called Poole, then 28, her best friend.
“I’ve been replaced, which is amazing,” Poole said Tuesday, watching the girls enjoy the party.
Denise Ross, the Regency’s banquet manager, organized the Make-a-Wish tea party two years ago and invited Alannah back for an after-surgery celebration with her friends.
“She looks fantastic,” Ross said. “I can’t believe it.”
Debi Skolas, 57, is having fun trying to keep up with her now-healthy granddaughter and speaking regularly about the need for organ donation.
Skolas said she’s upset by some online comments that have been posted on news stories about Alannah, especially when people criticize the Skolases for being happy when organs became available or suggest that several children’s lives could have been saved by the organs Alannah received.
Alannah was the only child of her size and tissue type on the regional donor list when her organs became available, Skolas said. There’s no listing for stomach transplants, the spleen and the esophagus aren’t usually transplanted, and most intestinal transplants include the liver, she said.
“It’s true, we celebrated while another family cried,” Skolas said. “It’s the nature of the beast. We waited 15 months. We were living with a dying child. We are grateful for the gift that the donor family gave us.”
Skolas said she has chafed when some commenters have called Alannah a guinea pig and said she will have no quality of life.
“Does she look like a guinea pig? Does she look like she has no quality of life?” Skolas asked, watching Alannah enjoy her tea party Tuesday. “I just want people to realize what organ donation can do.”
Staff Writer Kelley Bouchard can be contacted at 791-6328 or at:
kbouchard@pressherald.com
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