BOSTON — Alannah Shevenell is expected to return to her home in Hollis today, after surviving a groundbreaking six-organ transplant at Children’s Hospital Boston that eradicated the rare and relentless tumor that plagued her for nearly half of her life.
Three months ago, the feisty 9-year-old underwent 14½ hours of surgery to replace her stomach, pancreas, spleen, liver, small bowel and esophagus.
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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.
Alannah’s will, her grandparents’ determination and the surgical team’s expertise triumphed over a tumor that had encased several major organs and was closing in on her heart.
“That tumor was like a monster,” said Debi Skolas, Alannah’s grandmother. “It was sticky. It was slimy. It was like an octopus, reaching out and consuming her organs.”
Alannah, who lives with her grandparents, Debi and Jamie Skolas, was diagnosed four years ago with a massive inflammatory myofibroblastic tumor.
The tumor wasn’t considered malignant because it didn’t spread to other areas of her body. But it didn’t respond to traditional chemotherapy, and it grew back aggressively after several surgeries, ultimately surrounding her aorta, renal artery and esophagus.
In the summer of 2010, Alannah’s doctors at Children’s Hospital decided that the only option to save her life was a multi-organ transplant. They expected to wait three to 12 months for a single donor of the appropriate age and size. They wound up waiting 15 months, while Alannah took an experimental drug that kept the tumor at bay.
‘A 50-50 CHANCE’
The surgical team, led by Dr. Hueng Bae Kim, was confident but cautious, said Debi Skolas.
“We knew going into it there was a 50-50 chance she wouldn’t survive the surgery,” she said. “But that was better odds than we were walking in with.”
The surgery on Oct. 29 went better than expected, Kim said. The surgical team removed all of the organs and blood vessels that were encased by the tumor and saved Alannah’s kidneys.
“We were able to peel the tumor off the blood vessels to both kidneys, which required reconstructing some of those blood vessels,” Kim said. “This allowed us to save her kidneys, (so) the donor kidneys were then able to be used by another center to transplant into another patient.”
The donor organs were transplanted “in block,” rather than one at a time, replacing the bottom third of Alannah’s esophagus to her small bowel.
In the months since the surgery, Alannah has battled a serious infection and a leaking lymphatic system, said Skolas, who has spent every day and night at the hospital, sleeping in a lounge chair beside Alannah’s bed.
Their best hope was that Alannah would go home by late February or early March. But her health started to improve markedly two weeks ago. On Friday, they got the green light to go home today.
Skolas said she is grateful for and overwhelmed by the medical staff’s skill and support. “I love them,” she said. “I don’t think there’s another place in the world that could have pulled this off.”
A FEISTY ATTITUDE
Through it all, Alannah’s sometimes sarcastic nature helped the little girl cope with challenges that few adults could take in stride. At one point, her grandmother made her write “I will not be rude to the nurses” 50 times.
“Alannah is a little feisty – that does work in her favor,” said Courtney Fratto, a nurse practitioner who has cared for Alannah from the start of her illness.
Skolas said she has always explained everything to Alannah, believing that letting her know what was going to happen to her was the best way to temper her fears. Now, Alannah knows more than many adults about the human body and what can happen to it.
“I don’t like surprises,” Alannah said Tuesday, shortly before turning down a limousine ride home in favor of riding in her grandfather’s truck.
The Skolases operate Primitives in Pine, a handcrafted-furniture business in Hollis. Debi Skolas, 57, hasn’t worked regularly since Alannah got sick, so the Skolases have been dipping into their retirement savings to make ends meet. Alannah’s medical bills have been covered by MaineCare, the state’s Medicaid program.
“You just do what you have to do and hope you can dig your way out some day,” Debi Skolas said.
‘LIVES ON HOLD’
The Skolases’ dedication to their granddaughter has impressed family members and friends across southern Maine and beyond. Some started an Internet prayer chain that spread across the globe.
Others, including Alannah’s tutors, Nicole and Jeffrey Poole of Buxton, have organized fundraisers to help the Skolases cover expenses.
Penny Bryant, who sells the Skolases’ furniture at her gift shop in Mechanic Falls, is a supporter who attended a fundraiser last month at Gilbert’s Chowder House in Windham.
“I have a beautiful little granddaughter myself, and I can’t imagine what Debi and Jamie are going through,” Bryant said. “They’re both remarkable people. They have put their lives on hold to get Alannah the care she needs. Debi has been by Alannah’s side day and night for three months.”
Bryant described Alannah as a “beautiful, smart and mature” girl.
“She’s been through a lot in the last four years,” Bryant said. “Her little body has taken a beating, but she has an amazing will to live.”
LIFETIME OF CAUTION
Alannah’s doctors say she is recovering well, but her long-term prognosis is unknown because there have been few multi-organ transplants. Her tumor is gone and she has “clear margins,” so it’s not expected to return, but she’ll need regular CT scans to make sure.
She also may need more surgery, including an operation to reconnect her new small bowel to her colon. She now has a feeding tube in her stomach and an ostomy valve for waste removal.
Since her transplant, she has been able to resume eating, though her diet by mouth is still limited to nutritional drinks and frozen treats.
Alannah will have to take anti-rejection medication for the rest of her life, and her grandparents will have to maintain a nearly germ-free home because her immune system is compromised.
Eventually, perhaps in a few months, Alannah may be able to venture out to the mall or church or even school. But she’ll never be able to swim in a lake or do other germ-riddled activities that most people take for granted.
“She’s always going to have to be careful,” her grandmother said.
Staff Writer Kelley Bouchard can be contacted at 791-6328 or at: kbouchard@pressherald.com
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