HOLLIS — Alannah Shevenell ventured outdoors Thursday, drawn by the sunshine and warm breezes and a soap bubble-propelled rocket launcher.
The 9-year-old girl, who came home five weeks ago after a groundbreaking multi-organ transplant, did what she could to make the small plastic toy take flight. With all her might, she stomped on the air-filled balloon that launches the rocket, unfazed by muddy splashes on her white knitted dress, lime-green leggings and white boots.
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When the rocket popped up only a few inches, she called for help from her grandfather, Jamie Skolas, who stood a few feet away in their driveway on River Road. “Really jump on it, Gig,” Alannah urged her grandfather, slightly exasperated.
Skolas, 57, set aside his pride and jumped on the yellow balloon, producing equally disappointing results. Soon, the wise-cracking kid was off to other pursuits, playing a tune on a harmonica, putting yarn hair on a clothespin doll, keeping track of the family dogs and cats.
Alannah returned home on Feb. 1 from Children’s Hospital Boston, where she underwent 14 hours of surgery on Oct. 29. The transplant team removed a rare and relentless tumor that was threatening her life and replaced six organs that were caught in its tentacles — her stomach, pancreas, spleen, liver and small bowel, and one-third of her esophagus.
Hospital officials said Alannah’s surgery 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 has been doing well at home, she and her grandparents said Thursday. She is increasingly active, having gone sledding and scooter-riding lately. She meets with her tutor five days a week, though she still hates doing homework. And she loves hanging out in her newly painted purple and lime-green bedroom.
But a rigorous schedule of anti-rejection drugs, medical treatments and doctor’s appointments in Maine and Boston continues to present challenges. Alannah’s body is still adjusting to its new parts, a process that periodically makes her feel nauseated, tired, frustrated and fussy. And she still has trouble swallowing regular food, something she misses a lot.
“Sometimes it seems like we took a couple steps back,” Alannah said in a rare moment of sarcasm-free candor.
Debi and Jamie Skolas take turns getting up two to four times each night to give Alannah medication or respond to an alarm on her medical equipment. The alarm on her feeding tube goes off if she simply lies on it the wrong way.
“She can sleep through it,” Jamie Skolas said, “but I can hear it from two rooms away.”
Alannah has dubbed her grandmother the “Poop Queen,” for her skill in dealing with Alannah’s ostomy bag, emptying it when it’s full and cleaning up when it sometimes explodes. The coloring in some of her drugs leaves bright yellow stains on Alannah’s clothes, which have become more precious and hard to find.
“Shopping for clothes is a huge challenge now,” said Debi Skolas, 57, because Alannah’s outfits can’t interfere with the feeding tube in her upper abdomen or the ostomy in her lower abdomen.
The Skolases try to limit Alannah’s exposure to germs when she has blood drawn twice a week at a lab in Gorham. They douse her hands with antibacterial gel after she touches door knobs and railings.
“But she’s 9 years old,” Jamie Skolas said. “She doesn’t think and she touches everything.”
The Skolases have been making weekly trips to Boston for checkups, getting up before dawn to avoid getting caught in traffic.
“We get up at O-dark-hundred,” Alannah said, copying her grandfather’s lingo.
Alannah’s health in recent weeks has been good, except for a few weeks ago, when blood tests showed her liver enzymes had spiked. The Skolases quickly drove into Boston for a two-day hospital stay.
“They thought I was in rejection,” Alannah said, but it turned out she had a blocked bile duct and simply needed antibiotics.
“The first year after transplant isn’t a walk in the park,” Debi Skolas said. “We knew that going in. Hopefully, when we get past the one-year mark, a lot of these challenges will be behind us.”
One thing the Skolases didn’t expect was the global support they have received since Alannah’s surgery made headlines around the world. A Brazilian television news team came to Hollis to do a segment on Alannah.
She has received hundreds of cards and letters from well-wishers across the United States, Canada and beyond. An 86-year-old great-grandmother in Arizona wrote a letter encouraging Alannah to “live one day at a time and make it a masterpiece.” More arrive every day.
“A lot of people read about Alannah, but it’s amazing the number of people who took the time to write,” Jamie Skolas said.
The Skolases still struggle to make ends meet, with Jamie Skolas running their period furniture-making business nearly single-handedly. Alannah’s medical care is covered by MaineCare, but the family’s other expenses have sapped their savings since Alannah was diagnosed with cancer when she was 5.
The Skolases have learned to take it all in stride and see the humor in challenges that would leave others screaming or crying.
“If I got upset about everything, I’d be throwing myself in the middle of the road,” Debi Skolas said. “Children don’t come with certificates of perfection. People have all types of problems. Some can’t get around without wheelchairs. I like to think my glass is half full. She’s still this wonderful gift in our lives.”
In addition to the transplant team, the Skolases are grateful to the oncology team at Children’s Hospital Boston that helped Alannah fight for her life for nearly four years before the transplant. Many of her former doctors and nurses still check on her progress.
The Skolases also are glad to have met many parents, children and others who fought similar cancer battles and inspired them along the way. Some of them haven’t been as fortunate as Alannah, who’s looking forward to going fishing with her Gig this summer on the Saco River behind their house.
“This isn’t the direction we expected our life to go,” Debi Skolas said. “But we’ve met some amazing people and we’ve taken this amazing journey and in many ways it has enriched our lives. In many ways, we feel very lucky.”
Staff Writer Kelley Bouchard can be contacted at 791-6328 or at:
kbouchard@pressherald.com
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