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Waning hope, a 6-organ transplant, life anew

Maine girl, 9, heads home after surgery at Children’s

By Martine Powers
Globe Staff / February 1, 2012
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A 9-year-old Maine girl will leave Children’s Hospital Boston today, three months after transplant surgeons replaced five of her abdominal organs and her esophagus to save her from a rare and aggressive cancer.

The finger-like tendrils of the tumor, which entwined the organs in tangles, required one of the most extensive transplant surgeries ever performed in the region, according to the New England Organ Bank. Alannah Shevenell of Hollis, Maine, received an esophagus, liver, stomach, spleen, pancreas, and small intestine - “a new set of parts,’’ as her grandmother calls it - in an operation led by Dr. Heung Bae Kim, director of the hospital’s Pediatric Transplant Center.

Now, the sassy girl who religiously follows “The Bachelor’’ on television and spouts comebacks to her grandmother’s every statement is back on her feet. And today, 98 days after the surgery, she is headed home.

“Dr. Kim, he saved me,’’ Alannah said yesterday, between playing hands of Crazy 8s.

Alannah can barely recall a life without hospital visits, tubes, and needles, and talk of the rare myofibroblastic tumor diagnosed when she was 4 years old. Surgeons tried to cut away chunks of the tumor to limit its size, but it kept returning and snaked up her esophagus, the tube that carries food from the throat to the stomach.

Chemotherapy did not work. The tumor distended her stomach. She could no longer swallow.

“The tumor was like cement gluing everything together,’’ recalled Debi Skolas, Alannah’s grandmother, who serves as one of Alannah’s primary guardians.

As time wore on, the future looked bleak. Oncologists ran out of treatment options. In July 2010, Skolas sat down with end-of-life caretakers to discuss how to manage Alannah’s last months.

As they walked out of the room, Kim walked in. The surgeon had a possibility: a transplant.

“I don’t think we ever gave up,’’ said Skolas, 57. “I don’t think I ever believed she was going to die.’’

Still, a transplant meant waiting, and child donors, especially those with all six of the necessary intact organs, were few and far between. Alannah was able to garner a spot on the transplant waiting list because her cancer was considered “benign’’; it was not spreading to other parts of her body. But it was growing, enveloping the organs in her abdomen and moving up into her chest. Last fall, her health began to deteriorate. Skolas began to lose hope that her granddaughter would survive to receive a transplant.

Finally, on Oct. 27 , at 10:45 p.m., the hospital called. A donor had been identified. Alannah would receive new organs the next day.

“Our house was wild,’’ Skolas recalled, laughing. The family called friends, who filled up the house at midnight. They did an “organ dance,’’ jumping around and cheering, said Skolas. “Yay, we have organs!’’

But when they arrived at the hospital at 6 a.m. the next day, Alannah grew worried. As she was wheeled into the operating room, she pulled her grandmother in close.

“What did you tell me, Alannah, when you went into the operating room?’’ Skolas said, watching the girl play on her hospital bed yesterday. “She was afraid she was going to die. And what happened? You didn’t die.’’

The surgery lasted more than 14 hours. Two-thirds of that time, Kim said, was spent removing the tumor from her body, peeling it off her aorta, the trunkline that carries blood from the heart to the rest of the body, and cutting out her organs.

The new organs came from one donor and were removed as an intact unit, which, Kim said, simplified the surgery. The esophagus was attached at the top, and the intestines were connected at the bottom with an ileostomy, an external pouch that holds waste. The organ set was also hooked up to the heart.

Alannah had some postsurgery difficulties: she needed a follow-up operation to stop fluid from leaking into her chest, as much as 2 to 3 liters per day.

During the whole time, her grandmother, who had worked as a period furniture maker before her granddaughter became sick, stayed at her side, sleeping every night in a blue recliner next to the bed.

“I’m going to need a hip replacement after these three months,’’ Skolas joked.

If all goes well, Alannah will lead an almost normal life when she returns home to the family’s big, white house on a 200-year-old farm. She takes 11 pills in the morning and 12 at night, mostly to prevent her body from rejecting the new organs. Because the drugs tamp down her immune system, she has to take precautions to avoid infections, so she can eat only fruit with thick rinds, such as watermelon and cantaloupe, and cannot play in lakes or standing water. And Skolas got rid of the 30 chickens on the farm.

Other than that, things will be back to normal, the grandmother said. The family has plans to paint Alannah’s bedroom, switching from baby pink and blue to fuchsia and aqua, colors fit for a tween, Skolas explained. “It’s not going to match anything else - bright and gaudy!’’

“No, it’s not gaudy! The colors you’re wearing now,’’ Alannah retorted, “now that’s gaudy.’’

Once the girl is settled back into her routine at home, expectations for respect-for-your-elders decorum will be reinstituted, Skolas insisted.

So will punishments for serving up attitude to her grandmother: writing 25 neat lines of “I will not talk back to my grandmother.’’

“When she gets home, she’ll have to do what she’s told,’’ Skolas said, shaking her head and grinning in spite of herself. “Things will be really different. It’ll be a whole new world.’’

Martine Powers can be reached at mpowers@globe.com. Follow her on Twitter @martinepowers.

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