Islip Terrace girl home after surgery on 6 organs

Hours after the extraordinary surgery last month that saved her life, 7-year-old Heather McNamara only had one question: "Is the cancer gone?"

Heather returned home Tuesday with her parents, Tina and Joe, a month after surgeons at Morgan Stanley Children's Hospital of NewYork-Presbyterian in Manhattan performed the rare and risky procedure that removed six of her organs in order to extract a tumor that was thought to be inoperable.

- Click for photos of Heather on her first day home

Doctors said the procedure was the first known case of its kind on a child in the world.

"She looks fabulous and she feels great," Tina McNamara said as the family drove home to Islip Terrace late Tuesday. "Every day is one day at a time, but we're getting back to normal."

A team of seven surgeons and eight other clinicians removed an abdominal tumor the size of a tennis ball during a 23-hour operation that began Feb. 6 and ended early the next morning.

Because the tumor had wrapped around several of Heather's vital organs and essential blood vessels, six organs, had to be removed. Three were reimplanted.

She faces a long recovery, but doctors believe that the cancer is gone and she has a good chance of living a relatively healthy life as long as it doesn't return.

Heather was first diagnosed with the rare, inflammatory myofibroblastic tumor in 2005 after she coughed up blood, her mother said. Doctors at Schneider Children's Hospital in New Hyde Park removed Heather's pylorus, or the lower part of her stomach.

"We thought she was fine," said Tina McNamara, who works with her husband at a Huntington Station security systems firm. "Four or five months later, it began to grow again, only in a different place."

They sought out specialists in Manhattan, Philadelphia and Miami, but, "They all told us there was nothing we could do."

A nurse in Miami suggested they contact Dr. Tomoaki Kato at NewYork-Presbyterian.

Kato proposed the rare surgery, which he performed once before, on a 63-year-old Miami woman last year. But Kato warned the family that the tumor already was strangling Heather's abdominal organs.

"The tumor was in a location, a very bad location, that is right on the major blood vessel that supplies blood to the abdominal organ," Kato said Tuesday. "The only possible cure for this disease is complete surgical removal."

As Heather's father, Joe McNamara, an Islip Terrace volunteer firefighter, waited outside the operating room in case he needed to donate part of his liver, doctors found the tumor had overtaken the pancreas and was surrounding major blood vessels.

Six organs -- the stomach, pancreas, liver, spleen, small intestine and large intestine -- were removed during the surgery, along with the tumor.

Using the same procedure as in transplants, the liver and intestines were kept cold and then reattached in Heather's body.

The other three organs, her pancreas, stomach and spleen, damaged too severely by the tumor, were removed permanently.

Doctors left the operating room with good news for Heather's parents.

"When they said Heather was coming out OK, it was a miracle," Tina McNamara said. "She's a little miracle."

Kato said the operation left him exhausted.

"I was about to collapse," he said. "The recovery so far is great. She may recover faster than me."

Tina McNamara said when Heather awoke from anesthesia and asked whether the cancer was gone, the little girl fell back asleep before she could get her answer.

Now without a stomach, Heather faces dietary restrictions, and without her pancreas she will suffer from diabetes, doctors said. For now, her diet will be limited -- pickles and potatoes in, hamburgers out.

Heather, a second-grader at Connetquot Elementary School in Islip Terrace, will be home-schooled for the rest of this year, her mother said.

"She loves normal little things and she can't wait to go to Build-a-Bear and she can't wait to have a manicure and a pedicure," she said.

And as she recovers her strength, Heather, who has an older sister Stephanie, 10, wants to be an ambassador of hope for other young cancer patients, her mother said.

"If I can just tell the kids there is hope," she said, quoting Heather as the little girl napped in the car. "Just because you have cancer, it's not the end."

- Click for photos of Heather on her first day home