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Unexpected vacation ending leads to rare tumor discovery
Kelly and Jered Iverson of Grand Meadow, Minnesota, had planned a perfect Hawaiian vacation for themselves and their daughters, Isabelle (Izzy) and Emmy. In March, they enjoyed seven days on Maui, where they went whale watching, attended a luau, toured the Road to Hana and spent hours on the beach.
"Izzy is a great traveler," says Jered of his 11-year-old daughter, who was born with a developmental delay. "She likes to see all the sights and loves the beach."
After vacation, the family was looking forward to unpacking and sleeping in their own beds. This plan was interrupted, however, when Izzy started to feel sick during a layover at the Denver airport.
"Izzy was really pale all of a sudden. I thought she didn't sleep on the airplane or eat much before, so maybe she was just tired or had low blood sugar," says Kelly.
Kelly and Jered gave Izzy a few snacks and had her rest. Soon, though, it became apparent that her discomfort was more than they initially suspected. Izzy told her parents that her back hurt and she became increasingly uncomfortable.
"It's hard for Izzy to articulate pain, like how it feels and exactly where," explains Kelly. "I could tell when the pain would hit her because she would shudder a bit. We knew it was real pain by the way she was wincing."
The family needed to make a decision. They could board their connecting flight to Minneapolis or remain in Denver and seek medical care. They decided to head home and gave Izzy an ibuprofen to try to make her more comfortable. The two-hour flight from Denver to Minneapolis was difficult.
"Soon she was crying and saying 'ow, ow, ow,'" says Jered. "We were thinking she might have appendicitis, be constipated or something like that."
The couple and flight crew tried their best to keep Izzy comfortable and calm during the flight.
"It was awful. We were exhausted and feeling overloaded with anxiety," says Kelly. "Luckily, we had some very kind people sitting around us on the flight."
First stop: Emergency Department
Unfamiliar with the health care options in the Twin Cities, the couple decided to stop at the first Mayo Clinic location on their drive home from the airport: Mayo Clinic Health System in Cannon Falls.
An emergency nurse practitioner, David Steele, took the lead in unraveling the mystery of Izzy's pain and discomfort.
"When the family arrived, the child looked sick, yet I didn't feel it was related to constipation. She had some abdominal pain, so I was somewhat concerned about appendicitis. That was my initial approach," says David. "With all cases, it is important not to latch on to a diagnosis early and to keep your mind open to other things based on test results."
This was the perfect approach in Izzy's case. "Her blood tests showed her white blood count was elevated, and thus I was concerned for possible appendicitis and recommended a CT scan of Izzy's abdomen," says David.
The scan ruled out appendicitis but revealed a shocking surprise. Izzy had a significant mass near her left lung. Its presence was staggering, but so was its composition. While additional tests would be necessary, the care team believed Izzy's mass was a teratoma.
Teratomas are rare, germ-cell tumors, explains Michael Ishitani, M.D., a Mayo Clinic pediatric surgeon.
"They are usually benign tumors and are formed during gestation," he says. "They consist of tissue from all different parts of the body. A classic teratoma will contain hair, skin, bone, and muscle and organ tissues."
David explained to the couple that Izzy would need to be transferred to Mayo Clinic in Rochester for a surgical evaluation.
"I felt bad for the family, as they just got off a long flight from Hawaii and they were ending their vacation at an emergency department," says David. "Izzy’s mother was such an advocate for her, which was helpful to all of us and easier for all involved."
Transfer to Mayo Clinic
While shaken, Jered and Kelly tried to remain optimistic for their daughter.
"We tried, but we were puddles — just a mess," says Kelly. "You want to remain strong for your children, but I remember sobbing in the hall."
Kelly's parents met them in Cannon Falls to provide comfort and support. They also took Emmy home so Jered and Kelly could focus on Izzy. She was transported to St. Marys Hospital by ambulance. Kelly rode along and Jered followed behind in the family's car.
The following day, Izzy had additional tests and another CT scan to confirm the location of the mass. Dr. Ishitani explained that he believed Izzy had a teratoma and would need surgery the next day to remove it. He also explained that most teratomas are benign but, rarely, they can be cancerous.
"The diagnosis of teratoma was highly likely, but we wouldn't know 100% for sure until it was removed and examined under the microscope," he says.
Kelly and Jered were relieved.
"It was just an enormous amount of comfort because we knew she could handle a surgical procedure," says Kelly.
According to Dr. Ishitani, teratomas in the chest are exceedingly rare, and he had not seen one in his 30 years of practice before caring for Izzy. Most of the time, teratomas develop in the ovaries, testes or tailbone.
"The fact that this one is in the chest is unusual," he says. "This one was slightly attached to the pericardium sack in the middle of the chest, but most of it was sitting right in the center of the chest and pushing the lungs to the side. It was in the thoracic cavity adjacent to the lungs but not invading the lungs."
Child life specialists kept Izzy busy with painting and other activities that afternoon and evening. The following day, Izzy was wheeled into an operating room and Dr. Ishitani performed the three-hour surgery to remove the fist-sized mass, which occupied about one-third of her chest. He confirmed it was a teratoma due to its composition.
Kelly and Jered got to see a photo of the teratoma after surgery, and the family nicknamed it "Izzy's Demogorgon" after a creature on the TV show "Stranger Things." Izzy remained in the hospital for two days after surgery. During this time, a pediatric ICU nurse, Marlee, made a lasting impression on Izzy.
"All of the staff was phenomenal. They came down to her level and made sure she was comfortable," says Kelly. "Now Izzy plays with this little doctor kit after school every day. She pretends to be Marlee and takes care of patients."
A few days after surgery, the pathology reports showed that Izzy's teratoma was benign and no additional care would be necessary. The family got more good news when Dr. Ishitani told them it shouldn't cause any lasting effects on Izzy's health.
"It's unlikely that it would affect her lung capacity going forward in the future," says Dr. Ishitani. "There's a mild compressive effect before surgery, but she should recover just fine."
And recover she did. Izzy returned to school about a week after her surgery, and her parents say that she's feeling fine. She's also looking forward to celebrating her 12th birthday in May.
"We are just overwhelmed with the staff and how they treated her, but also how they treated us. We were really scared at first, but they had so much compassion," says Kelly. "I was just so impressed with how the teams work together. It was a really easy transition from Cannon Falls to Rochester. Everybody knew what was going on when they came into the room. They were all so great with her and us."