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Baby with rare tumor heads home after outpouring of support

Baby Emma Medlin's story captured nationwide attention earlier this year.
Credit: Courtesy: Pilots for Patients
Nathanael and Amy Medlin are staying with their 10-month-old daughter Amy at St. Jude Children's Research Hospital. Emma was diagnosed with neuroblastoma, a rare type of cancer that affects babies and young children.

Update May 17:

Emma Medlin, the Monroe, Louisiana baby who was diagnosed with a rare tumor earlier this year, has improved enough to come home between treatments.

Analysis showed the large tumor in her abdomen was shrinking, and there was no sign of cancer in her bones. Emma will get to have some of her chemo treatments at a St. Jude affiliate hospital in Shreveport.

Pilots for Patients flew her back to Monroe on Saturday, which was Emma's first birthday.

Original story

Emma Medlin had never been sick. Then, in February, she started with a cold, then an ear infection, followed by a sore throat and finally — her family thought — rotavirus.

At a hospital in Monroe, Louisiana, Amy and Nathanael Medlin were told the 10-month-old was just taking a long time to get over rotavirus and were sent home.

"No sooner had we gone home than we noticed that her stomach was becoming really distended," Amy said.

They went to their pediatrician, who sent them to LSU Health Shreveport, where Emma got a CT scan and an MRI.

Doctors found a 7-centimeter by 10-centimeter mass in her abdomen.

"They didn't know exactly what it was, but they suspected neuroblastoma," Amy said. "At that point, they said the best place for you is going to be St. Jude's in Memphis." That was March 26.

Credit: Courtesy: Pilots for Patients
St. Jude Children's Research Hospital airlifted 10-month-old Emma Medlin and her mother Amy Medlin from Shreveport to Memphis on March 27. 

Amy and Emma were airlifted to St. Jude on March 27.

"If it hadn't been for Pilots for Patients, our mothers and Nathanael would not have been able to get there as soon as they did," Amy said. "They were able to go all the way to Shreveport, pick them up and then fly them from there to Memphis."

Pilots for Patients is a non-profit volunteer pilot organization that provides free flights for patients who need treatment at facilities that are far from home. Amy's brother, Alex Matherne, is marketing and events coordinator for the organization.

Once at St. Jude, the family was met by a familiar face. Erin Ham Harper grew up in Monroe. She's now a lead nurse practitioner/hospitalist at St. Jude.

"Everybody told us that when we got here, at St. Jude's, we were going to be just amazed and astounded by the level of care that we got here," Amy said. "I don't think we really understood it until we were here, but it has been absolutely incredible because they don't only think about the tiny, individual needs that your child has, they think about the family and the parents as well. And it's been incredible."

'They're ready with a plan'

St. Jude Children's Research Hospital confirmed that the tumor is neuroblastoma.

"The doctors, they come in, they're fully prepared, and they know our child's history frontwards and backwards. And they're ready — they're ready with a plan, which is really comforting for us as parents," she said.

Emma's tumor is Stage M, which is the equivalent to Stage 4 under a different classification system. It means the tumor has spread to other parts of the body than where it started.

"The good news is the cancer isn't aggressive, so her risk level — which is how they determine how the cancer is treated — the risk level is intermediate risk. It's not high risk," Amy said.

"If she was high risk, we'd be looking at pretty much every treatment out there, including radiation, chemotherapy, immunotherapy, surgery. But as it is, all she's getting is chemo and eventually surgery."

Emma will have surgery after an estimated eight rounds of chemo. Each session will require three days of chemotherapy, followed by about two weeks of recovery.

The family plans to stay on St. Jude's campus for at least the first two rounds of chemo. After that, if Emma is responding well, they could come home and fly to St. Jude or LSU Shreveport, which is an affiliate hospital, for further treatments.

In total, the course is expected to take about six months.

Nathanael said the staff at St. Jude told them not to blame pediatricians for not spotting the tumor. The cancer is incredibly rare — about 700 new cases are reported each year in the United States.

"It's not something that most doctors even see in their whole career," Nathanael said.

Neuroblastoma primarily affects babies and young children. According to the American Cancer Society, it "starts in certain very early forms of nerve cells found in an embryo or fetus." It's considered rare in general, but it's the most common form of cancer to affect infants.

"One of the things that the doctors said to us in Shreveport was that rotavirus could very well have been the best thing that ever happened to her," Amy said.

"You know, the symptoms of the rotavirus are pretty similar to the symptoms of her having her neuroblastoma... not being able to eat well, distended belly, vomiting, pain. A lot of that kind of goes hand-in-hand with both."

If they hadn't gone to Shreveport, she said, they don't know how long it would have taken to get a CT scan. You couldn't see any presence of the tumor until she started getting sick.

'Your world just kind of stops'

Amy and Nathanael said Emma's received excellent care at St. Jude, and so have they.

"It's pretty interesting when your world just kind of stops, and nothing outside the hospital really, really stops for you, and everything just kind of has to keep going one way or another, but at the same time, you really have to prioritize your child," Nathanael said.

Amy, who is about 21 weeks pregnant, said, "It's challenging taking care of myself while also taking care of Emma."

Nathanael said they've been overwhelmed by the support from the community. They've received an outpouring of messages over Facebook, friends set up a GoFundMe and the couple has received private messages.

"We're going to need every little bit of help that we can get, and it's been amazing to see what people are offering and the amount of prayers that are being given up for Emma all over Monroe, and the United States, and — we've heard, throughout the world, really," Amy said.

Nathanael said he's fortunate to have an understanding boss who has a baby of her own. She told him to take whatever time he needed to take Emma to the hospital.

"Which was a great comfort just to know that I didn't really have to worry about work on top of everything that we're dealing with," he said.

"I think it would have been 1,000 times harder had we not had the support from home. You know, both sets of our parents — my parents and Nathanael's parents — were here with us. They were at Shreveport, and then they came with us to St. Jude when we were, you know, figuring everything out," Amy said.

"And about that time is when everything was just kind of exploding on Facebook, and so many different moms who had had kids with cancer or specifically neuroblastoma, reached out to me and said 'My kid hit a home run tonight.' 'You know, there's a lot of hope for recovery.'

"I don't think we would be as OK as we are if it hadn't been for that."

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