NORMAL, Ill. (WMBD) — Meet six-year-old Emma Welp. She loves song-filled dance parties, her stuffed animals, and family time.
Emma is no stranger to the WMBD-TV/WYZZ team. Over the years, she’s made show appearances with her twin sister, Abby and her dad, Mark Welp.
“She is very funny. She’s very physical. She’s all over the place, but in a good way,” Mark said.
Mark and his wife, Laura cherish the bond that all four of their daughters share. Emma’s strongest connection though, is with Abby, her built-in best friend.
“They’re each other’s person,” said Laura. “They definitely hold up for each other. They have each other’s back.”
That support is more important now than ever because Emma has cancer. Oct. 18, 2020, was just like any other Sunday for Emma, until a headache changed her life.
“It just came out of nowhere,” said Mark. “One day she’s fine and the next day she’s lethargic, unresponsive. I took her to urgent care and within five minutes they told me to take her to the emergency room and within about 15 minutes she was critical. Like critical? How could that be? And then we were off to the races from there.”
Emma was intubated in the Twin Cities, then life-flighted to OSF Children’s Hospital in Peoria.
Laura said, “They found a brain bleed and we knew that early on, and they were just kind of watching it. But then once her left side became more unresponsive–weaker than her right side–they decided to go in and do surgery.”
Surgeons were able to pull a blood clot from Emma’s cerebellum. But looking further, they found the unimaginable.
“Diffuse Intrinsic Pontine Glioma (DIPG) and what it basically means is that it’s an aggressive form of tumor that infiltrates within a part of her brain, within the brain stem,” explained Dr. Brinda Mehta. She is a pediatric hematologist-oncologist at OSF Children’s Hospital and Emma’s treating physician at the Pediatric Hematology-Oncology Clinic. Mehta also serves as a faculty assistant professor at the University of Illinois College of Medicine in Peoria.
Mehta went on to explain the symptoms of DIPG.
“If it’s a little bit slow-growing, then it can present with weakness of the arms and legs and because it controls–because it’s in the brain stem area, they can have facial nerve paralysis or difficulty chewing, sometimes difficulty breathing, sometimes difficulty swallowing,” she said.
As of now, there is no known cause of DIPG.
“It’s very rare,” Mehta stated. “Only about 200-300 diagnoses per year in the U.S. and it’s mainly in children.”
The prognosis for DIPG is grim. The cancer is inoperable and incurable because of the tumor’s critical location. Emma’s time is limited.
“With this particular diagnosis, so far if you look at literatures and good literature sources, it’s about a year — 15 months,” said Mehta.
The DIPG diagnosis led to Emma spending 10 days at OSF Children’s Hospital. Her days were filled with surgeries, biopsies, MRI’s and blood draws.
But the first-grader is still finding fun even in the midst of her discomfort.
Emma said, “I was in a machine and there was a mirror up above me and I got to watch a movie. [Shelbey Roberts: What kind of movie did you get to watch?] ‘The Greatest Showman’ because it’s my favorite movie.”
During Emma’s time in the hospital, Mark and Laura made the hour-long commute from Normal to Peoria daily, spending days and nights by their daughter’s bedside. At the same time, they were juggling schedules to also tend to Abby.
After finally being stabilized, doctors cleared Emma to come home.
“I mean she was recovering really well,” said Mark. “But just to see her having to use a walker and having a feeding tube was really tough. But having her home was great. The hospital stay felt like it was six months.”
Emma was thriving from what Mark, Laura and Dr. Mehta could see.
Laura said, “It was just nice to kind of start doing some normal, family things again because it just came out of nowhere. So, we didn’t know we’d have that time back.”
That normalcy was short-lived. Mark and Laura decided to start Emma on a six-week radiation program as a way to buy more time with their daughter.
“Sometimes it’s hard going there because sometimes I don’t like stuff they’re going to do,” said Emma. “And sometimes when I just go there, there’s like a couple of things I have to do and then I’m done. And then they’re really easy. So that’s like fast.”
Just in time for Christmas, Emma successfully completed her radiation treatment. The Welps documented that day on the family’s #EmbracingEmma Facebook page. To celebrate, Mark and Laura surprised Emma and Abby with a trip to Disney World. Even the Welp’s older twin daughters, Anna and Lauren, came in from California.
Emma smiled, “We really had a good time.”
It was time that the Welps weren’t taking for granted. Thanks to the Make-A-Wish Foundation, Emma also had her own Disney princess party, including a carriage ride, tea party and even a princess coronation ceremony.
The entire Central Illinois community and beyond has rallied behind the Welp family, in particular, Laura Runkel. As a family friend, she launched a GoFundMe page on behalf of Emma. So far, it’s raised more than $88,000.
“Lots of groups that we belong to that have really gone out of their way to just do whatever they can to help and we feel the love and support. It doesn’t always heal our hearts, but we do feel it,” said Laura Welp.
The Welp’s only hope was for Emma to be admitted to a clinical trial. The opportunity presented itself at Laurie Children’s Hospital in Chicago. But then another blow: the tumor had spread to Emma’s spine.
“So that kind of changed everything,” said Mark. “Just when we thought we were going this way, we had to go that way. And now there’s really not a lot we can do.”
This six-year-old full of life is slowly succumbing to her condition.
Laura said, “Our mornings are probably the worst. Usually, she wakes up either with like a headache or she’s vomiting a little bit.”
“People see pictures and videos of her. She looks so normal. She’s happy. She looks great. But her condition is what it is,” stated Mark.
Emma is unaware of the gravity of her health.
“She doesn’t know. She knows that she had a brain bleed and that she’s still having troubles with headaches and tummy aches and that kind of stuff, but being six years old, we don’t feel like we need to scare her,” Laura said as she teared up.
But even of the midst of this internal battle, Emma is finding the little things to be thankful for.
“[Shelbey Roberts: Even when you’re having your hard days, what really cheers you up?] Like a little treat. It doesn’t have to be a big treat. Just maybe like a kiss or something,” said Emma.
The focus now is keeping Emma happy and comfortable. The Welps try to maintain some sort of normalcy as they balance a new routine. Laura has stopped working as a teacher. Mark continues to bring nightly newscasts Central Illinois viewers. He is now in a period of reflection.
“It’s just a good time to kind of look at your own life and say, ‘This is what’s important,’ because all the problems that we had before October [don’t matter]–haven’t even thought about them. Your family, your health, all that matters,” he said.
Between recurring hospital visits and first grade classes, Emma is finding the joy being around her family and just being a kid.
“[Shelbey Roberts: What should people at home know about you?] That I’m smart. And brave because there’s hard times,” said Emma.