Making it work

UNIVERSITY PARK, Pa. – Mandy Engel-Herbert is responsible for nearly 400 college students on a daily basis. As the undergraduate program assistant in the Harold and Inge Marcus Department of Industrial and Manufacturing Engineering, she makes sure that students in the industrial engineering program are meeting their degree requirements while also answering any of their—or their parents’—questions about course availability, studying abroad and advising.

Many times, she serves as their mother away from home—listening to their troubles, serving as a sounding board for advice and celebrating their individual successes throughout the year.

“Every day when I come to the office is different so I don’t always know what to expect, which can be challenging,” said Engel-Herbert. “But I really enjoy getting to work with faculty, staff and students together and everyone in our department is easy to get along with so that makes my job easier.”

Engel-Herbert also has two high-spirited, headstrong daughters of her own to care for with husband Roman Engel-Herbert, assistant professor of materials science and engineering at Penn State—Emma, 7 years old, and Paula, 5 years old.

But there’s so much more to their lives than the normal chaos of a household with two working parents and two children under the age of 10.

A few months after she celebrated her first birthday, Paula was diagnosed with multisystem Langerhans cell histiocytosis, a rare condition that afflicts only a handful of children in the United States.

The diagnosis was a devastating shock to the family who moved from their native Germany to the United States in 2007.

But Mandy said that she knew something was “just not right” when Paula was only a few weeks old. There were rashes that never went away despite treatment and there were stretches when the normally happy, independent little girl only wanted to be carried. She also developed numerous ear infections that made her very uncomfortable and irritable so Mandy was constantly bringing her to the doctor or the emergency room (ER) for answers.

When Paula was 10 months old, she started to have intermittent low-grade fevers without any other symptoms, and she had to be hospitalized due to neutropenia—or low white blood cell count.

There were other signs. Paula started crawling around the same time the fevers started but she would never walk on her own, always relying on holding on to her parents’ hands for support. Then one day in April 2012, when she was 17 months old, she just stopped crawling altogether. So Mandy brought her to the ER yet again while Roman was away on travel for his job.

It was during that trip when everything changed.

The doctor ordered an X-ray and the scans revealed a large lesion on her left femur, all the way up to her hip.

“Two-thirds of the bone was covered with a mass, so on the X-ray her leg looked like a chicken drumstick,” said Mandy.

From there Mandy and Paula were sent straight to Penn State Hershey Medical Center for further tests and after a couple of days, they finally had a diagnosis.

“Mandy called me with a tone in her voice and I instantaneously knew—even though I could not understand all of the details—that things were extremely serious,” said Roman. “I booked a flight home immediately to be with Emma while Mandy stayed with Paula.

“It’s hard to explain but when you know that something very serious is wrong with your child, you feel emotionally and mentally numb. At least I did. It seems almost that your body prepares for a possible event of very strong emotional distress that could deeply hurt your soul and destroy your morale.”

Multisystem Langerhans cell histiocytosis has stirred debate among researchers as to whether it should be classified as a form of cancer or a malfunction in the immune system. What cannot be debated, however, are the debilitating tumors the disease causes that can pop up at any time and the devastating effects and stress the disease and the treatments have had on Paula’s little body and the entire Engel-Herbert family.

Still trying to adjust to life in the United States while navigating a health care system that was still foreign to them was overwhelming for the couple. However once Paula had a diagnosis, social workers and a psychologist from Four Diamonds came to speak to the family about the financial and emotional support they would like to provide.

Four Diamonds assists children treated for cancer at Penn State Hershey Children’s Hospital and their families. Because of the community’s steady and generous support, the organization has been able to assist 100 percent of the childhood cancer patients who have been treated at Penn State Hershey.

“We have established a relationship of trust and respect with the Four Diamonds social workers and they have become 'our parents' for making some very difficult decisions,” said Roman. “The moral support that we are receiving is overwhelming and the positive interaction we have with everyone involved inspires and drives us.”

Much of the financial and emotional support for the families comes from the Penn State IFC/Panhellenic Dance Marathon, widely known as THON. As the largest student-run philanthropy in the world, THON is an annual yearlong effort to raise funds and awareness for the fight against pediatric cancer. Students form dance teams that each support a Four Diamonds family throughout the year, which culminates in a 46-hour dance marathon and related activities each spring.

Shortly after Paula’s diagnosis and the meeting with Four Diamonds workers, the family was paired with GammAcacia, the THON team that pairs the Gamma Phi Beta sorority with the Acacia fraternity.

“We are so incredibly lucky to get to be supporting the Engel-Herbert family,” said Kate Brandell, a senior majoring in advertising/public relations and a member of the GammAcacia THON team. “We have the opportunity to spend a lot of time with them throughout the year, which contributes to our organization being such a tight-knit family.”

Spending time with the Engel-Herbert family has really put some of the struggles of families dealing with pediatric cancer in perspective for the THON teams that support them, explained Brandell.

“It’s amazing that THON donates nearly 96 cents of every dollar to the Four Diamonds Fund and that families, like the Engel-Herberts, don’t have to see medical bills,” she said. “It makes me want to work as hard as I can to try and ease their stresses a little bit and it really drives home how important it is for us as an organization to continue working hard throughout the year to provide support and encouragement.”

There have been four relapses when tumors have come back after going into remission since Paula’s initial diagnosis—the latest was just a few weeks ago.

Currently Paula is receiving chemotherapy both orally, in the form of two different pills, and intravenously, through the use of a port she has implanted in her chest, plus rounds of steroids.

Mandy and Roman take Paula to have her blood drawn regularly, as the level of her blood cell counts determines if she’s able to attend school or if she has to stay home to avoid potential exposure to infection. As soon as she spikes a fever, Paula must be taken to the doctor to test for low counts and/or infections. Sometimes she’ll need intravenous antibiotics to help her system recover or even a blood transfusion if her counts are very low.

“Coming to work helps me cope with Paula’s health issues,” explained Mandy. “Her disease, active or not, is always present. But going to work, interacting with people and helping students and faculty simply by doing my job, gives me some sort of normalcy and really a sense of sanity.

“My husband and I are also really very fortunate and appreciative to work with people who are so supportive and understanding of our situation since our schedules can change on the dime based on how Paula is doing.”

Roman echoed his wife’s sentiments about finding a sanctuary through his work.

“It is important to have a life outside of what’s going on at home and my job is part of it,” he said. “Dealing with everyday problems, such as ‘why is this computer program not updating,’ is a welcoming distraction from the demanding situation at home. It allows us to find a better balance, to be a part of ‘normal life’ and stay for some time outside the world of pediatric cancer.”

Mandy, Roman and the GammAcacia THON team are also very mindful of Emma, the family’s protective older daughter, who does her best to look out for her little sister. She doesn’t know what Paula’s illness is called but if someone asks her what her little sister has, she tells them it’s cancer, explained Mandy.

“She knows when Paula is feeling better and when she needs treatment, and she also knows that some other children have won or lost their battle with cancer,” she said. “During ‘Family Hour’ at last year’s THON, Emma mentioned to me that it is not fair that all of the kids there are so sick.”

Four Diamonds and the GammAcacia team provide much of the support the family receives and THON is a culmination of that love, support and commitment to the family.

“We have babysat Paula and Emma, gone bowling, had a cookout at the Engel-Herberts’ house and have been with them at other THON-related events, like THON Hoops and the Family Carnival,” said Brandell.

After a year hiatus from THON when Paula couldn’t attend due to her exposure to chickenpox at a Penn State basketball game (she was never infected but the risk alone was enough to force Paula to stay home), the Engel-Herberts are looking forward to fully taking part in THON weekend again this year.

Both of the Engel-Herbert children, and their THON team, look forward to all of the activities that surround the event but it is THON weekend that they anticipate most every spring.

“It’s the one time of year when they are unleashed and get to celebrate being children with the dancers who look out for them and support them. They always have a blast,” said Mandy.

For Brandell, it is a culmination and celebration of four years of supporting this family and having a connection with Paula.

“I’m really looking forward to being with Paula during the THON fashion show and as a THON dancer, it will be great to have the Engel-Herberts down on the floor for support throughout the weekend,” she said. “Getting to know this family throughout my four years here at Penn State has made my THON experiences so special and has made me feel an even closer connection to the cause of finding a cure for pediatric cancer.” 

Goodreau is also excited to be on the floor dancing with the family and says the whole experience of THON has touched her life on many levels.

“Paula is only 5 years old and has faced a lot more than many people will face in their entire lifetime,” she said. “No child should ever have to go through that. And no parent should ever have to watch their child go through it. That is why we dance.”

The story of the Engel-Herbert family was originally featured in the Centre Daily Times last year.