Penn State

Their own private Thon: Family will miss weekend festivities due to chickenpox threat

Paula Engel-Herbert, 4, holds up a gem necklace as she asked her mom Mandy to help her into a princess pink polka dot dress on Wednesday, February 18, 2015.
Paula Engel-Herbert, 4, holds up a gem necklace as she asked her mom Mandy to help her into a princess pink polka dot dress on Wednesday, February 18, 2015. CDT photo

Paula Engel-Herbert is a princess in pink polka dots, a 4-year-old cyclone of energy that zips from building Lego castles to pouring imaginary tea from a plastic pot to demanding a dance partner spin her in circles, all at lightning speed.

You would never know she was sick. No one is filled with more life.

But her sister Emma, 6, whose face lights up like a birthday candle when she talks about her tagalong best friend, will tell you that sometimes you have to be careful with her.

Paula is one of just a handful of children in the whole country who live with multisystem Langerhans cell histiocytosis. It’s a long name for a disease that has few answers. Doctors debate whether it is a cancer or an immune dysfunction, what causes it and why.

What is known is what it does. It creates tumors. Paula was just 2 years old when she was diagnosed in 2012, but mother Mandy says that looking back, they could see the symptoms back to when she was just a baby.

Before they could even put a name to the disease that riddled the little girl’s body with tumors, the family was put in touch with the Four Diamonds Fund. They were adopted by GammAcacia, the Thon team that pairs Gamma Phi Beta sorority with the brothers of Acacia.

“It has made such a difference,” Mandy said.

Dad Roman Engel-Herbert is a Penn State professor, teaching materials science and engineering. The family is from Germany and moved to State College shortly before Paula was born. That leaves them with no family in the area to help share the load as they deal with the logistics of treatment and the emotional struggle.

“They are so supportive,” Mandy said. The family has even relied on the Thon team for help when Paula and her mother were in Hershey for treatments, leaving the rest of the family at home in State College with no transportation.

For Ally McLaughlin, of GammAcacia, the giving is not hard. She says the team gets even more back from the family.

“Roman is a genius and Mandy is just so loving and sweet. Paula is a package deal with Emma, and we treat them both the same,” McLaughlin said. “It’s special for them because we get so excited, but I think it’s more special for us because they are so close.”

GammAcacia students have spent holidays with the family. Paula sees them regularly on campus or in her house. She has met so many people through Thon that she now just assumes everyone knows who she is.

“We have seen her grow up. She’s not a baby anymore. She has such personality. She is such a bright little girl. She shows you every day in a physical way how to live with cancer. It’s easy to look at her and see how strong you can be if you’re positive, and she’s only 4,” McLaughlin said.

The family participated in Thon in 2013 and 2014. A collage of pictures is framed on the playroom wall. More pictures decorate a wall in the entry and a bright-colored scrapbook of photographers and memorabilia sits prominently in a living room shelf. It is something that the girls have enjoyed thoroughly and anticipated eagerly.

What Paula doesn’t know yet is that she will not be participating on Saturday.

She was one of a group of 24 Four Diamonds kids who were at a Nittany Lion basketball game Feb. 7 and exposed to chickenpox. For many children, that wouldn’t be a big deal. They may have been vaccinated against the varicella virus that causes the disease, or they might just resign themselves to a few itchy days covered in calamine lotion.

But with patients like Paula who have compromised immune systems, more care has to be taken, meaning that the Engel-Herberts will spend Saturday having their own private Thon celebration at home.

The little girls will be sad when they find out, but the big kids of GammAcacia are no happier.

“I don’t do this for my health. We do this for them. We do this so they can have a weekend when they don’t have to think about cancer,” McLaughlin said. “To know that they can’t come, that’s really hard for me. This is why we work so hard.”

But dancing is not just about a weekend in February for Paula. It’s something she does effortlessly and energetically, pirouetting from her pink castle to her art desk to her play kitchen. She might be sick, and she might know about the “magic button,” her name for the port where she receives medication, but cancer isn’t really a word that has meaning for her.

“You know, I’m a princess,” she whispers.

She is a princess with a whole team of people devoted to making her life everything it can be, including 300 or so people like McLaughlin and the Penn State student-run charity behind them, because every princess can use Four Diamonds.