Miranda’s Smile, memory live on through Thon

Miranda Kaye Zeigler’s parents will have one empty seat too many Friday when they drive from their Dillsburg home to the Bryce Jordan Center.

It will take them about two hours to get to the Penn State IFC/Panhellenic Dance Marathon, a weekend celebration of life saved from pediatric cancer, but also of life lost to the disease.

The void left in Tammi and Jeff Zeigler’s lives after Miranda’s death will be filled by her Thon organizations, Omega Phi Alpha and Alpha Gamma Rho, dozens of students who mobilize year-round to support the family.

The Zeiglers see themselves in a similar role.

They feel an obligation to support the students who fought to save Miranda’s life. Four students — pairs from the sorority and fraternity — will dance for 46 hours at Thon without sitting or sleeping.

OPhiA dancer Kim Fazio’s parents can’t make the trip.

She will look to the Zeiglers, who plan to be on the dance floor as much as possible, for motivation. Sunday will be important for them to be with their dancers.

“That’s when it’s hardest for them,” Tammi Zeigler said. “They’re on their second, third or fourth wind.”

The Zeiglers, as much as they outwardly encourage dancers to keep going, are also a constant reminder of Miranda’s story.

Miranda, 14, died from high risk T-cell acute lymphoblastic leukemia in 2009.

“The first time I heard her story I couldn’t believe how openly and freely Tammi could talk about it,” Fazio said. “It’s sad, but (Miranda) deserves to be remembered and never forgotten.”

Miranda wheeled around in a doctor’s stool when she was diagnosed with cancer.

“The oncologist asked if she understood,” Tammi Zeigler said. “Miranda said she did and then asked why she should worry.”

Miranda’s only concern at the time, Aug. 7, 2008, was how her hair would grow back. She didn’t want it to get curlier, because she used to spend 40 minutes straightening it.

Two weeks later a nurse would shave what was left of her hair, leaving mother and daughter crying together.

“I think it was more traumatic and upsetting than she thought it would be,” Tammi Zeigler said.

Miranda also battled infections, steroid-induced diabetes and pneumonia within the first month of treatments. On the 29th day of her fight against cancer she was taken off prednisone, a decision that led to a tiny bleed on her brain and a stroke.

She would not walk unassisted again.

“That’s when she lost a little bit of her strong spirit,” Jeff Zeigler said.

Miranda became dependent for nearly everything three months into chemotherapy.

Her hands were too puffy to navigate her phone, so she told her parents what to text to her friends. Her arms and legs became too weak to get into her wheelchair. One night when Tammi Zeigler bathed her on a shower chair Miranda cried the entire time.

“She had meltdowns when she had to, and I would break down with her,” Tammi said. “You have to realize she had just started to become a young woman, and everything that came with it was suddenly taken away from her.”

OPhiA and AGR members might not realize it, the Zeiglers said, but they are a reflection of what Miranda could be.

Young children would have played role a in Miranda’s life, because she wanted to be a kindergarten teacher. She also would have turned 22 in May, the same month she would have probably earned her undergraduate degree in education.

“I don’t think about it too much unless big moments come up that she would have experienced,” Tammi Zeigler said. “I still think of her as 14 years old. I didn’t make the connection until some of our lunches with our orgs. They talked about the Jonas Brothers, Rihanna, all the same things she liked. That’s a difficult thing to realize.”

The Zeiglers asked their Thon organizations to come out for Miranda’s 21st birthday on May 24.

“That was when they’d normally be gone from school, so we didn’t think too many of them could come out for her birthday,” Tammi Zeigler said. “We ended up having a huge birthday party for her.”

Tammi and Jeff Zeigler’s Facebook pages also blew up a few years ago on the anniversary of Miranda’s death.

“One year, out of nowhere, they started doing random acts of kindness,” Tammi Zeigler said. “We were blown away. There were hundreds of them in memory of Miranda telling us they did this and they did that for someone else.”

The movement caught on and gained a name — Miranda’s Smile — a moniker fitting for a girl with a contagious, almost permanent, smile and a helping hand for anyone in need.

“Sometimes I think you can get numb to Thon, but when you’re with Tammi and Jeff it puts everything into perspective,” AGR’s Vinny Favaloro said. “When you talk about Miranda it reminds us why we’re doing this.”

The seventh-year “Angel-versary” of Miranda’s death fell on a Saturday three weeks ago, an opportunity for the Zeiglers, AGR and OPhiA to do something more in her memory.

AGR hosted a lunch for the Zeiglers and OPhiA, an afternoon that gave the Zeiglers a chance to meet new sisters and brothers. They also filled Northland Bowl to capacity later that evening.

“I know it’s very hard for them, especially on that day,” OPhiaA’s Lauren Keech said. “We turned it into a fun time. They’re awesome people. There’s a reason why every time we have a chance to spend time with them there is an awesome turnout.”

Miranda went home nine days before Christmas 2008.

She beamed in pictures, but had what looked like a buzz cut. She would have been bald if her body was strong enough to handle the chemotherapy needed to combat the cancer.

“I look at those pictures now and think of how much work and pain that it took for her to be home,” Tammi Zeigler said. “She was so happy to be home, but she was in so much pain.”

Just four months earlier Miranda was carefree, a young lady taking steps toward independence.

She hosted her 14th birthday party to begin the summer of 2008. She got her first job at King’s Kid’s Camp, a church camp a half-mile away from her house. She also attended a Jonas Brothers concert the day before she got a sore throat, the first sign something was wrong.

“She was a huge Jonas Brothers fan,” Tammi said. “That was like the pinnacle of her life.”

Miranda became violently sick after Christmas. Doctors and nurses often swarmed her room at night to help her breathe.

“They called us to the quiet room on Jan. 2,” Tammi said. “That’s never a good thing.”

Doctors diagnosed Miranda with another illness — secondary hemophagocytic lymphohistiocytosis, a rare bone marrow disease that occurs in one of every 1.2 million pediatric cancer patients.

Her likelihood of survival dropped to less than 2 percent.

“We felt it was a rough patch we had to get through,” Jeff said. “That’s how we talked to Miranda about it, too. We talked like we normally would have and stayed positive.”

There’s a misconception that Thon benefits only younger children.

It is only natural to picture a child, not a teenager, when you hear someone say pediatric cancer.

“Miranda was always in (Hershey), and it was really sweet and kind that people donated things like crayons and coloring books to the hospital for children,” Tammi Zeigler said. “Little kids would ride tricycles up and down the hallway, and Miranda laid in her bed and talked about how she would do things for teenagers with cancer.”

The Zeiglers created the Miranda K. Zeigler Memorial Foundation a few months after she died to honor her aspirations and to assist teenage Thon children.

“We know what they’re going through,” Jeff Zeigler said. “If for a moment in time we can give them a little joy, then that’s what we’re doing.”

The foundation’s largest fundraiser was in January during an annual basketball outing hosted by Northern York County School District. More than $10,000 was raised.

The Zeiglers also organize events that include 5Ks and golf outings to raise money to purchase gifts like laptops and iPhones for teenagers battling cancer. On Christmas Eve and New Year’s Eve, every child gets a gift bag that includes gift cards, snacks and games.

The foundation has also helped families pay for things like groceries and car payments.

“It doesn’t matter if your child is 8 or 18,” Tammi Zeigler said. “If they’re in the hospital, you don’t want to leave them. That puts families in difficult situations. We’ve known families who were on the verge of losing their house.”

Every gift is appropriately named.

“We call them smiles,” Jeff Zeigler said.

Doctors gave Miranda two options.

She could go home for hospice or attempt two chemotherapies to try to get the cancer to go into remission, the only way she could get a bone marrow transplant.

The first chemotherapy didn’t work, and the second caused neurological damage.

Miranda also had trouble understanding what was happening around her and lost some of her vision. She developed vancomycin-resistant enterococcus, a bacteria that made her pneumonia completely resistant to antibiotics, causing her to go into heart, lung and kidney failure.

“I don’t think we ever thought we’d get to that point,” Jeff Zeigler said. “It was awful.”

Miranda regained her spunk the day she was transported to the pediatric intensive care unit in late January 2009.

Nurses were two hours late, and Miranda wanted to know what was taking so long. She had grown up in a military family and took on her dad’s personality — goofy and loving, but also prompt and stubborn.

“She was irritated, but also funny and sarcastic about it,” Tammi said. “Those little moments of Miranda being herself meant a lot.”

Nurses wheeled Miranda to the PICU, the last time her parents would speak to her.

Miranda, on ventilation, slept in the days before she died.

The Zeiglers don’t remember much about Miranda’s memorial service two days later, but they saw a large group of young people who they didn’t recognize. It was Miranda’s Thon organizations who never met her.

She was always too sick for them to visit.

“There was a huge snowstorm that day and night,” Tammi Zeigler said. “I was blown away that they drove all the way from State College (to Dillsburg).”

Thon weekend 2009 was three weeks away.

The Zeiglers decided to go, but some people questioned how they could attend so soon after Miranda’s death.

“We said, ‘If they came all the way for her, we’re going there for them,’ ” Tammi Zeigler said. “You go to Thon and it’s like 15,000 people hugging us at once. That’s a real hug. That’s why we go. We go for other families, we go for a cure and we go to support our dancers. It’s good for us, too.”

This story was originally published February 18, 2016 at 12:02 PM with the headline "Miranda’s Smile, memory live on through Thon."