DIPG

Kids nearby have the same rare tumor that killed his daughter. He wants to know why.

Why this family chose to protect others from their daughter’s cancer diagnosis

David and Theresa Mohler talk about some of the difficulties in dealing with a devastating diagnosis. Their daughter, Sophia, was the first child in Jackson County to be diagnosed with DIPG in 2009.
Up Next
David and Theresa Mohler talk about some of the difficulties in dealing with a devastating diagnosis. Their daughter, Sophia, was the first child in Jackson County to be diagnosed with DIPG in 2009.

A portrait of the little girl with brown eyes and hair pulled back in a bun for a dance routine hangs on a wall in her parents’ doughnut shop.

The dates of Sophia Mohler’s birth and death are inscribed on a small gold plate at the bottom of frame. June 4, 2002 - September 7, 2010.

The photo is a tribute to the youngest child of David and Theresa Mohler, owners of The TatoNut Donut Shop, an institution in downtown Ocean Springs.

A sign for an organization that supports cancer research hangs beside the picture.

Doctors diagnosed Sophia, at age 7, with a rare and incurable brain tumor known as diffuse intrinsic pontine glioma.

She was the first child known to be diagnosed with DIPG in Ocean Springs.

A second child has since died of the disease, and the same diagnosis for a third Ocean Springs child came in February.

A relative of the Mohlers called to tell them about the latest child suffering from DIPG. Sophia Myers also was diagnosed at age 7.

“Then, we started getting text messages that people were praying for us because they knew it would be upsetting,” Theresa Mohler said. “Just because it ended with our Sophia, it didn’t end. It’s still going on.”

David Mohler couldn’t believe it.

“It’s just incomprehensible,” he said. “I don’t understand it at all, and you want to know more about what is going on. Why is this happening?”

The Mohlers reached out to the doctor who treated their Sophia to tell him about the third case. The doctor, they said, thought the number of cases warranted research.

The diagnosis

On Aug. 30, 2009, doctors diagnosed Sophia Mohler, a third-grader St. Alphonsus Catholic School who adored animals, loved to dance and never backed down from a challenge.

The diagnosis came after her parents started to notice subtle changes in Sophia.

She started experiencing headaches that hit suddenly but didn’t last long. Doctors thought she was having the same sinus problems other members of her family battled.

She developed problems with her eyesight and one of her eyes started to shift inward.

Her family thought maybe it was Sophia’s vision because her older sister and idol — Katelyn — had problems with her eyes crossing in her early years. An ophthalmologist prescribed glasses.

Just because it ended with our Sophia, it didn’t end. It’s still going on.

Theresa Mohler

When Sophia’s eyesight didn’t improve and one of her eyes continued to shift, the doctor ordered an MRI.

The doctor made sure Sophia was outside of the room when he shared the terminal diagnosis with her parents.

When the parents walked out, Sophia asked them if they could stop by the mall.

“So, we go from the, ‘I’m sorry, it’s terminal,’ to shopping at Claire’s when we really just felt like throwing up,” Theresa Mohler said.

‘She never wanted to stop’

The family traveled back and forth to MD Anderson Cancer Center in Houston for Sophia’s treatments, including radiation therapy, oral chemotherapy and clinical drug trials.

Every move the family made was to help and support Sophia.

The Mohlers trusted “their faith and the grace of God” for guidance and sustenance.

No matter what, Sophia always looked forward to a new day.

“She never wanted to stop, even when she was sick,” her mother said. “When she got up, she wanted to plan for the day. If we just went to walk around a shopping center or went and ate somewhere different, that was what she wanted. She always wanted to do something different.”

She thrived on a challenge.

She wanted, for example, to play on a T-ball team even after her Mom told her it was a different age group and she wouldn’t know any of the players.

“She said she’d make new friends,” her mother said, “and she did.”

When she played, everyone cheered as Sophia sailed from one base to the next.

Sophia was soft-hearted. She insisted on stopping if she saw an animal in need.

Horses were her favorite and her parents had ponies at a few of her birthday parties.

After she got sick, the owners of the ponies brought them to the Mohlers’ home so Sophia could enjoy them.

When she could no longer climb on the horses, she brushed and fed them.

“She just always tried to keep going,” her father said.

A community steps up

Throughout Sophia’s illness, family, friends and even strangers reached out with gifts, prayers and donations that allowed the Mohlers to focus on Sophia.

For the first time in 20-plus years, TatoNut’s doors closed so the family could care for Sophia while she received treatment at MD Anderson in Houston.

The Mohlers at first had a hard time accepting donations because they had always been the ones contributing to others.

In many cases, it was impossible to refuse.

Once at the airport on the family’s trip home from Texas, a woman with an envelope in her hand approached them in a restaurant, where Sophia sat in a wheelchair. She explained that her son-in-law had left her daughter after her cancer diagnosis.

The woman kept insisting the Mohlers take the envelope, a little something to help them, she said.

So, we go from the, ‘I’m sorry, it’s terminal,’ to shopping at Claire’s when we really just felt like throwing up.

Theresa Mohler

She wanted them to spend the money on something fun, not bills.

David Mohler said he didn’t open the envelope until he went to pay for a cab. He couldn’t believe it.

“It was $1,000,” he said. “We had never met her.”

Throughout Sophia’s illness, most people in the community never realized she was suffering from DIPG.

The Mohlers said they had gotten some advice about possibly keeping the specific diagnosis from their eldest daughter because she and her friends might go on the internet and find out the cancer is fatal.

“We just didn’t put everything out there,” David Mohler said.

In the last months of Sophia’s life, doctors wanted the Mohlers to bring in a hospital bed for Sophia, but they wouldn’t.

“She slept in between me and Theresa,” David Mohler said. “We had an oxygen tube going in there and a machine in the other room. We had ‘fire drills’ all the time because Sophia couldn’t control herself (and wet the bed).

“I was like, ‘OK, here we go, we are having a bed-changing episode,’” and then they went back to bed.

Sleeping in a blowup bed in the same room was Sophia’s older sister, the one Sophia had followed since the time she could crawl.

“We were all living in that room for months,” he said, “all the way to the end.”

Margaret Baker: 228-896-0538, @Margar45

Related stories from Biloxi Sun Herald

  Comments