On the wall of the TatoNut doughnut shop in Ocean Springs, Miss., is the picture of a luminous young girl in a pink satin dance costume, hair pulled back in a bun with a slight smile and warm brown eyes. It was one of the last pictures taken when 7-year-old Sophia Mohler’s life was filled with dancing, horses, friends and 2nd grade.
Before the MRI. Before the tumor and the chemo. Before Make-A-Wish provided a family trip to Disney World, their last.
Life changes quickly, and an appointment to check on blurry vision produced scans that showed a mass at the end of Sophia’s brain stem.
“The wait was so long that day for the MRI that her sister, Kaitlyn, and I left and went back to work because I was getting farther behind,” says Sophia’ s father, David, co-owner/operator of TatoNut. “Your mind doesn’t even think about what could happen. The emergency room was packed, and we were more worried about getting sick than the scan.
“We went back to the shop, and Theresa called and said, ‘Get back here, they are about to airlift Sophia to Mobile.’”
Sophia wasn’t airlifted, but they met with a neurologist in the state capital of Jackson as soon as possible. “He said the tumor is terminal, but that word went over my head,” David says. “We walked out and Theresa said, ‘He said terminal.’ That is when I realized something was really wrong.”
The Mohlers went home and looked up diffuse intrinsic pontine glioma (DIPG), a brain tumor found in the brainstem that comes from the cells that surround, protect and support the nerve cells in the brain. The rare tumor is most common in elementary school-aged children. There is a 1-percent survival rate and most die within a year.
“We searched for science and advancements and thought we could beat it,” David says. “People reading the MRI said they were sorry, and we didn’t know what they were sorry for. We were going to fix it. Radiologists came to our house and told us we needed to find a specialist for this tumor.
” The tumor was surrounded by nerves in the back of the brain that control everything from walking to breathing, as well as the muscles that help with speech and eye movements. It pressed against the nerves and affected Sophia’s motor skills.
“Before we knew there was a problem, she was bumping into walls and had trouble chewing and swallowing,” David says. “We got onto her for playing with her food, but in hindsight, we understood.”
They cleaned out their savings to pay for the out-of-network appointment at MD Anderson Cancer Center in Houston. Treatment began immediately after the appointment, two weeks after the tumor was discovered. It happened so fast that they closed the door to the shop on Friday, leaving everything like they would return the next morning. They didn’t walk back into the downtown Ocean Springs shop for two months.
It was the first time TatoNut was closed in over 50 years. Originally named Spudnuts for doughnuts made from potato flour, the bakery was opened by David’ s father in 1960, and David and his six brothers worked there before and after school. David and Theresa met there when she became an employee. They have been married for 21 years and work together every day.
“We had to close the shop because we wanted to stay together with our daughter in Houston, “Theresa says. “Every day there was a decision about radiation or medicine. We didn’t want to make those decisions without the other one there.”
“Going through the sickness and death of your child is hard, and the divorce rate of people who lose a child is high,” David says. “People almost expect relationships to fall apart. It was as bad as it could be, and we were still taken care of. We took our child to the best doctor in the country for the tumor she had.
“We had to have faith that it would work itself out and it did.”
The community supported and cared for the family before they even knew what was needed. “People came to see us at the Ronald McDonald house every week,” Theresa says. “They brought letters and gifts from Sophia’s friends at school. It bothered us a little bit that people were taking care of us, and there were other people who didn’t’ get the same attention, so we tried to care for them.”
“We are in the service business and are self-sufficient and independent,” David says. “We are used to taking care of other people, but it took a while to accept people caring for us. We felt like we were a part of the community and knew our customers, but we never in our wildest dreams imagined that people would stop what they are doing and put us as a priority.”
The hardest part was telling Sophia what was happening to her body. “We had to tell her the truth because she could read cancer treatment signs when we walked in the door,” David says. “We told her everyone’s cancer is different and what happened to one child didn’t mean it would happen to her.”
“She trusted us and didn’t question,” he says.
“Your child has faith in you as a parent and is looking to you for answers and those were big questions. Not just, ‘Am I going to make the team?’ We never told her she was dying. She would look at other kids and say she wasn’t’ t going to look like that, but she ultimately did.”
During the two months in Houston, they looked for hope in the Caring Bridge stories of other kids with the same tumor, but everything said she had eight months to live.
“We had to hold on to hope,” David says of the support website. “I couldn’t’ t thinks about the other side.”
Sophia responded well to the chemo treatment, and her tumor shrank 45 percent. She returned home frail and bald, but her motor skills were back and she was eating normally. The family thought she was going to make it, but their doctor warned the tumor would go downhill, and that would be it.
“He said, ‘We could use miracles all day around here. Good luck with wanting a miracle.’”
The smaller miracle came with a trip to Disney World from Make-A-Wish. The Mohlers had been to the park many times before–they were actually there in July, two months before Sophia was diagnosed. Wish granters sat at the kitchen table and talked with Sophia about going to see “Dancing with the Stars,” Cake Boss,” and getting a dog. But she chose Disney.
The reveal was made in her school cafeteria. The mayor, a distant cousin of the Mohlers, declared it “Sophia Mohler Day,” and Sophia ran around the cafeteria with balloons and ate pizza that had “Sophia” and “Kaitlyn” spelled out in pepperoni.
The wish trip was in January and the Mohlers stayed in a villa at Give Kids the World, a 70-acre resort just for Wish Kids. The characters spend extra time with the kids, and an ice cream shop is always open so Sophia and all the other kids can have ice cream for breakfast.
“We had been away from home for 48 days,” Theresa says. “That trip gave us a chance to take a breath from the treatment and the hospital every day. She was still on chemo and needed labs drawn, but Make-A-Wish took care of that, too. They didn’t leave anything for us to worry about. They took care of everything you could think of.”
“Make-A-Wish makes a massive impact on people’s lives, the people who get the wishes and the ones who are involved,” David says. “It changes your perspective. The Disney employees’ radars are up for Make-A-Wish T-shirts and buttons, and the characters give more time at dinner and more hugs during parades. She realized this trip was extra special because of the way she was treated.”
The trip came when they needed hope and a time to be normal. “We needed to just take a breath and enjoy time together as a family,” Theresa says. “Her illness taught us to live for the day, and we needed some fun days. She dressed as Alice for the Mad Hatter Tea Party and got to meet Tinkerbell. She had never been able to meet Tinkerbell before.
“For Sophia, it was a chance to put everything aside and be normal one more time.”
“Life changed quickly between the two trips to Disney,” David says. “Pictures on my phone go from the girls wearing hats on the back of the Disney bus to in July to the Ronald McDonald House and the beginning of the treatment a few weeks later. Her hair started falling out and she wanted to send pictures to Kaitlyn and tell her she was having a bad hair day.”
After the Make-A-Wish trip, the tumor started growing again. The headaches returned and her body started changing and swelling from the steroids and drugs.
“We didn’t’ t acknowledge the change. We were focused on the inside and knew that Sophia was there, but it was overwhelming to know that other people looked at her like a freak.”
The last few months were overwhelming.
“There were things Kaitlyn wanted to do, but Sophia couldn’t’ t do them,” David says. “She said, ‘I am making everyone miserable.’ That shuts you down. We realize we were getting messed up. The last months we slept in the bedroom in our house and Sophia slept between us until the end. She was hooked up through her nose to a machine with a tank that was in the living room. We kept the door shut because it was so loud. “
“That was our world.”
Sophia never said she was ready to quit, and the Mohlers used that as a reason to keep going one more day. But one morning she didn’t want to get out of bed.
“We knew that was it,” David says. “She passed away from problems from an infection. She lived 53 weeks, she is in the 1 percent of survivors who live longer than a year. It was a wild time, and Make-A-Wish helped bring some calm to us.”
The Mohlers learned about service from the organizations that served them. At the Ronald McDonald house, volunteers took their plates and said, “It is a blessing to serve you.”
“I thought that was odd, but before this I didn’t realize what a blessing it was to serve someone, “Theresa says. “I thought it was my responsibility to have a business. I didn’t know how to accept help. By the time of our Make-A-Wish trip, accepting help felt more comfortable. Our radar is up for families who are going through this and just trying to get out of their house and go out to eat. We are helping the Ronald McDonald house and Make-A-Wish any way we can.”
Lynn Oldshue, The Southern Rambler