By Krystal Smalley
ksmalley@wbcowqel.com
They say it takes a village to raise a child; sometimes it takes a community to care for one of its own.
After a few years in Arizona, Lance and Maria Winemiller finally decided it was time to return home to the Bucyrus area. The Winemillers had moved to Arizona in a few years ago not only for the couple to spend more time with Maria’s family but also because of the climate. Maria had Hashimoto’s disease, an inflammation of the thyroid gland, and doctors said it was better for her to stay in a climate like Arizona.
During their time in Arizona, Lance rarely returned to Bucyrus while Maria made more trips as she tried to balance her business, Photos by Maria, in both states. The constant travel played havoc with Maria’s body, making her sick again and again. Lance was always by her side taking care of her.
“It started getting to the point where I just couldn’t do it anymore (travel back and forth),” Maria said. “Being sick all the time and being on a plane, you get sick a lot.”
It was time to make a change. They spent three years in Arizona before deciding to move back to Ohio permanently to spend more time with their grandkids and less time on a plane. Lance and Maria returned to Ohio in August of 2013.
During their 24 years of marriage, Lance hardly ever got sick. That soon changed.
Lance began showing signs of sickness when they started preparing for the move back to Ohio. They didn’t know what caused it but had suspicions that a steroid inhaler may have led to the breakouts in Lance’s mouth.
Though Lance went to a doctor and was prescribed medicine for the sores, it didn’t work. During that time, Lance had been driving back and forth from Arizona and Ohio as they completed the move, visiting doctors whenever he had the chance. They thought he was just tired from the moving process.
“The doctors we have seen . . . no one knew what he had. They all treated it as something different,” Maria said.
A week later, Lance lost his voice. He couldn’t eat or drink and continued to lose weight. He went from 247 pounds to 137 pounds since last summer.
When they went back to see the doctor, Maria said the doctor was “dumbfounded” by Lance’s symptoms. The doctor said it was best to send Lance to The Ohio State University Wexner Medical Center. He was admitted to the emergency room at OSU on Sept. 20. Specialists were in and out of Lance’s hospital room. Though they knew he had some type of rare disease, they didn’t know which one.
“It was really scary,” Maria admitted. “We were still kind of in shock because they still really didn’t know what he had yet. But they knew he had something; we were just trying to figure out what it was.”
A week later, after multiple rounds of blood tests and biopsies, doctor’s found a mass in the groin area. It wasn’t until that following Friday that they finally pinpointed what Lance had.
The diagnosis and the fight to live
Lance had been diagnosed with Castleman’s disease and Paraneoplastic pemphigus. Lance’s antibodies were attacking his body. According to cancer.org, Castleman’s disease, though not officially a type of cancer, is a disease of the lymph nodes and other related tissues. The multicentric form of Castleman’s disease does act like cancer of the lymph nodes and many people who suffer from this disease may develop lymphoma. Castleman’s disease can be treated with chemotherapy or radiation therapy. The disease was first described by Dr. Benjamin Castleman in 1956.
“With all of this going on, none of the doctors know,” Maria said. “They don’t know if he will come out of this, they don’t if he will get better, go downhill. They don’t know.”
Chemotherapy didn’t work for Lance. He was getting worse.
When the doctors took a lymph node out of Lance’s groin area in order to try to treat it, his antibodies should have known to stop attacking the body. They didn’t and Lance’s situation didn’t improve.
Lance was admitted to ICU after doctor’s discovered during surgery that he had a blood clot from his hip to his calf. Maria said she had been watching an Ohio State home game with Lance in the hospital, a little thing she recalled just right before everything seemed to go from bad to worse.
“He was doing good. I thought he was doing good,” Maria said.
Lance’s mom was supposed to be there the next day so Maria left at midnight. His mom texted Maria and told her to get back to the hospital right away. Maria had just returned to Bucyrus when she heard the news. Lance had stopped breathing and Maria’s mother-in-law said something that Maria didn’t expect right then: “We almost lost him.”
That was Nov. 24.
Maria returned to OSU with her son Dustin. When she arrived, the doctors felt that the blood clot may have gone into his lungs. They asked Maria if they could put Lance in a medically-induced coma because he was unable to breathe on his own. Lance had contracted a lung infection.
Three days later, they started to bring him out of the coma.
“We didn’t expect him to live that long,” Maria said as she stood in her sunny country kitchen nearly three months after Lance was taken into ICU. She leaned against her island bar, bright purple flowers gracing the windowsill behind her. The sun was weakly shining through the clouds and snow blanketed the ground. Her other son, Josh, was in the living room watching the U.S.A. versus Canada women’s hockey final.
Tears quietly rolled down her face as she took herself back to those harrowing moments. She took a moment before continuing in a tear-roughened voice.
“It was just really hard. I just sat there in that chair the whole night. Watching him. Doctors in and out. Machines going off because they were trying to make sure everything in him was balanced.”
Maria took a deep breath to calm herself but as she continued, her control slipped. “We didn’t think he was going to make it. We didn’t. The doctors kept saying to prepare. And I wasn’t ready for it.”
The Winemiller family gathered around Lance. The doctors told them to prepare and to discuss what they wanted to do.
Lance was fighting. He started to wake up and could hear his family around him but he was still fighting the lung infection. The doctors once again told them to prepare.
“I called the doctor Dr. Doom,” Maria said with a small smile. “Whenever he comes to see you, it’s not good news.”
Lance had caught another infection and he was taken into isolation. Dr. Doom told them that, with all the infections Lance’s body was fighting, to once again to prepare. They didn’t expect him to live.
“But he did,” Maria said proudly. “He still was fighting and he got rid of that one infection.”
Lance stayed in special housing near the hospital after overcoming the infections. He was later moved in to Heartland of Bucyrus on Jan. 16. Lance left the nursing home on Feb. 7.
Fighting for healthcare
Now, Maria and Lance are fighting another battle. This one, though no less insidious, is just as costly.
When Lance was released from the hospital, his hospital bills totaled over $1 million. Without healthcare, Medicaid or disability coming in, the Winemiller’s are now fighting to pay their bills. Maria has had to sell things to help pay the bills, including her photography equipment.
“If I have to sell stuff to keep it going for him, I have to do it,” Maria said firmly. “I’m going to do everything I can for him.”
She has tried to pay the bills by shooting high schools games here and there but she hasn’t been able to get back to photography like she once had.
Maria tried applying for Obamacare but that was during the time when the website rarely worked properly. She could hardly get through the application process. When she was finally able to sign up, Lance was denied.
“They said preexisting was not supposed to be denied,” Maria said with a hint of anger in her voice. “That was the whole Obamacare thing. To help people who have not been able to get healthcare before. He was denied.”
They did, however, accept Maria, who does have a preexisting condition.
“I argued with them. It was a mess,” Maria said.
She called the hotline but they couldn’t explain to her why he was denied either. They told her to contact Crawford County. When she did that, Maria was told it was because Lance had been in a nursing home and they considered that as a place of residence.
“It’s not right at all. Whether you’re in a nursing home or not, he wasn’t there to live. That wasn’t his place of residency,” Maria said.
“I’m angry. It’s not easy to get healthcare and it’s not right that you’re denied when you have preexisting (conditions). It’s not fair,” said Maria. “There’s loopholes and nobody knows about the loopholes and one of them was because he was in a nursing home.”
Lance is still battling with the lung infection. He has to take medication for it every twelve hours for at least six months. That medication cost $900 a month. Luckily, Maria found out that they qualified to get the medication for free for a year.
“That medication was killing us,” Maria said. “All the stuff is killing us. To go and get that, to be fighting for healthcare and everything to get help. That medication is costly. Some of the other ones cost but nothing like that.”
Maria has found help from their families and the community. A fund was created by Maria’s sister for Lance on gofundme.com. The fundraiser is mainly to help the Winemiller’s pay hospital bills and any type of medical care until they can get healthcare.
Maria said she has also seen an outcry of support from the school communities. Though most don’t know her husband personally, Maria had been around the teams and families long enough that it didn’t matter if they didn’t know Lance; they simply wanted to help a family beloved by the community.
Lance refuses to talk about the time when he was in a coma. Maria said he feels like he’s not getting better even though she can see the progress he’s made.
Family members have been staying with Lance and Maria to help with Lance’s care. Their sons, Josh and Dustin, have also helped out along the way.
Maria is now Lance’s caretaker. Though lacking any kind of medical or nursing background, Maria learned how to take care of her husband by watching the nurses at OSU and those at the nursing home.
“It came down to I can’t afford to pay for nursing care. We depleted basically our savings to take care of him,” Maria said.
Maria gets up early, gathers his pills, and prepares his meals into liquid form. Neither food nor drink has gone into Lance’s mouth for nearly six months due to the sores, which he says feel like deep paper cuts. Maria said he is in pain all the time.
“I’m his nurse,” Maria said. “I never thought I could actually take care of someone like that but if you love someone you’re going to do it. And I’m doing it.”
Though Maria admitted she was scared at first, she has since overcome the fear of not being able to care properly for her spouse. “It’s not all about me anymore. It’s all about him. He always took care of me, now it’s my turn to take care of him.
“I keep telling him we’re going to grow old together so you have to fight—fight this,” Maria said.
Unfortunately, Lance has since been admitted back into OSU. Maria’s latest update on Lance’s gofundme.com page says that he could return home in a few days.
To donate to the fund, visit http://www.gofundme.com/6w528g.