BOY’S FIGHT INSPIRES MANY

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By Audrey Posten

North Iowa Times Editor

 

Shaun Mohs is a 9-year-old boy from McGregor with an infectious laugh and as his mom, Misty Jones, describes, an old soul.

“He’s a grandpa,” she said with a loving smile. “He’s very sincere and wise beyond his years. He gets along with everyone.”

He’ll challenge anyone to a card game and enjoys creating art, swimming, fishing and playing sports. His favorite color is red. At school, spelling and math interest him most.

Shaun is also an inspirational rallying point for many in the local communities. For the second time in his young life, he is battling a brain tumor.

The first tumor was diagnosed in April 2009, when Shaun was 2.5 years old, said Misty. He was vomiting all the time, but trips back and forth to the doctor hadn’t yielded a cause. After Easter weekend, when Shaun woke up and couldn’t walk, a visit to a doctor finally found the tumor through a CT scan.

“It was an aggressive tumor, so we had to treat it aggressively,” Misty explained.

Surgery removed 90 percent of the tumor and Shaun also had a stem cell transplant. For every day from May through October of that year, he had treatments of high-dose chemotherapy. Shaun had to shower every four hours, she detailed, as the chemo was so intense it could seep through his skin and burn him.

Fortunately, the chemo killed the tumor, Misty said.

“It’s still there; it’s just dead,” she noted, adding that, in the proceeding years, doctors have routinely monitored the tumor to make sure it doesn’t grow.

Some of the aftereffects have been rough, though. Shaun’s eyesight and hearing were weakened. He also developed diabetes after the tumor messed with his pituitary gland and, thus, his ability to know if he’s hungry or thirsty. A shunt was needed to drain fluid from his brain.

Misty said receiving the diagnosis was a shock.

“It took a long time for me to come to terms,” she admitted, noting that her family has been an amazing source of support through it all. “Now, it’s become our normal.”

In January, during one of Shaun’s regular MRI check-ups, another tumor was found, this one much smaller than the first, Misty said. They hoped to do surgery to get a biopsy of the tumor, determining if it was slow- or fast-growing, but couldn’t get enough of it. Eventually, they determined it was slow-growing.

Treatment delayed

Shaun planned to start chemo last Wednesday at Mayo Clinic in Rochester, and continue treatment weekly for one year. However, Shaun’s grandfather, Joe Jones, contacted the North Iowa Times on Wednesday, sharing that, due to the privatization of Iowa Medicaid beginning April 1, Shaun could not start chemotherapy at Mayo Clinic that day, as anticipated. The three managed care companies that manage Iowa’s Medicaid program had been unable to negotiate contracts with Mayo.

Joe explained Shaun could have had one treatment at Mayo on Wednesday, but would then have to continue treatment elsewhere, likely in Iowa City. He stated the family has nothing against another hospital, but they feel comfortable at Mayo, where Shaun has doctored for seven years.

“We go to Rochester because it’s the best. Shaun needs to be seen there,” he said. “He knows all his doctors and he’s comfortable with them. Now, to go someplace else, it’s a risk.”

Currently, 560,000 Iowans are on Medicaid. Joe said he felt like families weren’t given enough warning of the changes.

Rep. Patti Ruff, of McGregor, fought for Shaun at the capitol last week, to show how privatization can disrupt care. She also addressed Medicaid in her weekly update, noting: “I have heard stories from constituents that will have lapse in care, having surgery cleared but the post op care will have to be scheduled with different providers, cancer treatments delayed, etc. With Mayo Healthcare not signing with any of the three MCOs is creating havoc for some in Northeast Iowa.

“For months, many Medicaid members have complained about the transition process, including poor communication with DHS and the private managed care organizations taking over Medicaid. In addition, not all providers have signed an agreement with the private managed care organizations. For example, the hospital or clinic may have signed with at least one MCO, but the doctors that work at the facility have not. As a result, members are fearful that they will not be able to see their established provider and will lose services as a result. As the change moves forward, there may still be issues including coverage of services and reimbursements for provided services.”

A public meeting on Medicaid privatization has been scheduled for Friday, April 15, at 2:30 p.m., at the Elkader City Hall.

On Sunday, Mayo Clinic said the Iowa Medicaid managed care companies agreed to grant an exception for Shaun, allowing Iowa Medicaid to cover his treatments.

Support is strong

Since the second tumor was found in January, Misty said she’s received an outpouring of support. Her co-workers at Peoples State Bank, where she has worked for four years, sold neon green “Beat the Odds” T-shirts and surprised Misty by wearing them one day. A post on Facebook about the event was liked by over 200 people and shared 56 times.

“I have a lot of good friends there. We’re close and care about each other and our families,” she said. “It’s nice to know that you have their support.”

Misty said the bank is also flexible with her schedule.

In addition, some of Misty’s friends outside work sold “Shaun Strong” T-shirts throughout the MFL MarMac community.

Shaun appreciates the support, too. During the interview, he noted that the teachers at MFL MarMac Elementary, where he is in third grade, recently wore the shirts, making him laugh.

Misty said, if Shaun isn’t feeling well enough to make it to school after chemo, his teacher offered to stop at their home and help with his coursework.

Although the tumors and treatment have taken their toll, and Shaun doesn’t always grasp what’s going on, Misty said he remains in good spirits, giggling and having a good time. The key is to stay optimistic, she said.

“It’s inspiring to see him go through it and be positive. He gets through it and doesn’t let it take over,” she stated. “It shows you how strong someone can be at such a young age.”

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