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Siblings

Cassie Bertwell is getting a kidney from her brother Connor Frohberg after a battle with lupus destroyed hers. 

Cassie and Connor Frohberg grew up doing what sisters and brothers do.

Cassie, six years older, bossed her kid brother around. He balked, and they bickered, their middle sibling, Melissa, often taking the role of peacemaker.

The Frohberg kids did other things, too: They played capture the flag and make-believe games with the neighborhood kids. They went to Disneyworld and Mount Rushmore and Chicago on summer vacations and spent hours playing Monopoly at home.

They went to Morley Elementary, Lux Middle School and East High and somewhere on the journey from teenager to 20-something, Cassie and Connor discovered they liked each other quite a bit. Brother and sister, it turned out, had much more in common than their younger selves realized.

“He’s one of my best friends, actually,” said Cassie, now 26.

Fast forward a few years: Through Cassie’s college graduation and wedding and the odd times when, for no apparent reason, her joints would swell and hurt. Through the pregnancy stick that came back with a joyous "plus" sign, a dream trip to Australia and the stark reality of a diagnosis that changed everything.

Little more than a year ago, Cassie -- whose last name is now Bertwell -- knew little about lupus, the disease that causes the body’s immune system to malfunction and begin attacking healthy tissue.

She had no idea that the disease from which 1.5 million Americans suffer was causing her pain, the hair loss, fatigue, rashes.

She had no idea, then, that the disease was attacking her kidneys, robbing them of their ability to filter waste out of her body.

And she had no clue that the annoying kid brother who’d grown into a really-quite-nice young adult would offer a chance for her to regain her life.

There really was no question, said Connor, now 20 and studying computer information technology at Southeast Community College. He loves his sister. And if Cassie needed a kidney, she could have one of his.

Over the past year, it became clear that she did.

* * *

Looking back, Cassie suspects she had lupus in high school, when her track and cross country career was marred by stiff and sore joints. She figured that was just part of competitive running.

But three years later, those stiff joints got so bad she landed in the hospital.

“I couldn’t move,” she said.

The doctors diagnosed her with a form of arthritis. Misdiagnosing lupus, she would learn later, is common.

But life was taking off and the joint pain -- for awhile anyway -- was a minor distraction from all the good stuff.

Top among those was the outcome of a blind date to Ribfest in 2009 with a guy who, some years later, sprinkled rose petals around a room, put on their song, got down on one knee and proposed.

On July 6, 2013, Cassie Frohberg married Damien Bertwell. They bought a house and a dog and acquired some cats. She got a job at Assurity, interviewing clients about their medical histories, and he got one as an IT guy at the Educational Service Unit in Beatrice.

Last year, they made a couple of decisions: to try to get pregnant and to plan a big trip before that happened. 

They found a great deal on Groupon and started planning a trip to Australia, but Cassie’s joint pain and swelling was getting worse.

One night Damien read an article about Selena Gomez in which she discussed being diagnosed with lupus.

“The symptoms matched exactly,” he said. “I said, ‘Go to the doctor and tell them you have lupus.’”

She did, and doctors ran a battery of tests. But the Bertwells left for Australia before they got the results. Of those tests, anyway.

Cassie also took a pregnancy test while they waited with their packed bags for a ride to the airport -- and the results were immediate.

She was pregnant.

They were shocked, thrilled and -- very shortly -- on a 21-hour plane ride to Sydney. They spent five days visiting the opera house and the zoo and the botanical gardens, watching whales and gazing at the Blue Mountains.

It was a wonderful trip, Cassie said, although her joints hurt and she struggled to walk.

When they got home, her doctor said her kidneys were failing and sent her to a nephrologist and rheumatologist. On Nov. 5, 2015, she got the diagnosis.

It didn’t seem so bad, at first.

“I wasn’t really scared,” she said. “But I should have been.”

She remembers clearly what her rheumatologist told her. Because it was true.

“She said, ‘This is very serious. Your lives are going to change forever.’”

* * *

Because she was pregnant, doctors had to modify how they treated the illness, giving her different drugs they hoped would reduce the symptoms, but two weeks later she was in the hospital.

Her body had retained 50 pounds of fluid, and nothing was working. It was life-threatening. They made a tough decision to try chemotherapy to try to slow down her immune system, despite dangers to the baby.

She started kidney dialysis, every day before work. It was grueling -- and about to get worse.

They monitored the baby closely, with regular ultrasounds. On March 3 -- six months into her pregnancy -- they lost him.

They named their son Lucas Henry, and they grieved -- and they kept going.

Cassie was now able to do a form of dialysis that made her less sick – and that she could do from home.

They hoped her kidneys would regain function, but by June she was on the donor list.

* * *

They used to joke about it, after doctors told Cassie her kidneys were failing.

They knew she and Connor had the same blood type, a requirement to be a live organ donor.

“You'll have to give me yours.”

Then it was real.

Her months on dialysis put her higher on the donor list, but she still made an appeal on Facebook because receiving a kidney from live donors improves the chances of success.

At least 12 people offered to donate, friends -- and some strangers.

Her aunt was tested. Her mom and Damien were both the wrong blood type, and her sister was planning to have a child. Her dad had the same blood type, but doctors said he was too old. Connor was a match, but doctors told Cassie an anonymous donor had similar genetic markers that made for a closer match.

So they waited, but heard nothing for weeks.

One night in October, Connor decided it had been long enough. The next morning, he called doctors and said he wanted to move ahead as a potential donor.

He underwent two months of tests before a phone call woke him up one morning.

He was a match. He texted his family as a group.

“I was at home with Damien and I was like, ‘Damien, look what Connor just sent us,’” Cassie said. “It was pretty great.”

Siblings are often the best donors, by far the most live transplants come from them. In a matter of weeks, the Frohberg siblings will join that statistic.

Their dad is in Germany on business and won’t be home for the surgery. Their mom, Melanie, an instrumental music teacher at Irving Middle School, will take time off to care for her son after surgery. Damien, like he has since the beginning, will take care of Cassie.

“They’ve each played a role,” she said.

But Connor’s role, well, it’s hard to express how grateful she is to her kid brother.

How do you say thanks for giving one of your organs? Give him all your cards when you lose at their favorite board game? Forever?

Cassie hopes talking about her illness will accomplish a few things.

She hopes to educate people about lupus, so maybe those who have symptoms will pursue a diagnosis earlier than she did. She hopes to encourage people to be organ donors.

And one other thing.

“Telling people how great my brother is.”

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Reach the writer at 402-473-7226 or mreist@journalstar.com.

On Twitter @LJSreist.

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Education reporter

Margaret Reist is a Lincoln native, the mom of three high school graduates now navigating college and an education junkie who covers students, teachers and policymakers inside and outside the K-12 classroom.

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