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Graduation the 'holy grail' for Simeon Smith

BY CODY GOODWIN | FEBRUARY 03, 2015 5:00 AM

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The good news came eight days before Christmas — “December 17,” Kari Smith says with a smile, because these are the kinds of things mothers always remember. That day, an early holiday gift if there ever was one, the doctor first talked to Smith and her son, Simeon, about “the rest of his life.”

“Up to that point, it was ‘at your next appointment’ or ‘when you come in in six months,’ ” she continues. “I wouldn’t even let myself think about the rest of his life until that appointment. It didn’t even hit me until I came back home and told someone else about it.

“Then, it just hit me — like, wow. The rest of his life. We’ve hit that. We’ve hit the five-year mark. This is the holy grail.”

• • •

Simeon was walking to lunch when he got called to the office. He was in kindergarten then, just 5 years old, and he was mad because he wouldn’t get to eat.

“Our pediatrician knew but didn’t tell us,” Smith said. ”He’s just like, ‘Get to the speciality clinic. Something is going on.’ And we knew he’d have to have testing, so he was like, ‘Don’t let him eat.’ ”

Earlier in the school year, Simeon felt a pain in his legs, which he’d relieve by putting something hot or cold on it. But one night, the pain did not go away, resulting in a trip to the doctor.

The day he missed lunch, Simeon was diagnosed with two types of leukemia: acute myeloid leukemia and acute lymphocytic leukemia, both cancers of the blood. To be diagnosed with both, at the same time, is rare, but not unheard of, Smith said.

“When he was originally diagnosed, there wasn’t a really big pool for them to draw from and say he’s cured or no he’s not,” father Johann Smith said. “He was like the fifth person diagnosed at the university [with both].”

• • •

Treatments involved heavy doses of chemo, which brought even more challenges. Simeon missed “a year and a half of school,” his mother said, and he fell behind the rest of his classmates. There was a full year where he had no physical growth. The Smiths made countless trips to the hospital — sometimes on a weekly basis.

“I remember the first year he went to camp,” Johann Smith said. “We dropped him off, drove to Des Moines for dinner, and as soon as we sat down to eat, we got a phone call from camp saying he spiked a fever. He had an infection. So we turned around, picked him up, and took him to the hospital.”

The chemo treatments ended five years ago, and in the time since, Simeon’s hair has returned, and he looks like every other 13-year-old. He doesn’t have to wear shoes with thick soles anymore when he goes outside; he can finally swim in lakes and oceans again — and, perhaps most importantly, he’s going to school every day.

“When he finished chemo, we didn’t throw a party,” Kari Smith said. “We were scared, you know, because it could come back. We didn’t do anything.”

Come the night of this year’s Big Event, though, Simeon will have his party, complete with a cap and gown and a strut across the stage in the IMU Main Ballroom.

• • •

At last year’s Dance Marathon, Simeon’s fourth without chemo treatments, he watched as those who hit the five-year mark walked across the stage during the graduation ceremony. In that moment, he let himself think big.

“It is going to be different,” Simeon said. “Every year I’ve gone, I’ve watched the graduating people walk up on stage, but this year, I get to be part of that.

“It’s good every year, no matter if it’s your first year or your last year, but graduating is going to be a bigger deal.”

The idea of Simeon graduating Dance Marathon spawns memories of the entire family’s experience with the Big Event. The Smiths often invited their family reps over for dinner to get to know them further.

For Simeon, Dance Marathon allowed him to find others who understood, personally, what he was going through. Those talks helped a lot, he says.

“Dance Marathon helped me the whole way,” Simeon said. “I like going to the events because I’m able to see all my friends who have similar things as me. It’s easier to talk with them because they’ve had similar things happen to them.”

Kari Smith said, “They become your family.”

• • •

These days, Simeon only goes to the doctor once a year for a checkup, a physical, and to get his blood looked at. He gets a heart exam every two years. In five, he’ll get his liver and kidneys checked. He’s back to playing outside more often with his friends — sometimes without shoes — and competing in cross-country and track and field.

Even more, when he tells strangers he had leukemia, they produce a funny look and ask a question his mother loves hearing.

“They just look at him and say, ‘Really?’ ” Kari said. “He doesn’t look any different from any other kid now.”

And that’s something the whole family looks forward to saying for the rest of his life.


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