Residents organizing benefit for 4-year-old-boy battling cancer

Once again there is an opportunity to pull together as a community to help someone else with medical expenses.

This time it’s a little four-year-old guy whose life was interrupted by the sudden discovery of a cancer requiring the removal of a kidney, radiation, chemotherapy and, more recently, bouts with high fevers resulting in more hospitalizations.

Amy Tibben, mother of Kywin, said his fever was still running up to 103 degrees and the doctors ordered a CT scan and more tests to determine the cause of the fever.

The fundraiser will begin at 5 p.m. Sunday, July 12, in the Stanton Community Room. Hamburgers, hotdogs, brats, baked beans, chips, desserts and beverage will be served prior to the 7 p.m. auction.

Kywin is the son of Jeremy and Amy Tibben of Stanton. His home in Stanton is surrounded by loving relatives that stretches back to his great-grandmother.

Love for Kywin was evident the night he was rushed to Children’s Hospital in Omaha. Several family members got to the hospital about the time the ambulance pulled into Children’s during the early morning hours of May 3.

Kywin’s story all started on the night of May 1, when he had a stomachache in the middle of the night. His mother called the emergency room in Red Oak to talk to the doctor, who thought Kywin was probably just constipated.

On Saturday, Kywin seemed fine.

That night, at the Adams County auto races watching his dad, Kywin seemed tired. He started having stomach pains again.

Amy said, “It’s hard to decide what to do. You don’t want to be overly protective, but you know something is wrong.”

She decided she and Jeremy should ask the EMT crew at the race, which they did.

“He figured Kywin had appendicitis and he said to take him to the Red Oak hospital and tell them what he’d thought it was,” Amy said.

A doctor from Omaha was serving in the emergency room. He ordered a CT scan, which he sent on to Children’s Hospital. Coming back to consult with Kywin’s parents, he told them the situation was more complicated than anticipated.

No parent wants to hear a doctor say their child has cancer. Even worse, the Tibbens heard the doctor say he believed Kywin had a Wilms tumor and needed to be transported to Omaha immediately.

Amy said they began calling family members even though it was about 1:30 a.m. A brother in Pennsylvania wished he could be with them, too, but most others were ready to head for Omaha.

“It was hard to tell family members,” Amy said. She just said “Wilms tumor” to some, but a nurse gave her and Jeremy a brief synopsis of what a Wilms tumor was before they left with the ambulance for Omaha.

Once in Children’s Hospital, they met with a team of specialists who confirmed the diagnosis. The mass had totally consumed his right kidney.

On May 4, the three-pound tumor and lymph nodes were removed. During surgery, they found the mass had ruptured. During removal, the mass spilled into the body cavity, making the prognosis more severe and requiring seven days of radiation and up to 28 weeks of chemotherapy.

As of June 11, Kywin finished radiation treatments and proudly, now, tells people he “rang the bell.” Individuals completing radiation are encouraged to ring a bell so others hear treatments have finished.

He has finished at least five weeks of chemo, but recently had low white blood cell counts, trouble with the port for chemo and high fevers requiring hospitalization back at Children’s Hospital in Omaha.

“Normally people say how chemo really wears a person down. It doesn’t do that for him. In fact, it almost does the opposite,” Amy said. “It’s just lately he’s slowed down. He had his first blood transfusion last Monday.”

Kywin has “A positive” blood type. With another 20 or more weeks of chemo ahead, Tibbens think they and at least one other family member plan to become donors. Others are invited to donate, too.

Though in some respects, the cancer diagnosis has made life a bit of a nightmare, Kywin gets them through it with his winning smile and big brown eyes.

According to Kywin, to remove the “owie,” the doctor would give him a big scratch that would get better everyday. In his mind, it’s as simple as that. Most days have been good and he’s played then like a normal four-year-old boy.

His big sister, Kami, has accompanied him for chemo. Her parents want her included in what’s happening to her brother.

In May Kami’s first grade classmates learned about Kywin’s operation and cancer from a booklet Kami and her family created. The class created cards for Kywin as did younger children who often spent days with Kywin at the Stanton Child Resource Center also created cards. Tibbens plan to have all those cards on display at the fundraiser.

“We are so proud of Kami, too, the way she’s handling all of this,” Amy said. “She’s proud of the fact she didn’t stare at other children getting chemo. She makes me so proud. We’re all learning new things.”

Denise Goddard and her family provide supervision and care for Kywin and Kami when Jeremy and Amy are working. It’s too risky to have Kywin around to other children right now.

Goddard spoke for the family when she said, “They truly are thankful for everyone’s thoughts, prayers and donations. The bills, even though they have insurance, will be astronomical, due to the percent they have to pay, their loss of work, mileage and lots of other miscellaneous items.”

Goddard urged anyone interested in helping Kywin and his family to donate or come to the benefit auction. She encourages people to meet Kywin on July 12 and hear more about his journey.

To donate items, Goddard’s phone number is 829-2458, and Dawn and Tom Weis will take calls at 370-8880.

To encourage the family and follow Kywin’s progress, log on to www.caringbridge.org/visit/kywinmarvingtibben.