Hastings community rallies behind 5-year-old cancer patient

You may have seen them around town lately: bright blue T-shirts with “Team John” across the front and “Mikko” and the number 21 on the back. Team John isn’t a sports team; it’s a support team, and one that’s astonished one Hastings family.

Toward the end of February, 5-year-old John “Mikko” Gegen, son of Jon and Shelly Gegen, had to go to the doctor. He had the classic strep throat symptoms, was diagnosed and treated. Just a few weeks later, the symptoms returned, only this time they were accompanied by night sweats. The added symptom concerned Shelly, she said, since she knew night sweats could indicate something worse.

The second doctor’s visit was the first of a long series. After taking an oral antibiotic for strep throat, he took another strep test. He still had night sweats and low-grade fevers, but the test came back negative. A week later doctors ran blood tests and a tuberculosis (TB) test. The TB test was negative, and the blood work didn’t show anything too concerning.

When the pain started in John’s leg, his doctor sent him to an oncology specialist. The onset of the pain was sudden. One day John was running around at his older brother’s lacrosse game, and the next he couldn’t walk on it at all, Shelly said.

In the first week of April, John was admitted to Children’s Hospital. At first they thought he might have leukemia, but a bone marrow test and CAT scan proved otherwise. It was neuroblastoma, a childhood cancer that develops from nerve tissue. The diagnosis was a shock.

“You never think that you’re going to be in that circumstance,” Shelly said.

John had a tumor sitting just above his kidney, and the neuroblastoma had also spread to his bone marrow. His first test results showed it had infiltrated his marrow to 90 percent.

“It was terrifying to get those results,” Shelly said.

Within a few days of diagnosis, John had started his treatment. Neuroblastoma is curable if the child’s body responds to treatment. John would have six rounds of chemotherapy, surgery, possibly radiation therapy, a stem cell transplant, transfusions and oral treatments. If all of that works and later tests show no evidence of disease, he’ll move into the monitoring stage, where he’ll be tested periodically for the rest of his life.

So far, John has finished three of six rounds of chemo, and his body has been responding. After just two rounds, his bone marrow test was down to 5 percent occurrence. Now there’s no evidence of the disease left except for the tumor. The Gegen family is hoping he’ll have surgery to remove the tumor sometime in early- to mid-July.

“He hasn’t had any bumps in the road,” Jon said.

An outpouring of support

On Saturday afternoon, a friend knocked on the Gegen door to drop off some food for the family. It was an unexpected house call, and not the first. Support has flooded in not only from friends and family, but from neighbors; classmates of the older boys, Jeffery and Michael; and even complete strangers.

The Team John T-shirt got started by Pete and Michelle Zak and Nine Eagles. More than 1,000 shirts have been sold, Jon said, and are being worn in Hastings, Lakeville, Eagan and southwest Minnesota.

“They’re all over the place,” Jon said.

There are blue and gold bracelets that say “Team John” on them. People offer to help get Jeffery and Michael to school and lacrosse practices. Jon’s and Shelly’s parents have stepped in to look after the home while Jon and Shelly are away at work or the hospital. The neighborhood collected money to help the Gegens pay medical bills. The school district provided the family with iPads so they could have contact between the hospital and home through Skype. Hastings Hockey Boosters and lacrosse clubs have helped. Well-wishers send cards with John’s favorite treats to the hospital when he’s in treatment.

“The hospital thought they were in the presence of a celebrity, there were so many cards and letters,” Shelly said.

Derek Stepan, one of John’s favorite professional hockey players, signed a jersey for John, and a hat came from the Minnesota Wild’s Mikko Koivu. John was nicknamed after Koivu by Michael and Jeffery while Shelly was still pregnant.

There’s even a website, ministicksformikko.wordpress.com, that has been keeping up with the Gegens’ story and lets people support the family by sending John mini hockey sticks. Some mini sticks have been sent from the east coast.

“We have no idea who’s behind it,” Shelly said.

“It’s been wonderful,” Jon said of all the support.

“They have just lifted us up,” Shelly said. “We are truly blessed. Good things come out of bad things.”

Struggling, but not alone

Once they overcame the shock of John’s diagnosis, the Gegen family faced a new set of challenges. Both Jon and Shelly work, and Jeffrey and Michael have school and sports events, so staying connected has been difficult. Shelly stays with her son whenever he’s at a hospital stay, keeping her away from the rest of her family for sometimes extended periods of time. John’s first treatment kept him in the hospital for 18 straight days.

While there, though, the Gegen’s have seen their story reflected on other faces.

“Every family on the floor felt the same way,” Shelly said. “We’re all in the same boat together.”

They’ve even recognized others from Hastings fighting their own battles.

“Our family is not unique and alone,” Shelly said.

For more about John’s story, go to www.caringbridge.org/visit/johngegen.

Team John bracelets are still being sold in four sizes for $10 each at Special Tees in Hastings. The bracelets are titanium athletic bracelets with the Raiders' blue and gold colors and #21 after Derek Stepan's NHL jersey number.

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