Kenesaw student survives brain cancer, has positive attitude

Kenesaw student survives brain cancer, has positive attitude

Wednesday, November 22, 2017

By Kelli Rollin | Updated 

HOLSTEIN — Steak isn’t on the menu this Thanksgiving for Izabella Voelker and her family, but after she conquered a 5 percent chance of surviving, it was the first thing she wanted.

Bella was diagnosed with pediatric brain cancer, pineoblastoma, on May 25, 2016. After she returned from Disney World on a family trip with her dad, she noticed “horrendous elbow pain.”

“The kind that would wake you up in the middle of the night screaming,” said Bella, who is an eighth-grader at Kenesaw Public Schools.

The diagnosis

Bella returned on a Monday and noticed the pain on Tuesday.

“Within a week, they were taking out a brain tumor,” said Bella’s mom, Miki Eckhardt.

Bella’s older sister wondered what to do for Bella’s pain while at their dad’s. Miki suggested a pain reliever, but it didn’t help. The next day, Bella went to the doctor where she was diagnosed with a sinus infection.

The severe elbow pain was still there, but no one knew how serious it would end up being. Miki would see Bella on Friday, so she said to take warm baths to see if the pain would go away.

“Saturday, she was in so much pain we rushed her to the ER,” Miki said.

Doctors ran tests, none of them coming up with anything. On Monday night, Miki realized something was really off. Bella was getting numbness in her arms and part of her face was starting to tingle. Miki started to do research.

“The only thing I could find with elbow pain was traumatic brain injury,” Miki said, noting that Bella said she didn’t hit her head.

They followed up with Bella’s pediatrician in Hastings on Tuesday. Miki said after a light was shined in Bella’s eyes, they started to bulge. The doctor immediately sent Bella in for a CAT scan.

“There was a mass in the center of her brain that was causing all of the spinal fluid to build up in her brain,” Miki said.

Bella started to feel sick and show the usual symptoms for the cancer. She then had to have surgery to drain the spinal fluid in Omaha. She had a biopsy done and was diagnosed with pineoblastoma, which is aggressive and rare. Miki and her husband, Craig, said everything happened fast.

The risky surgery

“We got lucky with the elbow pain,” Craig said.

Miki said when your kid feels achy, you don’t first think that it could be cancer and that you could lose your child within a matter of days.

“If it would’ve been a headache and stomach pain, I would’ve lost her,” Miki said. She said it was good that the elbow pain ended up finally alerting her.

The doctors went in to remove the tumor, which was in the center of six vital blood vessels with the consistency of tissue paper. If they nicked one, Bella was done for. Doctors warned Miki that Bella could come out of surgery deaf, with vision difficulties, or could be in a coma.

Oh, and Bella had a 5 percent chance of surviving the surgery, which ended up lasting about eight hours.

“But no big deal, it was all fine,” Bella said, jokingly. “It was all in my head.”

Miki said Bella was also told that she couldn’t have any reaction, such as crying, because that would put more pressure and build up the spinal fluid. Any reaction like that could kill her.

Her tumor was spired everywhere.

“By the time they did the biopsy, it was the size of a dime. When they did the surgery it was the size of a quarter,” Miki said.

Even at 12, Bella was very informed and aware of what was happening to her.

“I had a lot of tough decisions to make,” she said.

Before going into the eight-hour surgery, Bella really had to face the possibility of death. She asked her mom to leave the room for 15 minutes while she planned her own funeral.

Within the last few years, Bella has had about 12 family members die, many from cancer. She was aware of what weight the word “cancer” held.

“I was prepared (to die),” Bella said. “The only thing I was scared about was what would happen to my family if I did (die).”

But Bella can hear just fine, she didn’t go into a coma and she’s still alive. She struggled with minor blurry vision, which improved with time. She is recovering from that and treatments.

Homework that usually would’ve taken Bella a half hour to do now takes multiple hours.

“She can do everything but cross her eyes, and she couldn’t do that before,” Miki said.

After her surgery, her first request was to eat steak. Craig said considering what she’d gone through, he’d let Bella have anything she wanted. That night, she ate filet mignon.

Positive and humorous attitude

When Bella was in the hospital, volunteers came in and asked if she needed anything.

They didn’t know what they were getting into, obviously.

“I wanted them to dance!” Bella said.

The jokester that she is, she seemed to brighten others’ days by the unique request.

She told of a time a resident came in her room to check on her. He asked Bella to stick her tongue straight out to make sure she didn’t have a stroke. As this was a routine thing, Bella decided to switch things up. She stuck out her tongue, but to the side.

He asked her to stick out her tongue again, and again, she stuck it out to the side.

The resident rushed toward the door, but stopped when he heard Bella giggling.

“I just remember he got so mad at me,” Bella said. “He said, ‘Bella, you can’t do that!’”

Craig said he remembers going into a restaurant and Bella meeting a middle-age woman who had just found out she had breast cancer. The woman asked Bella a lot of questions, including about losing her hair.

Craig said it was amazing to see Bella, a young adult, consoling the woman.

Proton treatment

Bella and her family made many tough decisions, one of them being choosing to go to San Diego so Bella could get proton radiation treatment. The type of radiation is more of a spot treatment than gamma radiation, which affects the whole body. Bella and her family decided it would be best and would affect Bella the least down the road. Nebraska doesn’t have a facility that offers proton radiation, so Bella had to go to San Diego for two months.

While there, she became close friends with older men there as prostate cancer patients. They bonded in the waiting room, and they loved Bella’s personality. The feeling was mutual.

Since she didn’t want to be sedated for 30 days in a row, Bella proved to the doctors that she could stay still during treatments. She wore a special mask and was bolted to the table. At 12 years old, she stayed still for more than an hour while she got her radiation treatments.

While in San Diego, Bella got to go to Sea World thanks to local people who bought her Go San Diego passes. Orcas are Bella’s favorite, so it offered her an escape.

“It gave her a chance to relax after treatments,” Miki said of Sea World.

She became close with all the trainers and a special someone named Jack Hanna.

“They became an extended family for us,” Miki said. “We’ve just had so many amazing people step into our lives.”

Bella was later offered an opportunity to study orcas in Washington state and has an offer on the table for an internship doing research.

A community gathers together

Craig said he was amazed at how the community was so willing to help them out through the whole process. Finances and bills are the furthest thing from your mind when your child is in a life or death situation, Miki said. But without the community and the Omaha nonprofit Angels Among Us, they would’ve lost their home. Angels Among Us helped them pay their house payment for 16 months.

“Without this organization, we would have been unable to make our house payments and would have not only had to worry about our daughter’s treatment, but also about maintaining our largest bill throughout this difficult time,” Miki said.

Craig said many local churches and community members pitched in for their expenses. The school even helped raise money for Bella.

“The entire community came together,” Craig said. “We have such a gratitude to the entire area here.”

Recovery and awareness

Bella is back in school at Kenesaw after taking a year off. She still had work to do while going through treatments during the 2016-2017 school year. However, despite not being in school for a year, Bella tested as a second-semester eighth-grader. She’s right back where she left off, if not better than that.

She still struggles with some short-term memory loss and is often tired, as her immune system isn’t what it was. She has to learn in a different way than she used to. Miki said they were told it takes up to two years to get to normal after the burn damage from radiation.

Miki said everything with Bella’s situation seemed to fall into place. The surgeon who operated on Bella was one out of 11 in the world who was qualified to do the surgery, and he just happened to be in Nebraska.

“God just took care of us from the beginning to the end,” Miki said.

“Her outlook on life has changed a lot,” she said of Bella.

In a few weeks, Bella and her family will fly to South Africa for her Make-A-Wish, where they will get to experience exotic animals up close and go ziplining. She plans to get going again with her jewelry business, SIAE, which she owns with her sisters. Bella also plays the flute and violin and loves to sing and draw. While in the hospital, Lindsey Stirling, a well-known violinist and one of Bella’s favorites, helped get her through.

Miki said they plan on having a good time this Thanksgiving, as they weren’t able to enjoy it last year with family. The traditional turkey is on the menu.

“The fact that we’re able to celebrate the holidays together is a big deal,” she said.

Bella is now a part of Team Jack, which helps fund research for pediatric brain cancer. She has also done a few speaking engagements to share her story and spread awareness.

She said it’s important to inform people of pediatric brain cancer, especially coming from her firsthand perspective. Many times when she hears stories of kids having cancer, the actual kids don’t say much because the parents speak for them.

“I think it’s important that the kids say something,” Bella said.

If one thing sums up her journey thus far, it’s her positive, thankful attitude.

“You have to stay positive through it, because if not, you’re not going to have a good life,” Bella said.

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