HOLSTEIN — Proton radiation therapy and whale love have given brain cancer patient Izabella “Bella” Phoenix Voelker, 12, of Holstein a new lease on life.
Diagnosed with a pineoblastoma tumor in the middle of her brain in May, the Kenesaw Public Schools seventh-grader was given a less-than-fighting chance of survival by doctors as she readied for her first of two surgeries at Children’s Hospital in Omaha.
So grim, in fact, was her prognosis, that she put to paper every detail of her own funeral and prepared a will, just in case.
Provided she did survive the two surgeries, there would still be a lengthy list of possible complications afterward, including brain bleeding, stroke, total loss of hearing, double vision, and other difficulties.
She would likely require a blood transfusion and would almost surely fall into a coma state for 1-5 days post surgery.
On May 31, doctors performed an eight-hour surgery to remove as much of the tumor as was possible.
Remarkably, she came through the procedure with flying colors. No coma. No hearing loss. No blood transfusion.
And while she initially struggled with blurry vision, impaired balance and light-sound sensitivity, even these side effects have since become manageable.
Her next hurdle required a trip to San Diego for proton beam therapy at Scripps Proton Therapy Center at Rady Children’s Hospital-San Diego, a precise form of radiation treatment that minimizes secondary radiation exposure to healthy tissues.
Her care included eight weeks of concentrated treatments to eradicate the cancer cells that could not be removed during surgery.
Accompanied by her mother, Miki, and stepfather, Craig Eckhardt, she flew to San Diego to begin the 30-treatment regimen in late July.
Funded largely by the generosity of donations from classmates, church groups and individuals in Kenesaw, Prosser, Juniata and Hastings, the family’s trip included several sightseeing side trips made between treatments. Izabella’s favorite: Sea World. The sea life amusement park became a refuge from her grating treatment schedule.
“We had a good time out there,” she said. “It’s beautiful. I met some pretty awesome people out there.”
Taken under the wing of Sea World staff, she was given special access to whale training sessions and other behind-the-scenes activities.
Those privileges included feeding the orcas and seeing how they were cared for on a daily basis. The experience was life-changing, she said.
“I would really like to become an orca trainer,” she said. “It was very special to me. If I had a cruddy day at treatment, we’d all go to Sea World and just kind of relax and have some nice down time there.”
The highly concentrated radiation treatments were difficult to stomach. Essentially bolted to a table to ensure absolute immobility, the high doses of radiation administered were uncomfortable and draining. Perhaps her least favorite aspect of treatment was wearing a plastic mask to keep her head perfectly still during treatment.
“That was the hardest part of it,” she said. “The mask had clips on it and it felt like I was bolted down to the table.
“I could have gone under sedation but I refused. That would have meant going under 30 different times, and I don’t like how it feels coming out of that.”
Dr. Andrew Chang, radiation oncologist at Scripps Proton Therapy Center in San Diego, is a longtime advocate of proton radiation treatment.
His 15-plus years of work in proton therapy include time spent working in the very first treatment center in the world at Loma Linda University in the late 1990s.
“If you think about traditional X-ray radiation, it’s like a shot that hits everything in the area,” Chang said. “Proton radiation is like a target rifle. It allows you to target where you want to give the radiation.
“In a case like Izabella’s, we’re able to avoid radiation exposure to her heart, intestines and developing breast tissue, which is always a concern in young women. It’s just more precise, with less risk of side effects.”
He believes her positive attitude and outlook during treatment sessions was instrumental in helping her to achieve what to this point appears to be optimum results.
“Having a positive experience during treatment is helpful for the mental health of a patient,” he said. “With many patients who receive proton radiation, we encourage them to continue to do as many activities as they can to help maintain a positive outlook.”
Moving on from proton radiation treatment, she is slated to begin several rounds of intense chemotherapy treatments in the coming days at Children’s Hospital in Omaha.
Though her chances of survival have increased substantially to this point, the upcoming treatments still carry potential risks, including the potential loss of fertility.
For now, she’ll focus solely on getting through what she anticipates will be more of the same discomfort she endured during proton therapy treatments.
“I’m a bit scared of the side effects of chemo, but I have a feeling that once I start it’ll be over before I know it,” she said. “This has been my life throughout the summer, so I haven’t really had a chance to think about much else. It would be nice to be done with all of this.
“I’ve learned that if you just keep a positive attitude through it all that there’s a better chance of you being OK than if you don’t. If this would have been anyone else in my family, I don’t think they’d’ be doing as well as I am.
“I’m a fighter. Has it been hard? Yes. But everyone — my family, friends, doctors — has been so supportive. And it’s nice to have everyone on my side.”
She maintains a strong belief in God, looking to him constantly when things seem most challenging.
“Sometimes I talk to him about how I’m feeling and ask him if everything is going to be all right,” she said. “So far, everything seems to keep being all right.”
A Go Fund Me account has been set up at gofundme.com/goteamphoenix to help the family raise money to offset Izabella’s ongoing medical expenses. Miki is currently unemployed after exhausting her sick leave where she worked.
Craig continues to work at a local bar but is unsure if he still has a job after missing multiple shifts to accompany Izabella during treatment.
Both of them marvel at how their daughter continues to defy odds in her battle with cancer. Both say she has been there for them and her three sisters during what has been a trying ordeal for the entire family.
“It’s been a miracle to watch,” Craig said. “You feel like a spectator after a while. Our lives have become a treatment of Bella’s cancer.
“She’s inspired me so many times. She’s taken everything with an amazing light-heartedness that I didn’t think would be possible for anyone, let alone a 12-year-old. She’s an awesome, a magical little girl.”
“When you’re dealing with something like this, you realize very quickly that some things that occupy your time aren’t necessarily the most important things anymore,” Miki said. “She’s been amazing, just an extremely strong girl who has taken it head on and never really had any moments of feeling sorry for herself.
“She’s 12 going on 40 and always has been. Hopefully, this chemo will do what it needs to do so we’ll be able to move on and she’ll be able to go back to school next year and just keep being her.”