Daksten’s story: From South Dakota to Texas, Children’s Memorial Hermann Hospital gave us hope during our son’s struggle with a rare brain tumor

It doesn’t take much to entertain 5-year-old Daksten Zeller. Playing outside is his favorite thing to do. He loves exploring nature, riding his bike, playing games with his 6-year-old sister in the back yard, and he enjoys all kinds of sports. His favorite pastimes are watching football on TV with his dad and heading out to the local library with his mom and sister.

Last October, Daksten’s mom, Shalena, remembers when she and Daksten were heading to the library after school near their home in Brandon, South Dakota. She noticed something strange about Daksten as they entered the building.

“Our library has a breezeway where you go through one door to a second doorway to get into the building,” said Shalena. “I was at the second doorway and when I turned around, I noticed Daksten was not beside me like he normally is. I was like, ‘Daksten, where are you?’ and that is when he almost got hit by the door. He told me, ‘Mom, my eyes are blurry.’”

Shalena says she didn’t know what to think at the time until he experienced a second episode at home. She and her husband, Dan, thought he needed to see an eye doctor.

Daksten’s blurry vision occurred sporadically. It would last a minute or so and then all seemed normal again. While at daycare, his daycare provider noticed these unusual occurrences too. Shalena thought that he might be having seizures, but she wasn’t sure since Daksten was responsive during the episodes. When Shalena and Dan noticed their son’s eyes were wiggling a little and he was still complaining that his eyes were blurry, the Zellers suspected there was something more serious going on. On Nov. 17, 2021, they scheduled an appointment at a local clinic to see what was causing their son’s seizure-like activity.

“Every time Daksten had a seizure, it brought us to tears,” said Shalena. “We told the doctor about his symptoms. My husband and I explained our versions of what we saw. The doctor ordered an EEG to detect any abnormalities in the electrical activity of our son’s brain. The EEG came back abnormal. There weren’t any seizures detected, but they noticed part of his brain would slow down when he got tired. The doctor wanted to do a 3-to-5-hour EEG, and if the results were abnormal, they would do an MRI.”

While still trying to figure out the culprit behind Daksten’s blurry vision, Shalena was 7 months pregnant with the couple’s third child and was scheduled for a Cesarean section on Jan. 10, 2022. In an effort to find out the gravity of situation right away, the Zellers decided to bypass the EEG and go straight to the MRI.

“I was with my students at school when I got the call the following day,” said Shalena, who still gets teary-eyed recalling the conversation she had with Daksten’s pediatric neurologist. “When she told me Daksten had a brain tumor that was the worst news of my life. I don’t know what pushed us to skip the three- to five-hour EEG for now and move forward with the MRI. When I look back on it, I guess you can say it was divine intervention coupled with a mother’s intuition. The pediatric neurologist had scheduled an appointment with a pediatric neurosurgeon in Sioux Falls just before Christmas.”

While waiting for the consultation appointment, Shalena and Dan confided with a few of their close family members, including Dan’s sister, to share the news about Daksten’s brain tumor. When Dan’s sister called them back, she shared a story about a friend whose son had five brain surgeries with Dr. David Sandberg, a pediatric neurosurgeon at Children’s Memorial Hermann Hospital in Houston. They encouraged the Zellers to talk to their family friend about their experience, and to reach out to Dr. Sandberg, who is the division director and Dr. Marnie Rose Professor in Pediatric Neurosurgery at McGovern Medical School at UTHealth Houston and UTHealth Houston Neurosciences, to get a second opinion about Daksten’s condition.

“In our minds, we were like, he’s in Texas – that’s too far from home. Then, we googled Dr. Sandberg and everything about him was remarkable. I emailed him and referenced my sister-in-law’s friend whose son was one of his patients, I told him about our family situation and Daksten’s newly diagnosed brain tumor,” said Shalena.  “Even though we were meeting with a pediatric neurosurgeon in Sioux Falls, I asked him if there was any way he could view Daksten’s MRI images for a second opinion. Ten minutes later, Dr. Sandberg emailed me back and said he would love to review Daksten’s MRI images and see how he could help our family.”

On Dec. 20, 2021, the Zellers met with the pediatric neurosurgeon in Sioux Falls. It turned out he didn’t want to operate on Daksten’s brain tumor at the time. Instead, he formed a long-term care plan for Daksten which was monitoring the brain tumor every three months to see if it changed in size. He told the Zellers that when their son was around 8 or 9 years old, he would remove the tumor then.

For the Zellers, that plan did not work. As long as the tumor was lodged in their son’s brain, Daksten would still have seizures and blurry vision. Shalena says there were times Daksten would have four seizures in a day. Some seizures lasted for 30 seconds while others lasted two minutes. Advocating on their son’s behalf, the Zellers got the MRI images from the Sioux Falls hospital and sent them to Dr. Sandberg.

“The next day, he called me, and said there was no reason to leave this tumor in there since it was causing issues for Daksten right now. He said we needed to get it out soon,” Shalena said. “I asked him if he had performed this surgery on a young child like Daksten, and he said he performed it on a one-week-old baby. He was a godsend, and we knew our son would be in safe hands.”

Daksten’s brain surgery was scheduled for Jan. 19, 2022, at Children’s Memorial Hermann Hospital. Five days after they welcomed their third child into their family, the Zellers made the 16-hour drive to Houston with Daksten. The day before his surgery, Daksten tested positive for COVID-19, so they had to postpone the surgery until Feb. 2, 2022. Despite this unexpected setback, the Zellers found a silver lining in their situation. When they returned to Houston the second time, they brought their two daughters with them. They were going to do this together as a family.

“Daksten had his MRI a day prior to his surgery, and thankfully his brain tumor had not grown,” said Shalena. “We met with Dr. Sandberg over the phone to discuss Daksten’s surgery. He talked us through the whole surgical procedure and told us about the benefits and consequences. The most that could go wrong was Daksten could lose some of his left side peripheral vision, and being just 4 years old, that is something that he may never even notice.”

On Feb. 2, 2022, Dr. Sandberg performed Daksten’s six-hour procedure to remove the brain tumor. The type of tumor he had was a pleomorphic xanthoastrocytoma, a relatively rare benign tumor.

“Daksten’s tumor measured 2.5 centimeters, which is not extremely large, but it was in a challenging location deep in the occipital lobe of the brain,” said Dr. Sandberg, director of Pediatric Neurosurgery at Children’s Memorial Hermann Hospital. “We worked in between the two cerebral hemispheres to minimize damage to the brain, and we entered the brain at the site of the tumor and removed it completely.”

After the post-surgery MRI showed no sign of the tumor and after spending almost two weeks in Houston, Daksten and his family got the all-clear to go home. Four months after his surgery, Daksten is doing remarkably well. He has had no seizures since surgery, and his vision is clear. One important lesson the Zellers learned from Daksten’s journey was to never second guess yourself on getting a second opinion.

“We had a whole different care plan with a second opinion. Our little boy’s story has given us a new perspective on life,” Shalena said. “We believe it was God’s perfect plan that Dr. Sandberg would be our son’s neurosurgeon. He was confident in the most caring way. Our whole family was his family at that moment. From the nurses to our patient navigator, Leigh Anne Cutting, to the staff who got our paperwork and insurance set up for our son’s surgery – we could not have done this without their support. Children’s Memorial Hermann will hold a special place in our hearts forever.”

If you’d like to learn more about our Pediatric Neurosurgery Program, please visit memorialhermann.org/childrens-neuro.

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Ali Vise