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Mother talks about loss of child after diagnosis of brain tumor

Keaton Sundeen was diagnosed with diffuse intrinsic pontine glioma, a very rare and aggressive type of childhood cancer that forms in the brainstem, according to the National Library of Medicine.

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Jennifer Sundeen talks about the events that led to her son's death. Keaton Sundeen passed away the day after his ninth birthday while he was on a family trip in Orlando.
John M. Steiner / The Jamestown Sun
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JAMESTOWN – Keaton Sundeen was just walking into Roosevelt Elementary School on April 27 after he was dropped off by his father when he tripped.

Keaton, 8, was wearing rubber rain boots when he tripped walking across rocks and fell, skinning his left side of his face and left knee. His father, Daniel Sundeen, saw Keaton fall and made sure he was OK before sending him to school.

“Kids are clumsy,” said Jennifer Sundeen, Keaton’s mother. “I didn’t think anything of it. ”

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Keaton Sundeen was only 9 years old when he passed away June 13 in Orlando where a family trip was planned. He was diagnosed with diffuse intrinsic pontine glioma, a very rare and aggressive type of childhood cancer that forms in the brainstem, according to the National Library of Medicine.
Contributed / Jennifer Sundeen

Keaton was eventually diagnosed with diffuse intrinsic pontine glioma, and Sundeen was told her son had six to 12 months to live. The location of the tumor was inoperable because of the pons that is located right above the brainstem.

“The pons is what controls your heart rate and your breathing and just some of those functions that you don’t really think about,” Sundeen said. “So they can’t obviously operate on the pons without really messing with functions that you need to live. There is no chemo that takes care of it. The only thing that can touch it is radiation.”

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It was 44 days from the time Keaton had tripped to when he passed away the day after his ninth birthday, June 13, while the family was in Orlando.

“We realized how fast life can change,” she said.

Diagnosis and radiation

After Keaton’s fall on April 27, Sundeen said he ate breakfast at the school the same day and was doing fine. But she received a call later in the morning from the school because he was vomiting.

Sundeen said Keaton would wake up and vomit for the next two days. But on April 30, she said she noticed Keaton’s condition was declining.

“He hadn’t really eaten a whole lot, and what he had eaten, he hadn’t kept down,” she said. “So we decided to take him into the emergency room.”

The Sundeens took Keaton to Jamestown Regional Medical Center where a doctor immediately did a computerized tomography scan that found a tumor on his brain. The family was referred to Sanford Children’s Hospital in Fargo.

An MRI was done on Keaton on May 1 to get more imaging of the brain tumor as well as a biopsy. Keaton had reacted poorly to sedation, Sundeen said.

“He was sedated for both the MRI and the biopsy so he was kind of struggling with coming out of sedation and dealing with that,” she said. “You could tell his health was starting to decline like he hadn’t eaten anything really or kept anything down.”

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Three days later, doctors put a feeding tube in Keaton so he could get some calories and energy.

“We could see a little bit of improvement after he had finally gotten some nutrition,” she said. “But, he was starting to have more trouble walking and more trouble talking and some other issues with his movements.”

A couple days later, Sundeen was told about Keaton’s diagnosis of diffuse intrinsic pontine glioma, a very rare and aggressive type of childhood cancer that forms in the brainstem, according to the National Library of Medicine. She was told the only possible option was to do radiation to shrink the tumor.

She said prior to Keaton tripping and falling on April 27, the family did not see any indications that he could have a brain tumor. In April, she said Keaton woke up with a headache but that was only about two or three times.

“It wasn’t like every single day for five weeks in a row,” she said.

The family eventually received a call from a Mayo Clinic doctor who was doing a clinical trial where instead of doing all six weeks of radiation at one time, it was broken into chunks of two weeks each, Sundeen said. For the clinical trial, he would be given 10 sessions of radiation and then monitored and given 10 sessions and monitored.

“So they were hoping by doing that they were able to extend life a little bit more and give some more time in between sessions and everything,” she said.

Keaton would receive his radiation treatments over the next two weeks at Mayo Clinic in Rochester, Minnesota. She said it was difficult to say if she saw any improvement in Keaton because a doctor told her getting radiation is like “getting punched.”

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“Everything is going to swell to begin with,” she said. “We were seeing some decrease in some things, but Keaton was such a trooper. He never lost his sense of humor.”

After receiving the 10 sessions of radiation, Sundeen and Keaton were released from Mayo Clinic on May 25.

Family trip

The Sundeens had planned a trip to Florida in 2020 that eventually got booked in 2022 because of the coronavirus pandemic. The family was planning to go to Walt Disney World and Universal Studios in Orlando and would leave on June 11, the day before Keaton’s birthday.

Before they left, Sundeen said she spoke with doctors at Mayo Clinic about the trip and if Keaton could go on an airplane.

“Everybody seemed like it would be no problem,” she said. “There should be no issues with us going. They were actually giving us some tips to be able to take him on vacation.”

A couple of days before the Sundeens left for their trip, an MRI showed the tumor had shrunk. She said the doctor was a little concerned about his ventricles being a little enlarged.

“She said again everything should be fine,” she said. “There is no concern as to us not being able to fly.”

Another doctor at the Roger Maris Cancer Center had no concerns about Keaton going on the trip, Sundeen said.

Eventually the family left for their trip, but Keaton struggled with the pressure in his head from flying, she said.

“That was probably the worst part is that he just really seemed to struggle in the airplane,” she said. “We were second guessing ourselves. Should we have done this because everybody said it was fine. There was no concern.”

After landing, Keaton seemed better. He was having fun and dancing to music that his sister was playing on her watch. After Keaton took a nap and had fun seeing family members, the Sundeens got some rest before the next day.

During the middle of the night, Keaton woke up screaming and had a fever. Sundeen said she called a pediatric oncologist from Fargo who recommended giving Keaton some Tylenol or Motrin and another dose of steroids.

“We did all that and he settled down,” she said.

Keaton woke up again around 4 a.m. looking like he was uncomfortable, but he fell back asleep. Sundeen said she checked on him at 8 a.m. and his temperature had risen to 103.4 degrees. The Sundeens took Keaton to Orlando Health Arnold Palmer Hospital for Children.

“So we get to the hospital and they triaged him and decided to immediately move us to an ER (emergency room), trauma room,” she said. “He wasn’t responsive and he started throwing up.”

He got a CT scan that would show he had massive hemorrhaging in his brain.

“The neurosurgeon said that he could put in a drain to drain some of the blood but that basically it would be just like putting a Band-Aid on a much huger problem,” Sundeen said.

She said the they spent the day in the intensive care unit at the hospital saying goodbye to Keaton and holding him.

“Then they pulled his ventilator tube at about 10 that evening,” she said. “Dan and I crawled into bed and held him. And at 4:30 the next morning (June 13), my husband and I had to make the toughest decision of our lives to remove Keaton’s ventilator tube.”

‘Felt the love’

Sundeen said fundraisers and benefits were held to help pay for Keaton’s medical costs. She said a benefit was held in St. James, Minnesota, where she is from, and two different T-shirt fundraisers were held.

She said funds raised from a car wash organized by a youth group were matched by Lloyd’s Toyota.

A benefit in Jamestown was also planned for July 29, well before Keaton’s death. Cornerstone Nutrition held a fundraiser for the Sundeens on Aug. 2.

“We felt the love coming from everywhere,” she said.

T & K Pediatric Services matched donations from 701 Apparel and opened Keaton’s Closet, which works the same as a little free library where gently-used toys can be donated and exchanged.

“Keaton loved to read and loved to play games,” Sundeen said. “One of the things he said he needed to do was give away his toys for other boys and girls. He was such a generous, loving little boy. He just wanted to share love with the world.”

She also said a benefit account for Keaton was set up at First Community Credit Union.

Masaki Ova joined The Jamestown Sun in August 2021 as a reporter. He grew up on a farm near Pingree, N.D. He majored in communications at the University of Jamestown, N.D.
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