<img height="1" width="1" style="display:none" src="https://www.facebook.com/tr?id=192888919167017&amp;ev=PageView&amp;noscript=1">
Thursday, March 28, 2024
March 28, 2024

Linkedin Pinterest

Battling rare brain tumor against all odds

Family travels to Germany in hope on helping son

By Laurie McGinley, The Washington Post
Published: February 13, 2017, 6:04am
3 Photos
His father gives Elijah a cannabis oil extract, which some people think has anti-cancer properties.
His father gives Elijah a cannabis oil extract, which some people think has anti-cancer properties. (Photos by Bonnie Jo Mount/The Washington Post) Photo Gallery

It was the most ordinary of family dinners, with pizza and cauliflower. Two exhausted parents sipped red wine. Two children giggled over silly jokes and squabbled over a stuffed animal named Baby Jaguar.

A few moments later, 8-year-old Elijah Simpson-Sundell, his face slightly swollen and his speech slurred, walked unsteadily away from the table. His father gently reproached 6-year-old Genevieve: “When your brother wants something, and he doesn’t feel well, we should try to accommodate him.”

For months this Rockville, Md., family has veered between such quiet prescriptions and desperate searches. They’ve flown repeatedly to Europe, to a clinic that is one of the few places anywhere offering a fragment of hope. Along the way, Brad Simpson and Kristin Sundell have discovered a small community of families grappling with the same unimaginable scenario — a child with a rare, universally fatal brain tumor.

Amid the progress being made on other fronts in oncology, children’s cancers present a particular challenge given the lesser attention and research funding that many get. One of those is DIPG, letters that Elijah’s parents heard for the first time with his diagnosis. Diffuse intrinsic pontine glioma is a doubly devastating tumor: Not only is it intractable, infiltrating the brain stem in a way that makes surgery impossible, but it affects only young children.

Astronaut Neil Armstrong’s 2-year-old daughter died of the disease in 1962, and treatments today are no more successful.

In such a bleak landscape, Elijah’s story is remarkable because of the lengths to which his parents have gone to try to save him. Yet it is also unremarkable — because others have done the same for their children.

“As parents, you are facing not just overwhelming odds but zero odds,” Simpson said. “You will do anything.”

‘Encouraging’

Almost 4,000 miles away in Cologne, Germany, is the private clinic that his family sought out. It’s one of the few places in the world offering immunotherapy for DIPG. The centerpiece of its effort is a vaccine made from each patient’s own white blood cells and tumor antigens, which are proteins that produce an immune response. The goal is to allow the immune system to recognize and attack the cancer.

After 18 months and 29 children, the results are “encouraging,” said pediatric oncologist Stefaan van Gool. But it’s far too early to know whether the approach extends survival. “We have to wait,” he acknowledged.

Elijah has flown to Cologne three times since October. In between sessions at the clinic, he visited the Schokoladenmuseum — the Chocolate Museum — played cards and made friends with some of the other young patients.

If only he’d been diagnosed five years from now, things might be different, doctors in the United States have told his parents. Much is being learned about the disease, and several clinical trials are being planned or started to test new approaches.

The family’s reality, however, is the here and now.

Elijah, says his father, “almost certainly won’t benefit from the research.”

Cruelty of disease

He is a fan of Star Wars, Pok?mon and the color orange. He’s fond of soccer but also the piano. All in all, a pretty typical 8-year-old boy — until his medical history is added into the mix.

Elijah was born with a skull malformation that was corrected surgically when he was a baby. As he grew, he remained smaller and less physically robust than his peers. And then, about a year ago, he became increasingly sluggish.

“His speech got slower,” remembers his mother, director of aid effectiveness at the nonprofit Save the Children. “And then one weekend his foot turned in and he lost his balance.”

Sundell took Elijah to his pediatrician, who immediately sent them to Children’s National Medical Center.

Within days, a genetic test confirmed Elijah had DIPG’s classic mutation.

The disease attacks the brain stem, which controls essential functions such as heart rate, breathing and swallowing, with brutal efficiency; its victims lose their ability to walk, talk, even smile. About 200 to 400 youngsters are diagnosed in the United States every year, and half are gone within nine months. Ninety percent are dead within two years.

“The extreme cruelty of this disease is that it steals each function of the body one by one, from a child who is mentally intact,” said Jenny Mosier, whose son Michael was diagnosed shortly after starting kindergarten in 2014. He died the following spring. “It is the worst of the worst.”

No drugs work against DIPG, and radiation treatments provide only a temporary reprieve. So patients often are enrolled immediately in clinical trials. But nothing appropriate for Elijah was open at the time. He underwent several weeks of radiation to try to shrink his tumor and relieve some of his symptoms. Exhausted, he used a wheelchair when he returned to school in late spring.

His second-grade classmates greeted him with a huge conga line and took turns pushing him around the playground.

“You realize the tremendous capacity of young children for love and empathy,” Simpson said.

The boy rebounded, and in September his neuro-oncologist at Children’s, Lindsay Kilburn, put him on panobinostat, a drug that has been shown to inhibit DIPG tumor growth in mice. His parents added daily doses of cannabis oil, which some people think has anti-cancer properties. That same month, the family traveled to South Africa for a safari, courtesy of the Make-A-Wish Foundation.

Yet the clock was conspiring against him. Ninety-five percent of DIPG tumors return five to nine months after children finish their radiation treatments. Elijah’s had ended in June.

With no additional options, his increasingly frantic parents decided to take him to the IOZK clinic in Germany. Each time, doctors started by giving Elijah infusions of a virus designed to infect and mark the cancer cells. They also used hyperthermia, exposing his tumor to heat to try to damage it. Finally, he got a tailor-made vaccine combining his white blood cells and proteins from his tumor.

The three-round package cost about $45,000 and wasn’t covered by insurance. Elijah’s parents turned to family, friends and sympathetic strangers for financial help. They appealed via Facebook and the crowdsourcing site YouCaring.org and raised tens of thousands of dollars to cover the treatments, airfare and lodging.

“The only silver lining to this is all the people who have come out to support us,” Sundell said. “It’s really humbling.”

Loading...