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Network of ‘superheroes’ is supporting 6-year-old Luke as he battles rare disease –

by Terri Hogan
Senior Staff Writer
The future holds a lot of unknowns for Rich and Nancy Engler and their family.
In late September, their son, Luke, 6, was diagnosed with a rare form of pediatric brain cancer.
They are trying to make the most of every moment and drawing strength from the support of family and friends.
The nightmare for the Olney family began a few days earlier, when Rich Engler was laid off from his job.
He took Luke, along with his daughters Lucy, 9, and Amber, 7, to get flu shots before his health insurance expired at the end of the month.
Later that evening, Luke complained of feeling “wobbly.” The next day, he felt worse, and began closing one eye because he was having double vision.
The next few days included visits to the pediatrician, the Emergency Room, an ophthalmologist and neurologist, along with an MRI and a spinal tap.
Then their fears were confirmed: doctors had found a mass on Luke’s brain stem.
They were sent to Children’s National Medical Center where they received the diagnoses — Diffuse Intrinsic Pontine Glioma (DIPG), a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight and balance.
Nancy stayed at the hospital with Luke that evening, while Rich went home to be with the girls. He Googled DIPG and stumbled upon the website of the Michael Mosier Defeat DIPG Foundation, based in Bethesda.
From the website he learned DIPG affects children almost exclusively. Approximately 200-400 children in the United States are diagnosed with DIPG each year. The children are typically between the ages of 4 and 11.
He also learned that most children diagnosed with DIPG succumb to the disease within nine to 24 months.
He sent a “rambling” email through the website and soon after received a response from Mark and Jenny Mosier, who created the foundation in memory of their 6-year-old son Michael, who battled DIPG for eight and a half months before passing away in 2015.
Following the email exchange, they talked on the phone and the Mosiers met Rich and Nancy at the hospital the following day to share their knowledge and offer support.
Support began to pour in from others, as well.
“LukesSquad,” a superhero team of friends, family, classmates and others, was assembled to support Luke.
Rich and Nancy say Cashell Elementary School, where all three children attend school, has offered incredible support.
In addition to the caring teachers and administrators, the school sold over 400 LukesSquad T-shirts. Several local businesses and organizations contributed to the purchase and printing of the shirts, and the proceeds of the sale went to the Engler family.
Luke attended the school’s Halloween parade where all of the teachers and staff were wearing the T-shirts and capes.
Nancy Engler works as a hairstylist at Symmetry Salon Studios in Rockville, and as difficult as it is to leave her family, she tries to work as much as she can.
She said her clients and coworkers have gone above and beyond to offer their support. Before Luke got out of the hospital, they had set up a meal train and a YouCaring fundraising page.
Lucy and Amber have become Luke’s biggest cheerleaders.
“We try to focus on ‘family first’ and ‘teamwork,’” Rich Engler said. “They don’t understand the severity of what is happening. They think this will go away like a cold.”
Right now, Luke is doing well — feeling good and in good spirits.
He recently got to meet Washington Capitals captain Alexander Ovechkin. And the family is preparing for an upcoming Disney Cruise, granted by the Make-a-Wish Foundation.
For six weeks, Monday through Friday, Luke has traveled to Sibley Memorial Hospital, where he has endured 29 rounds of radiation.
Rich said Luke has been treated by an amazing group of people there — nurses, radiologists, technicians and anesthesiologists.
“We’ve been very fortunate to work with such caring and skilled professionals,” he said.
While coming to the end of 29 radiation treatments sounds like it would be a relief, that brings its own challenge.
“What comes next?” Rich Engler said. “There is not a go-to treatment for this. Our only options are clinical trials, which is really scary.”
Rich said they were stunned to learn that cancer is the number-one disease killer of children, yet only 4 percent of funding tied to cancer research is focused on pediatric cancer.
“It is shocking that something affecting children this much be underfunded,” he said. “We want to help spread awareness.”
In the meantime, Rich and Nancy Engler live with Nancy’s parents, having moved back to Olney in 2013 after short selling their home in Clarksburg. They were preparing to buy a home in Olney when all of this began, but their priorities changed.
While the unknowns remain, Rich and Nancy are determined to “pray for the best and expect miracles.”
“We’ve been incredibly fortunate,” Rich said. “We just don’t know what is going to happen next. The world we’ve been shoved into is dark, but we are trying to be positive and bring as much hope as we can, moving forward.”
The kindness of others has helped.
“People are good,” Nancy said. “So many wonderful people have been so good to us. That’s what makes me emotional.”

To learn more, follow Luke’s journey at https://www.facebook.com/LukesSquad/.
To help, go to https://www.youcaring.com/lukeengler-968508
To learn more about DIPG, go to www.defeatdipg.orgs

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