'Our world stopped': Navy family fights childhood cancer
By LISA RHODES | Soundoff! Laurel, Md. | Published: September 8, 2018
(Tribune News Service) — In January 2016, Thomas Lewis began experiencing excruciating migraine headaches just before his sixth birthday.
Although his parents, Derek and Navy Lt. Cmdr. Amber Lewis, gave him over-the-counter pain relievers and also called the nurse advice line at Kimbrough Ambulatory Care Center, Thomas continued to suffer.
Eventually, he complained about headaches during the day and also became clumsy, bumping into walls around the house, said Derek Lewis.
The Fort Meade family soon grew fearful about Thomas and exhausted by their efforts to help him.
On March 28, 2016, a visit to a neurologist at Walter Reed National Military Medical Center in Bethesda led to an MRI and a diagnosis of brain cancer.
Today, after a year of chemotherapy and proton therapy treatments, Thomas shows no evidence of the disease. The 8-year-old is now attending third grade at Manor View Elementary School.
To raise funds for pediatric cancer research, Amber Lewis, a public affairs instructor at the Defense Information School, is participating in The Million Mile, a national walk-run marathon held to show support for and bring awareness to Childhood Cancer Awareness Month in September.
"Pediatric cancer is real," she said. "It can be your child."
The monthlong marathon, which started Friday and ends Sept. 30, is sponsored by Alex's Lemonade Stand Foundation.
The national nonprofit organization is "dedicated to raising funds for research into new treatments and cures for all children battling cancer," according to its website.
"I run for the military, but it also became a stress relief," said Lewis, who ran during her son's bout with cancer. "I call it running away from cancer. I can't cure it, but I can raise awareness about the need for new treatments.
"Some of the treatments for pediatric cancer are more than 20 years old. And chemotherapy is a nasty form of treatment. This is certainly a cause that is near and dear to our hearts."
Participants of all ages will collectively walk, run or ride as many miles as possible to reach the goal of a million miles during September, according to the website.
'Our World Stopped'
Thomas was diagnosed with a desmoplastic round cell tumor, an extremely rare form of cancer usually found in the belly.
According to St. Jude's Children Research Hospital, "fewer than 200 cases have been reported. ... Boys and young men are about four times as likely to have DSRCT as girls and young women. It is usually diagnosed in males between ages 10 and 30."
The cancer is so rare that there are few documented cases, and protocols for treatment are still being researched and discovered.
One in 285 children in the U.S. will be diagnosed with cancer by age 20, according to the Alex's Lemonade Stand Foundation. Childhood cancer is the leading cause of death by disease in children under age 19 in the U.S.
Yet the foundation reports that despite these facts, childhood cancer research only receives 4 percent of the annual budget from the National Cancer Institute, the federal government's principal agency for cancer research.
Amber Lewis said it was "terrifying" when the diagnosis was made.
"We were in utter disbelief. Our world stopped," she said. "It knocks the wind out of you."
Doctors told Thomas about the diagnosis.
"I was sad," Thomas said at the family's home in Potomac Place.
He later named his tumor "Mr. Stupid."
Lewis said her husband was resilient and stayed by his son's side every day after the surgery, which took place at Walter Reed the same week as the diagnosis.
Since the cancer is so rare, doctors examined the DNA of Thomas' tumor to make the diagnosis and determine the best form of treatment.
Thomas underwent two rounds of radiation and 10 rounds of chemotherapy at Walter Reed. He was then transferred to The Cancer Center at Children's Hospital of Philadelphia for proton therapy, another form of radiation, for six weeks.
The treatments were performed every three weeks for three to five days per week. Derek Lewis said his son took the treatments in stride.
"He was always happy any time he wasn't sick [from the treatments]," Lewis said. "He never complained."
Thomas said the treatments "tasted bad."
While in Philadelphia, the family stayed at a local hotel. Amber Lewis said the costs of staying out of town began to mount.
The Lewis family includes four other children – Emily, 11; Eleanor, 5; Madeline, 2; and Ashley, 6 months.
A social worker at the hospital told the family about the Alex Lemonade Stand Foundation and its work to help the families of children with cancer. The nonprofit paid the costs of the family's hotel stay.
A Return To Normalcy
Amber Lewis said she participated in the annual Fort Meade Run Series throughout the experience and often took Thomas with her in a jogging stroller.
She first participated in The Million Mile in September 2016 and raised $100.
Derek Lewis said the family supports The Million Mile as a way to "reach out to other people who are cancer parents."
"It can be a kick in the gut," he said.
Last September, Thomas raised $460 by establishing his own lemonade stand with help from the nonprofit.
Thomas now enjoys playing outside with friends, riding his bicycle and playing hockey. He undergoes MRIs and blood tests every five to six months.
The family is enrolled in Fort Meade's Exceptional Family Member Program. As a Navy family, EFMP provides 40 hours of respite care that gives Thomas' parents time to run errands or go to a movie.
Amber Lewis said that shortly after the diagnosis, she wondered why her son got this rare form of cancer.
"I would not wish this on anyone," she said. "I wish I had known before my son's diagnosis just how real childhood cancer could be and how important more research is."
(c)2018 the Soundoff! (Laurel, Md.)
Visit the Soundoff! at www.ftmeadesoundoff.com
Distributed by Tribune Content Agency, LLC.