Turning tragedy into awareness

When Nathan Langley turned 10 on Feb. 1, 2013, he was going about his everyday life in his Highland Village home. Six-weeks later, on March 15, he passed away in Children’s Hospital of Dallas from Stage 4 Sporadic Burkitt lymphoma (sBL) with bone marrow involvement.

Nathan was a typical kid who loved to draw, Legos and giraffes. “We’d decorated his nursery with giraffes and his favorite stuffed toy when he was little was a giraffe,” said his mother, Linda. “We’ve taken trips to Busch Gardens in Tampa just to see the giraffes.”

The week of March 1 is awareness week for Burkitt’s Lymphoma, a very rare form of cancer with about only 300 new cases a year in the United States. It is an aggressive form of non-Hodgkin’s lymphoma (NHL); a cancer of the lymphatic system, which helps the body fight infections.

“You know, you read about how ‘rare’ this cancer is, but when it comes home and it’s your child, it no longer feels so ‘rare,’” said Linda Langley. “It’s the most aggressive cancer there is that affects mainly children, but it’s not so well-known.”

Langley said that she took Nathan, who had a history of asthma, to the doctor originally for what was diagnosed as pneumonia.

“He was on antibiotics and was getting better, but he’d started complaining of his stomach not feeling well. No one paid extra notice, because it’s not uncommon for antibiotics to have that reaction.”

On March 4, Nathan was admitted to a Plano hospital after a chest x-ray revealed complete infection in his right lung; his left lung followed on March 8. Chest tubes had drained a substantial amount of fluid from his lungs and he seemed to respond; the tubes were removed.

Swelling in his abdomen became noticeable on March 11; three days later he lost feeling in his legs. When he was admitted into the intensive care unit of Children’s Hospital in Dallas, his waist measured 54-inches and—following a CAT-scan—five or six tumors were discovered in his belly.

“Nathan was in respiratory distress and had a temperature of 104-degrees, so the chest tubes were put back in and he was also put on a ventilator,” said Langley. “He was also put on the cancer medication Rituximab and dialysis was started to help remove all the body toxins.”

Linda had not slept for three days and had eaten little. Both she and her husband, James, had been contacting relatives, including Nathan’s 23-year old brother, Joseph Herrmann, a married father of two at Marine Corps Base Camp Lejeune in Jacksonville, N.C.

Nathan’s parents had met with his oncologist at 10:45 a.m. on March 15. They spent time with Nathan, who appeared to have stabilized.

“I’d left my car up in Plano at that hospital when Nathan was moved down to Dallas,” said Langley. “Nathan was resting and with people coming in to the airport, we were told it would be a good idea to get some food, get some rest and get my car from Plano. We got in the elevator and when we reached the lobby, we were called back upstairs. It was only nine hours after we talked to his doctor in the morning that Nathan was gone.”

Langley said that Nathan’s autopsy showed that every lymph node in his body was affected and chromosome number 814, which controls cell division, was “super-charged.”

“By the time of Nathan’s autopsy, there were 46 tumors—the largest in his liver,” said Langley. “One of the major symptoms of Sporadic Burkitt lymphoma is swelling in the belly from tumors in the abdomen. If the pneumonia and antibiotics hadn’t masked his stomach complaints, the correct diagnosis might have been caught in the early stages.”

Common findings and symptoms in patients with Burkitt lymphoma include: abdominal masses, which can cause abdominal pain and distention; nausea and vomiting; loss of appetite; change in bowel habits; gastrointestinal bleeding; and renal failure.

“We’ve released all the medical records and they’ve already been shared at recent conferences,” said Langley. “If sharing what happened with Nathan can possibly save one life, then we know that’s what he’d want. We didn’t tell him exactly what he had, because he would have been so worried about us; he had such a big heart for others.”

The Langley family’s hope is that by spotlighting Burkitt’s Lymphoma Awareness Week, parents and health-care professionals will be aware of the disease’s symptoms which could help speed up the diagnosis timeline.

“The saying: ‘if it walks like a duck and talks like a duck, it must be a duck,’ turned out to be a zebra in Nathan’s case,” said Langley. “We hope that if people read or hear about Nathan’s story, they’ll remember it and take a second, closer look at symptoms that might mean more than a quick glance.”

She added that when a rare Rothschild baby giraffe was born on March 22 last year at the Leo Zoological Conservation Center in Greenwich, Conn., one of Nathan’s aunts submitted Nathan’s name and his story to the “name the baby giraffe” contest. With only 670 of this type of giraffe in the world, naming her gained national attention. She was finally named “Sandy Hope” to honor the 26-victims of the Sandy Hook Elementary School tragedy in Newtown, Conn. The entry for Nathan came in a close second.

“People have been so supportive,” said Langely. “The Heritage Elementary PTA sent us a balloon sculpture and it’s still standing after 10 months; it’s a little deflated, but still standing. I think that means something.”

Visit www.lymphoma.org for more information about Burkitt’s Lymphoma.


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