Baby battles both cancer and mitochondrial disease

In a photo taken last June, little Lauren Bayon Brown giggles and laughs at the camera while being held by her mother.

Her mouth is wide open, showing off her toothless grin, and her eyes are squinted in pure happiness.
It's hard to imagine the beautiful, blue-eyed baby girl any other way.

But another photo taken just last month offers a stark contrast to that image.
Lying in a hospital bed, with sensors and tubes coming from her mouth and nose, Bayon, as she is called by her family, looks listless. Her eyes have lost their twinkle and she can barely move because of all the machines she is hooked up to.

The picture was taken just minutes before the 15-month-old was taken to the operating room at Riley Hospital for Children in Indianapolis for a 15-hour surgery to remove a massive malignant tumor from the lower left portion of her brain.

It was her second brain surgery in less than a week.

On March 20, Bayon's parents, Shawn Brown and Amy Bechelli, both of Seymour, noticed something wasn't quite right with their daughter.

"Crawling was very difficult," Shawn's mother, Terri Brown, also of Seymour, said. "She was falling over as she attempted to crawl."

Immediately, Shawn and Amy drove Bayon to Riley, where a CAT scan showed fluid on her brain as well as the tumor. She was then prepped for emergency brain surgery to relieve the pressure. The surgery was successful.

The second surgery, to remove the tumor, took place March 24.

"She left her ICU room at 12:30 p.m. and returned back to the ICU at 4:30 a.m. the next day," Terri said. "Midway through the surgery, we were informed that the tumor was malignant."

Terri said Bayon had started exhibiting symptoms of her illness in early March.

"She seemed to lose some of her smiling personality," she said. "She was fussy and her head began to tilt on her shoulder."
After the second surgery, the neurosurgeon met with Shawn and Amy to report a positive outcome.

"She was able to remove 95 percent of the tumor," Terri said. "It was the size of a racquetball."

However, identifying what type of cancer Bayon had proved to be more difficult.

A portion of the tumor was sent to St. Jude Children's Research Hospital, where it was determined that the cancer was medulloblastoma.

Now Bayon is beginning chemotherapy. Her first treatment was on April 10. The treatments are done in cycles that will continue for five months, all of which she will most likely have to spend at Riley.

"Their biggest worry is fear of infection and that's why she has to stay up there," Terri's husband, Chatty Brown, said.

But cancer isn't the only illness doctors have to contend with during treatment.
"At about four weeks old she was starting to have seizures," Chatty said.

Although born normal and healthy on Jan. 9, 2007, Bayon was diagnosed two months later with epilepsy.

Before doctors realized she had brain cancer, they thought her later symptoms were a result of the seizure medication she was on, Chatty said.

Later on, after her diagnosis of epilepsy, doctors suspected that Bayon might have mitochondrial disease, a genetic disorder that results from the failure of mitochondria to create the energy needed by the body to sustain life and support growth. Depending on which cells are affected, symptoms of mitochondrial disease may include loss of motor control, muscle weakness and pain, gastrointestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual or hearing problems, acid reflux, developmental delays and susceptibility to infection.

Shawn and Amy took Bayon to Atlanta last October to meet with the top expert in the field of mitochondrial disease at the Horizon Molecular Medicine Center.

Through testing, it was confirmed that Bayon did in fact have mitochondrial disease.

Because the disease is genetic, there is no cure, Chatty said.

"She's on different vitamin supplements and she does physical therapy. Basically, her cells don't make energy the way a normal person's do," he said. "But looking at her, you would never know she has this disease. Physically and mentally she is fine."

However, the mitochondrial disease severely complicates treatment for the cancer, he added.

"Because of the mitochondrial disease, the liver is of great concern to the doctors," Chatty said. "The oncologist said there isn't much information available on children with a combination of medulloblastoma and mitochondrial disease."
If the chemotherapy does not work or if Bayon cannot take the medication because of complications, further treatment may include proton beam radiation therapy.
Bayon's condition hasn't been easy on anyone in the family.

Both Shawn and Amy have been a constant presence at their daughter's side, taking time off from their jobs. Shawn is an adviser at Aisin U.S.A. in Seymour, while Amy is a hostess at Dakota Ridge restaurant, also in Seymour.

Also visiting Bayon on a regular basis are her siblings, brothers Brett Bechelli and Logan Richey and sister Breanna Bechelli, grandparents Chatty and Terri and Jim and Toni Montgomery and great-grandparents Bob and Retia Murphy.

"There's someone with her 24/7," Terri said. "I think the hardest thing for me to deal with is that she doesn't know she's sick, so when you go see her she just wants you to pick her up and play with her. She gets frustrated because she can't do a lot."

Because of the long stay, Terri said the family is trying to make the hospital seem more like home.

"We've got posters and balloons and toys," she said. "Anything to make her more comfortable and relaxed."

To help with the costs of Bayon's surgeries, treatments, medications and stay at Riley, a number of fundraisers are being organized, Terri said.

"Many individuals and church groups have expressed their concerns and have offered prayers and monetary support," she added. "Both Shawn and Amy's fellow employees have helped financially and through their prayers. We just want to thank everyone for their kindness in our time of uncertainty."