August 12, 2004 Issue                                       

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©2006 The Chestnut Hill Local

Hill family fights to save son
After three invasive surgeries, Cameron Brown, 5, continues to suffer from a brain tumor. His parents are seeking an experimental treatment in Boston.
by MICHAEL J. MISHAK

Cameron Brown strums his guitar on the front porch of his Chestnut Hill home after undergoing preparation for proton beam radiation treatment in Boston last week. (Photo by Michael J. Mishak.)

Merri Brown knew her son
Cameron had a brain tumor.

Doctors would tell her otherwise, offering explanations of common childhood ailments like stomach viruses.

But six months before the diagnosis, Merri noticed her then 4-year-old boy was not himself. She observed unexplained headaches, vomiting and memory loss. She was so fixated on the possibility it was a brain tumor that her husband, Drew, thought she should see a psychiatrist.

From November 2002 to February 2003, “things went downhill fast,” Merri said.

Cameron screamed and shouted without reason. At one point, he could not stand without support. And it was the women in Cameron’s life that knew something was terribly wrong. His mother, his teacher, his aunt, his babysitter. “The older I get, the more I think there’s something to this women’s intuition thing,” Merri said.

On February 25, 2003, she took Cameron to Children’s Hospital of Philadelphia, where her worst fears were confirmed. A CAT scan revealed an orange-sized tumor that Cameron’s brain had somehow accommodated.

“I was numb,” Merri said. “It was surreal. I was living a parent’s worst fear.”

What followed remains a blur.

Three days later, her son underwent life-threatening surgery to have the tumor removed.

“You don’t have time to think about it. You’re thrown into this whirlwind in a world you don’t even know exists — teams of doctors, endless medical forms, calls to the health insurance company.”

A network of family and community members made all the difference, Merri said.

Merri’s sister, Joy, took care of the Browns’ two other children — Emily, 9, and Graeme, 4 — while the couple spent the next month with Cameron at the hospital. Christ Ascension Lutheran Church, “the little church with the big heart,” also offered support and prayer, Merri said.

“I don’t know how people do this without relatives around,” she said. “When you live in a community like Chestnut Hill and have a family like ours, it’s everything. We consider ourselves lucky.”

Last Saturday, Cameron exhibited no signs of illness during a two-hour visit by a Local reporter. That perception of good health, called “clinical wellness,” has made the last 18 months tolerable for the Browns, Merri said.

Cameron played Frisbee with his brother and sister on the front lawn of their Chestnut Hill home. Eager to show off, he also played a few tunes on his acoustic guitar, showcasing the stickers he’s earned from practicing.

But three surgeries and 18 months later, Cameron is still fighting for his life.

After suffering two complications from surgery, Cameron must undergo yet another procedure to eliminate the returning tumor.

Last week, the Browns traveled nine hours to Boston’s Massachusetts General Hospital, one of only two institutions in the United States that offer an experimental form of radiation treatment. “We’re giving our son the best chance we feel is possible,” Merri said, choking back tears.

Over lunch, Drew and Merri shared their experience last Saturday as Cameron and his siblings filed in and out of the dining room.

“I find myself angry at Cameron sometimes,” Merri said. “And I know that’s wrong, but I experience feelings I don’t understand a lot.”

Faced with the fact that Cameron will lose his pituitary function as a result of the radiation therapy, Drew — an engineer by training — remains optimistic. Synthetic hormones will allow Cameron to have a normal life, he said. “We have a lot to be grateful for,” he added. “I see this as an engineering problem that has a solution.”

When asked about his trip to Boston, Cameron offered a remarkable answer for a patient who just underwent radiation preparation. “It was really cool,” he said. “They had an indoor pool,” he said, referring to the hotel where he and his parents stayed. He underwent an MRI without sedation, a rare feat for many adults, Merri said.

Through it all, Cameron has shocked his parents with a surprising level of maturity. “I’ve learned so much from him,” Merri said. “He’s really taught me about trust.”

Last Wednesday, a no-fuss Cameron was fitted for a special mask to be worn during the six-week treatment he starts this week. “If you met him you’d think there’s nothing wrong with him,” she said.

When any headache could signal another disaster, Merri said, the Browns delight in the moment.

The Browns have kept an open dialogue with their children about Cameron’s condition, and have attempted to make life as normal as possible for him.

Cameron still enjoys karate, swimming, horseback riding and wrestling his younger brother. “We bite our lips,” Merri said. “There are no physical restrictions on him, so we don’t treat him any differently than our other children. It would be a disservice for him to live in a bubble.”

The outpouring of community support has heartened their family. Merri said she didn’t cook a single meal for the three months after Cameron’s first surgery. Family and neighbors painted, decorated and furnished the children’s bedrooms while the couple spent their days and nights sleeping in Cameron’s hospital room. “People that couldn’t do some sort of work threw checks at us,” Merri said. “We have been floored by the generosity. It makes everything palatable. It helps you survive.”

A story of survival

Though doctors thought they removed the entire tumor in February 2003, it had taken its toll on Cameron’s pituitary gland. He was left dependant on two medications to regulate adrenaline and stress hormones.

Two months later, Cameron experienced difficulties from the operation and his head swelled from fluid that had collected above the skull. Doctors had to perform another surgery, placing a shunt in Cameron’s head. The mechanism acts as an “internal sub-pump,” Merri said, draining excess fluid into Cameron’s stomach through a coiled tube that will extend as he grows.

Last April, Cameron’s doctors told the Browns more fluid had collected causing a subdural hematoma — a rapidly clotting blood collection between the skull and brain, which effectively had shifted the hemispheres of Cameron’s brain. When physicians tried to assure them the problem was common after the type of Cameron’s last operation, the Browns found it difficult to not see the third surgery in a year as a “disaster.”

While the operation was successful, doctors noticed two cysts where the tumor had been removed. Focusing on Cameron’s fluid management, they opted to leave them alone.

Merri knew her family’s journey was far from over.

On looking at Cameron’s scars, one Children’s Hospital doctor remarked Cameron had undergone “heroic surgery,” Merri said.

What little relief the Browns experienced proved fleeting. The tumor had returned. In June, doctors at Children’s Hospital found two cysts, which had grown from stray microscopic cells, during an MRI. Another two cysts were discovered in July. Though the type of tumor, a craniopharyngioma, is classified as benign, it can “act cancerous” with aggressive growth, Merri said.

Doctors prescribed radiation to shrink and deactivate the tumors, but such treatment carries high risk for patients as young as Cameron. Typical radiation destroys healthy brain cells. For those three to six years old, the treatment can cause neuro-cognitive impairments like loss of intelligence.

Merri was devastated at the thought of her “extremely bright, loving, polite and heroic” son losing IQ points.

“I felt like something was being taken away from him,” she said. “I felt like part of him would be dying.”

The Browns’ outlook changed after speaking with a physicist at neighboring Hospital of Philadelphia, who told them about proton beam radiation. The treatment, first developed for medical application in 2001, theoretically reduces the risks. Proton beam radiation may destroy less healthy tissue than the traditional method because the radiation stops at the site of the tumor, instead of continuing on an exit path through the rest of the brain, she said.

Still in its medical infancy, the method has not been extensively studied, but Cameron’s doctor recommended it after attending a medical conference on radiation in Boston.

“It’s all theory,” Merri said. “There’s no history. But it’s worth it if we can cut the risk by a quarter.”

Privacy provisions in the Health Insurance Portability and Accountability Act, passed by Congress in 1996, have complicated doctors’ abilities to perform studies, she said, recalling information related by Cameron’s doctors.

The Browns have been told the new type of radiation treatment is at least as good as the traditional kind and at best offers reduced damage to healthy brain tissue, Merri said.

The future

Though the Browns have received authorization from their insurance company to receive care at an out-of-network facility, which Merri said involved a serious lobbying effort on the part of Cameron’s doctors, they aren’t sure the treatment will be covered. When Cameron was treated for the subdural hematoma last April, the insurance company initially refused to pay.

The trip has also created a considerable financial hardship for Merri, a graphic designer for Temple University’s publications department, and Drew, manager of the Philadelphia Water Department’s public education programs.

Merri lost six months of work last year, and will lose another six weeks while in Boston for Cameron’s treatment. As an outside contractor, she will not be paid for that time.

Christ Ascension Lutheran Church has already started a collection to help with the Browns’ travel expenses.

The initial anger and despair the Browns felt at Cameron’s diagnosis has faded. “At first we asked, ‘Why Cameron? Why us?’ It’s grown into, ‘There must be a reason.’ We look at this as a journey.”

“This has changed the course of our family, for better, for worse,” Merri said.

After spending three weeks in Children’s Hospital for Cameron’s first operation, she witnessed children suffering from many different diseases. That experience has heightened her awareness and afforded her a sense of blessing. “We honestly feel lucky,” Merri said, recalling her son’s hospital stay.

With the proton beam radiation, Cameron will reach the safe limit for accumulated radiation, Drew said. With the exception of a few future alternatives, the six-week treatment is the last option available to destroy the tumor.

“You feel like you’re playing God with your child,” she said. “It’s horrible, but you do it. Doctors can’t open up his head every year.”

Speaking on a cell phone from Boston, Merri sits on a park bench across from the hospital on the Charles River. After an 18-month rollercoaster, she recounts the experience, her voice pained when conversation turns to Cameron’s suffering. She emphasizes the importance of listening to instincts, and regrets not demanding a brain scan six months earlier.

“As a parent, don’t let people tell you you’re wrong if you have a gut feeling,” Merri said. “Parents must be advocates for their children.”