Warrenton boy smiles in a fight for his life

His once long brown surfer 'do was gone and there were burn marks on several parts of his head.

Eight-year-old Warrenton resident Matthew Costis had just gone through six weeks of radiation treatment and is in the fight of his life against an extremely rare form of brain cancer called glioblastoma multiforme.

Yet minutes before another surgery at Children's Hospital in Washington, D.C., on May 2, he was telling jokes.

"Why is milk the fastest thing in the world?" Matthew asked one of a parade of doctors before the hour-long surgery that would allow him to take chemotherapy intravenously.

Looking a bit surprised, the doctor looked back up from his clipboard at Matthew and made him repeat the ques-tion.

"I don't know why," the doctor said finally.

"Because it's pasteurized before you can see it," giggled Matthew.

Parents Tom Costis, a teacher and former track and cross country coach at Stonewall Jackson High School, and Priscilla Costis just grinned.

Matthew's Q&A may have been compensation for being nervous, Tom said. In fact, Matthew admitted to his folks that he was a bit anxious that morning.

But it's also not much different than how he normally acts. Relating to adults has never been a problem, said both parents.

After his first surgery, Matthew wasn't watching cartoons. Instead, he had tuned to CNN to see who won the Virginia presidential primary.

"He's an old man in a young body" laughed his maternal grandmother, Cherry Costis. "He's amazing to me."

"The reaction people have after meeting with Matthew is 'did I just have a full conversation with a child?' " added Priscilla, emphasizing the word "child."

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BAD NEWS KEEPS COMING

The May 2 surgery was supposed to just take less than an hour, but 90 minutes went by before the parents received any word.

When the surgeon called Matthew's parents from the cheery, colorful lobby into a meeting behind closed doors, Priscilla knew it was bad news.

"I knew something was wrong, it was taking too long," said Priscilla with a concerned look on her face.

The news was tachycardia, or the rapid beating of the heart. Matthew's pulse rate had jumped to 200, which forced doctors to medicate him after the surgery.

His parents had decided that if the surgery went well, Matthew would be going back home that day and maybe even attend a party with his friends that night.

And the day was off to a promising start, with Matthew having gone under more than hour earlier than scheduled.

But things changed once again, frustrating an already exasperated couple. Matthew was going to have an EKG and be monitored overnight.

After another anxious evening in the hospital, Matthew learned he has yet another ailment. It's called Wolff-Parkinson-White syndrome and it's a rare congenital heart disorder involving irregularities in the electrical system of the heart.

In individuals with WPW syndrome, an abnormal alternate electrical pathway exists between the atrium and the ventricle, resulting in abnor-mal heartbeat rhythms and faster than normal heartbeats.

"If there is a 2 percent chance of it happening, it happens," said Tom after first learning the bad news.

A GLOOMY OUTLOOK

Actually, 2 percent is too liberal a number for what has happened to this outgoing, precocious young boy.

Despite being the most prevalent form of primary brain tumor, GBMs occur in only two to three per 100,000 people in Europe and North

America, according to experts. And its survival rate is not much better than 2 percent.

The best reported survival rates for radically removed tumors treated with radiation therapy approaches 25 percent at five years, according to Children's Hospital of Boston.

Matthew first started feeling poorly in early February. His neck was aching, he was losing his balance easily and was vomiting consistently for several mornings. After first thinking it was influenza, doctors discovered and on Feb. 12 removed a tumor from his brain during a nerve-wracking six-hour procedure in the middle of the night.

The surgery was initially believed to have been successful. However, less than two weeks later, things got bad again.

Two lesions were spotted in his temporal lobes and on Feb. 20 Matthew was diagnosed with GBM.

Six weeks of intensive radiation treatment lead to a precipitous drop in weight and one scary evening when Matthew had to be flown to Children's after reoccurring seizures.

Priscilla said Matthew was acting funny the night it happened. In the middle of the night, his parents discovered the light on in the hall bathroom and Matthew inside exhibiting pre-seizure symptoms like staring off into space and not answering simple questions.

After the seizures, Matthew seemed to improve and his spirits were high on May 2, despite being nervous.

"He was singing in the car the whole way up to the hospital," said Priscilla.

MOTHER'S DAY

"This rocks," Matthew said. "This rocks hard." A maniacal giggle followed, which often is followed by contagious laughter.

It's Mother's Day and Matthew is relishing the beating he is putting on his father in a connect-the-dots game at Olive Garden on Va. 234 in Prince William County.

Matthew is less than two weeks away from his first chemotherapy injection and he has been living it up. The week before Mother's Day, Matthew and his family went on a planned getaway to Myrtle Beach, S.C., sponsored by the charity Andy's Special Friends. Through family connections, Matthew was able to attend the once-a-year, week-long camp for children with cancer.

He received spending money from the organization, went horseback riding and even took in a Renaissance festival where knights duel and the audience eats with their hands and stuffs themselves silly.

He was particularly impressed with the festival, bringing home a sword and shield from his mythical conquests.

But with Matthew, reality sets in quickly. During Mother's Day dinner, father and son had to go back to the bathroom just moments after Matthew dove into his plate of spaghetti and meatballs.

Matthew returned to the table, picking at his food slowly. Keeping food down has been a constant battle. In fact, the day before, Matthew threw up after eating some pizza.

But that didn't deter him from getting right "back in the saddle," wanting more pizza, said uncle Mark Costis, Tom's fraternal twin.

Since moving in with his brother's family, Mark, along with many other family members, have helped care for and get to know Matthew a little better.

Mark said Matthew's dynamic personality is such that he can make a bad movie tolerable just by being in the same theater. In fact, Matthew's excitable reactions to scenes in the action classic "Spider-Man" four years ago resulted in him and his father getting booted from the theater.

Tom said Matthew didn't understand why they were being kicked out and that Matthew wasn't yelling or making noise during inappropriate times.

"He was unfazed but he was asking me, 'Why are we leaving, the movie is still on,' " Tom laughed.

ONE BIG, HAPPY FAMILY

Since Matthew was diagnosed with cancer, the Costis family has received help from not just their respective fami-lies, but from all over the world.

More than $10,000 has been sent to the Costis family, thanks to Matthew's paternal grandparents' connections with the Free Masons and some of their associated organizations. Cherry Costis was en route to be promoted within the Order of Amaranth, a Masonic-affiliated women's organization founded in 1873, when she found out her grandson had cancer.

Instead of raising money to fight diabetes, one of the organizations' central missions, the Order of Amaranth decided that all the money raised that evening would go to the Costis family.

"The word spread through the Amaranth community and people kept sending checks to them," said Cherry, who estimated that nearly a check a day comes in the mail to help with Matthew's medical ex-penses.

Cherry said the first hospital bill alone was nearly $200,000.

Another huge help to the family has been the care and support provided by Tom's employer. Fellow special education teachers Ellen Hill, Pat Ives and Chris Bresnan and several other administrative staff have organized fundraising events for the Costis family throughout the spring.

They have hosted pancake breakfasts, a talent show, a kickball contest, bake sales and even created T-shirts with the slogan Caring For Costis.

As of May 29, the school had raised nearly $8,000 for the family. Tom said this financial support was vital because he relied not only on his salary but secondary income from tutoring and teaching night school.

GUTTING IT OUT

The chemotherapy has been tough on Matthew, who goes to the hospital every other week for treatment along with taking a pill for five days per month.

After the initial treatment, the vomiting had become fairly frequent again, said Vanessa Ortiz, Matthew's maternal aunt. On a recent trip to the mountains, Matthew mostly laid around and slept, said Vanessa.

On May 31, Matthew put on a brave face at the fundraising Caring for Costis 5K and 1-Mile Fun Run, held at Stonewall Jackson. Bundled up in a hooded sweatshirt, ballcap and sweatpants and sporting some nifty wrap-around shades, Matthew kicked off the race by blowing the honorary starter's whistle.

Yet the start was a painful reminder of Matthew's condition. He had to be helped out of his chair in order to start the race. And throughout the rest of the morning, Matthew was taken around in a wheelchair by family mem-bers.

The mega-watted smile so common to all who know Matthew was missing much of the morning, replaced by a look that he only gets when he's nauseous, said Tom. One of those grins came when he and his father thanked the crowd for coming out to the race.

With Tom assisting him with his speech, Matthew told his captive audience "to drink lots of water." The throng of people started to chuckle, which lit up the faces of both father and son.

That night, Matthew felt better while attending the American Cancer Society Relay for Life at Fauquier High School in Warrenton. Pushed by his maternal grandfather Albert Gutierrez, Matthew and his family made an lap around the track, honoring survivors of cancer and loved ones that have succumbed to the disease.

It was a busy and exhausting day for Matthew, said Vanessa. However, she said he was happy to be the "celebrity rock star" of both events.

Vanessa assists with daily blog updates on Matthew's condition for friends and family members and her two brothers -- Matthew's uncles -- spent an extended period of time away from their homes in Texas to assist with the family when Matthew was undergoing his radiation treatment.

EYEING THE FUTURE

A normal life may or may not be in the cards any time soon for the Costis family. Matthew's chemotherapy is scheduled to last at least six months and may last up to two years, said Tom.

Tom missed the remaining two-plus months of the 2007-08 school year to tend to Matthew but hopes to be back this fall, depending on Matthew's progress. And the ultimate goal is to get Matthew back to school at C.M. Brad-ley Elementary

School in Warrenton.

Currently the family is relying on a Fauquier County service that sends a teacher to Matthew's home on a regular basis. And while Matthew was already ahead of the curve before his illness, Tom worries whether he can handle a full day of school without having to rely on someone to get around.

This summer, the family hopes to get Matthew some limited physical therapy where he can build his strength back up. The normally skinny 4-foot-3 second-grader weighed just 52 pounds last week, but is showing signs of keeping his food down.

To take his mind off his ordeal, Matthew has been doing normal kid things. When he has the energy, he plays his Wii or works on his final school assignments. All the while, prayers are being offered all over the world for this dynamic youngster that many people have gotten to know through an amazing network of family, friends and chari-ties.

Of all the prescribed and over-the-counter pills that Matthew has been taking -- at one time, up to 15 -- love might be this kid's best medicine. One that he not only receives but gives in spades.

"My heart breaks around him," Cherry said. "You look at him and he smiles and tells you 'it's okay.' You can't come away from him without feeling uplifted and inspired."

"With all the people pulling for him, something good is going to happen," Tom said.

Staff writer Kipp Hanley can be reached at 703-369-5738.