Wednesday, July 27, 2005
11-year-old boy, family dig in against rare form of cancer
Wednesday, July 27, 2005
By VINCE DEVLIN of the Missoulian
Barry Simon looks like a typical 11-year-old boy but for the fact that he needs a bone marrow transplant soon just to stay alive. Through the tireless efforts of his mother, Cindy Wamsley, left, and sister Brittany, and the good will of the Missoula community, they hope to raise enough money to pay for the operation.
Cindy Wamsley knows she is lucky she didn't lose her children once already.
But now the odds are heavily stacked against her and her youngest child.
He's an active boy. Would be entering the fifth grade at Paxson Elementary School. Loves football, bike riding, skateboarding, riding Jet Skis. If you've got a boat, he'll gladly latch onto a ski rope and be pulled behind it on whatever you've got that floats.
He just got back from a trip to California, where he had a great time. His oldest sister, Jamie, got married. He saw grandparents, aunts, uncles and cousins he hadn't seen in five years.
He is 11 years old. His name is Barry Simon.
In just a few days, he begins the fight of his life.
Fanconi anemia. It is a disease so rare that when he was diagnosed with it in February 2002, doctors told Barry's mother he was case No. 992.
"In the Northwest? The United States? I don't know," Cindy says.
A call to the International Fanconi Anemia Registry at Rockefeller University in New York City provides the answer:
"That would be in the world," said a spokesperson there. "It's that rare. There's a little over 1,000 in our registry now."
It's a genetic disease that leads to bone marrow failure, also known as aplastic anemia. Both parents must carry a defect in the same FA gene for a child to be born with the disease, and then it's a 1-in-4 chance.
But it's a one-in-a-million shot that any one person will even carry a defect in an FA gene, Cindy says. The odds of both parents carrying it in the same gene?
"I don't know," she says. "I guess that's why there's only 992 cases."
After Barry was diagnosed with Fanconi anemia, Cindy Wamsley went into a deep depression.
"I did not come out of my room for a month," she says. "I didn't comb my hair, I didn't eat, I didn't do anything except sleep. It was the only way I could find to avoid thinking about it."
But then, she says, "I came to my senses. I realized I was just wasting time. I was behaving like I had already lost him."
Today, she's on leave from her job with a local grocery store and spends every moment she can with Barry and daughter Brittany.
Brittany will stay behind, with the grandparents of one of her friends, in order to begin her freshman year at Hellgate High School when Wamsley takes Barry to Seattle in August for a bone marrow transplant.
If everything goes as well as can be hoped, Cindy and her son still won't be able to come home until February.
There is no cure for Fanconi anemia. The bone marrow transplant is the best hope for patients to gain a few years they otherwise wouldn't have, and even then, the average age they live to is 22. Patients develop a severe risk for all types of cancers, mostly from the shoulders up - be they brain tumors, skin cancers or cancer of the esophagus.
And the transplant carries enormous risks for Fanconi anemia patients.
Two out of five, Cindy has been told, die before the transplant while undergoing chemotherapy and radiation treatments to destroy the defective bone marrow. Two of the remaining three will die from complications, some of which are unique to Fanconi anemia patients, that ensue after the transplant.
Barry sits next to his mother, playing a game on his PlayStation 2, while Cindy clicks off these statistics. He is well aware of all this, and has been since the age of 8.
"I don't believe in lying to my children," Wamsley says.
And so Barry and Brittany know their mother's life is not a pretty story.
Cindy was a methamphetamine addict in Modesto, Calif., before she and the children moved to Missoula in 2000.
They stepped off a Greyhound bus with their suitcases and nothing else.
"I'd never even heard of Missoula," she says. "I was on meth and homeless. They (Brittany and Barry) remember living in the shelters. I needed a fresh start. I didn't know anyone here, so I knew I wouldn't be able to get my hands on anything."
Life in Modesto was bad, she says, and of her own making.
"The only things I didn't lose were my teeth and my kids, and I was lucky," Cindy goes on. "My teeth I can replace. My kids, I can't."
She says she's been clean since she and the kids got off the bus back in 2000.
"Brittany's more important than drugs," Cindy says. "Barry's more important. I'm more important."
"And I'm proud of her," says Brittany, giving her mother a hug.
"So am I," says Barry.
Brittany and Barry's biological father lives in California. He makes no child support payments, Cindy says, and has had no contact with his children in years.
After Barry was diagnosed with Fanconi anemia, she tracked down the biological father and asked him to be tested to see if he might be a compatible bone marrow donor for his son.
"I even offered to pay for it," Cindy says.
He turned her down.
"Richard Wamsley is our dad," Brittany says of the stepfather who raised them. Although he and Cindy have been separated since January, Richard Wamsley remains active in the children's lives.
He's from Missoula, and he's the one who brought Cindy and the kids here.
"He loves his son and daughter," Cindy says.
She and the children now live in public housing, in a small apartment.
It's a step up from their early years in Missoula, when they parked an old motor home in parking lots or vacant lots, until they were run off.
"I know I messed up in the past," Cindy says. "All I can do is live my life right now and hope my children learn from my mistakes in the past."
It was last month. The girl was playing catch with her older sister. The ball got away from her, bounced across the street.
Seven-year-old Kayla Tyler fetched it and started back. She spied a truck and stepped back - but not far enough.
The truck's mirror slammed into her head.
The death of her niece, of Barry's cousin, gives Cindy Wamsley even more appreciation of the time she has with her son.
Kayla, who lived in Modesto and was the daughter of Cindy's younger sister, was lost in the time it takes to snap a finger.
"Kayla died so suddenly," Cindy says. "It made me so grateful that I still have Barry. I mean, I'm almost going, 'Yea! We get to go have a bone marrow transplant!' "
They put it off as long as they could, as long as his blood counts were fairly good and Barry felt relatively well.
"To see him, he doesn't look sick," Cindy says. "We decided, since the transplant carries such risks, to wait while there was still quality of life for him."
But lately, he's been tiring easily.
"It used to be us telling him to slow down and wait," says his sister. "But now it's the opposite - he's the one telling us to slow down."
Barry gets "every cold there is," his mother says, adding he missed 45 days of school last year.
He's becoming dependent on transfusions.
The disease is taking its toll. Without a bone marrow transplant, Cindy says, the life expectancy for someone born with Fanconi anemia is 12 to 14 years.
The good news is, after striking out for a match inside the family, an unrelated and anonymous donor who matches all 10 criteria for a transplant was found in what Cindy describes as a "worldwide search."
"They poked everyone in the world?" Barry asks.
"Well, no," Cindy says. "But probably thousands and thousands."
"Did they cry?" Barry asks with a grin.
Barry will enter the hospital in Seattle on Aug. 23. The dangerous radiation and chemotherapy begin Sept. 13.
There's no telling how long he'll be hospitalized after the transplant, and even after he's released, he'll have to remain within 10 minutes of the hospital for 3 1/2 months.
The slightest infection can be deadly, and the Ronald McDonald House - with families coming and going - is not equipped to provide a sterile enough shelter.
Cindy says she won't leave Barry's side as long as he's in the hospital, even if it means sleeping on the floor.
Once out, the plan is to stay in the Pete Gross House, a 70-unit apartment building near the hospital set up for cancer patients and their families.
Gross, who died of cancer, was the voice of the Seattle Seahawks for 17 years. His family established the house in his name. The rents are expensive, even to Missoulians - between $1,135 and $1,290 a month for the smallest units, studio apartments, which is where Cindy and Barry will stay - but a bargain in the area.
Doctors put Cindy in touch with a family whose daughter has gone through the same procedure. They told her they were in Seattle for seven months, and living expenses cost them $23,000 - a daunting total for a single mother living in public housing, who had to keep from touching her tax return in order to have enough money to drive Barry back to California this summer to attend his sister's wedding and see his family before the transplant.
About 30 local businesses let Cindy put out donation jars, and $5,000 has been collected for Barry's medical payment and expense trust.
They put out a jar at a Paxson sock hop, and Barry's grade-school classmates ponied up $100 of it in one night.
"Missoula is amazing to me," Cindy says. "Modesto wasn't anything like this. We raise $5,000 just in jars? I mean, I know I'm not the only person with a sick kid. I so appreciate what complete strangers have given to us."
They're hoping for a little more help on Saturday, at a benefit at the Town & Country Lounge.
They were driving back from a trip to the lake earlier this month. Kayla's death was on everyone's mind.
Barry turned to his mother and asked, "What if I don't make it?"
It's the first time he'd ever broached the subject, Cindy says.
"I turned up the radio. I didn't know what to tell him," Cindy says. "Then I turned it down and said, 'If you don't make it, you get to be with Kayla in heaven.' "
Cindy struggles to get through this. She knows the odds, and the best-case scenario - that Barry lives into his 20s - doesn't seem like much.
But she also knows the worst-case scenario.
"We go to Seattle together," she says softly. "And I come home alone."
The other possibility suddenly is worth more than anything in the world.
"The transplant takes," she says, excited now. "He lives to be 22, and the longer he lives, the better the chances they'll find a cure, or more ways to prolong his life."
Twenty-two is an average. Some live longer, even into their 30s.
Yes, it's a long shot.
They're taking it.
They're hoping you'll help them out.
Reporter Vince Devlin can be reached at 523-5260 or at email@example.com
How to help
Want to help Barry Simon and his family with their upcoming expenses in Seattle? An event with food, music and a live auction to raise funds starts at noon Saturday at the Town & Country Lounge, 1616 S. Third St. W.
You can donate directly to Barry's medical payment and expense trust at Wells Fargo Bank, 1800 S. Russell St., to account No. 8249013395.
They'd also love to have more items donated for the auction. To do so, contact the T&C Lounge or Barry's mother, Cindy Wamsley (218-9911).