Thursday, September 06, 2007

Mom told me the other day that one of the kids at Georgetown who we know had died. His name was Casey and his life was really hard. He lost his parents and his sister. I think his mom and his sister had the same kind of cancer he had. My friend Hugh and I bought him a computer last year 'cause he really wanted one. Casey had just been to the Harry Potter party. I thought it was so good that he was there. I can't believe he is dead now.

We also bought Barry Simon a computer for his birthday. I have a picture of him here along with the pictures of you and Mom and Jack that are next to my desk. His mom sent it to me.

September 2, 2007

Barry Simon Coming Home
By VINCE DEVLIN of the Missoulian

He's fought for so long. Been through so much. Suffered more pain in two years than most people will endure in a lifetime.

It's time, his mother says through her tears.

Barry Simon is coming home.

The 13-year-old will board a private plane in Seattle Wednesday with his mother, Cindy Wamsley, and sister Brittany.

He's coming home, to Missoula, probably to die.

“He's done,” Wamsley said softly over the phone Friday. “He's so tired. Nothing they're doing is working. His body is just killing itself.”

His doctors have told Wamsley her son, who was diagnosed with the rare and often fatal disease called Fanconi anemia at the age of 11, is not likely to live to see 2008.

“He wants to come home,” Wamsley said. “He wants to be in Montana.”

Simon understands what's happening, his mother and sister said.

“He doesn't want to talk about it,” Brittany said. “He doesn't let us know what's wrong. But he's worried what my mom and I will do without him.”

Simon was in the room Friday morning, when all nine of his attending physicians huddled with the family for two hours. The decision to forgo another transplant and return to Missoula had already been made, and the doctors talked about what to expect once they're home.

“He has no immune system left,” Wamsley said. “One little infection will kill him. But they said it'll most likely be kidney failure. They said it's a very peaceful way to go. Your kidneys put out a poison that just puts you to sleep.”

Wamsley was scrambling to find someone who could drive a U-Haul carrying their belongings and towing her car from Seattle to Missoula - she has to be on the plane with Barry - and fretting about getting back into their apartment. Sewage backed up in the apartment in June, damaging many of their belongings and forcing Wamsley to box up and store most everything else they had left behind.

The five days spent doing that was the only time Wamsley and her children have been back to Missoula since they left for Seattle in August 2005 for Simon to undergo a bone marrow transplant.

Angel Flight West, a group of private pilots who donate their planes and time to fly people with medical and other compelling needs, got them to and from Missoula in June, and may bring them home Wednesday. But Missoula Mayor John Engen's office was attempting to line up a local private jet to make the trip faster and more comfortable, Wamsley said.

Over the past two years, many western Montanans responded to Wamsley's requests for cards and letters to bolster her son as he fought the disease. The walls of his hospital rooms have been plastered with the correspondence, and Wamsley has said she could fill storage sheds with the thousands of pieces of mail he's received.

A handful of people have written faithfully for two years, and one woman has mailed something every single day.

Many may have been moved to write simply because of the astronomical bad luck it takes to come down with Fanconi anemia. There's a one-in-a-million chance any one person will carry the defect in an FA gene that causes the disease, and the only way for a child to get it is for both parents to carry the same defect. Even then, three out of four children never develop symptoms.

Too, they may have responded because of the family's story. Wamsley is a former methamphetamine addict who got off the drug by putting herself and her two children on a bus from California to Missoula, where she knew no one - and knew no one who could supply her.

She's been clean since, rebuilt her life and her family's, only to see her son go from an active 10-year-old to an 11-year-old who had trouble finding the energy to ride his bicycle.

The diagnosis of Fanconi anemia led to the transplant, necessary for anyone to have a chance to survive.

Since, it's been a roller-coaster ride. Simon was given the OK to return home more than once, only to have infections cancel the trips. At one point, her son was doing well enough that Wamsley thought he'd beaten the odds.

“Barry's going to be 13 on March 30, and I didn't even think he'd see 12,” she said back then. “He's going to be 14, 15. He's going to drive. He's going to get married some day. I believe it in my heart.”

But every good spell was followed by worse ones.

When he finally did make it back for five days on the hastily arranged June trip, Wamsley described some of what her son had been through since the transplant.

“He's been hospitalized 19 times since his transplant,” she said then. “He's been in I.C.U., he's been in diapers, he's been in a wheelchair, he's been on oxygen, he's had a fungus in his lungs, he's had infection after infection. It's been horrific.”

Doctors knew then the boy would not survive without going through another transplant, but his condition now is much worse than it was two years ago.

“He's sleeping 22 hours a day,” Wamsley said. “He lost six pounds in four days. He's fought for so long, and he is so tired. If I'm going to lose him this year, how can I put him through another procedure and surgery?”

Brittany has been amazing through it all, Wamsley said.

“She's so strong, she's been so uplifting to Barry,” her mother said. “She doesn't cry until she's alone in the shower.”

“I want his last memories to be happy ones,” Brittany said. “I try not to fight with Barry or argue with him. I just want to keep him laughing and smiling while he's awake.”

When he is awake, Barry talks about learning how to drive, going to high school - the things other boys his age would be talking about, Wamsley said. He wants to get a parrot when he gets back to Missoula, and Mayor Engen has promised to take him shopping for one.

“God put him here for a reason,” his mother said. “His journey in life is about completed. He's touched so many lives, and so many people have touched ours.”

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