Monday, September 24, 2007
You know how I've been talking lately about very special people. Barry and his mom are incredible.
Last goodbye: After two years in Seattle, Barry Simon comes home to die
By VINCE DEVLIN of the Missoulian
Don't be afraid. He's not.
Thirteen-year-old Barry Simon is dying, and he knows it.
But he's happy - happy to be home in Missoula after two grueling years of medical treatment in Seattle. Happy both his sisters are with him. Happy his days will no longer be spent getting the blood transfusions that have helped keep him alive, happy there will be no more poking and prodding of his bruised and battered body.
He is happy to be done with hospitals.
Simon's mother, Cindy Wamsley, says doctors have told her it's possible Barry may not live to see October.
"He's been in hell long enough," Wamsley says softly. "It's time for him to go to heaven."
They stopped the transfusions two weeks ago. On Monday, they took him off all but a handful of the 30-plus medications he was taking daily.
Hospice volunteers arrived in the family's small Missoula apartment Tuesday to begin helping Barry, his mother and his two sisters through the final days.
Now, the friends he hasn't seen in two years, his old teachers, the people who have faithfully written him while he was in Seattle, can help too.
Simon wants to see them before he dies.
Don't worry about it being awkward. He knows he's dying, you know he's dying, so what's the point in talking about it?
No, he'd rather show you his new ferret, which his mother named Sir Lancelot but Simon renamed "Sure Sleeps a Lot." Maybe watch a movie, or play a game. Have some fun. He doesn't want you to come say goodbye, he wants you to come say hello.
Don't be afraid.
You've probably got a better chance of winning back-to-back Powerball jackpots than you do of coming down with Fanconi anemia, the rare genetic disease that is killing Barry Simon.
Only one in a million people carry the defect in a gene that causes Fanconi anemia and could be passed on to a child, and the only way to get it is for both your parents to carry the same defect. What are the odds against that?
Astronomical. Even if, against all odds, both parents carry the defect, there's still a 75 percent chance a child won't come down with the disease. Barry's sister Brittany, who shares the same biological father, is a healthy teenager.
But Barry went from being an energetic 7-year-old to a lethargic 8-year-old, and was diagnosed with Fanconi anemia in 2002. There is no cure, but a bone marrow transplant can prolong a patient's life into their 20s or, if they're lucky, even their 30s.
It can also lead to deadly complications. Since Barry simply tired easily back when he was first diagnosed, Wamsley asked doctors to postpone a transplant as long as it was safe to do so.
For three years, they did.
In 2005, they said it was time. Wamsley took her son to Seattle Children's Hospital for the transplant.
If things went as hoped, Barry and his mother would have been in Seattle for just over three months. They wound up stuck there for 14 months before doctors said Simon was well enough to return home in October of 2006.
By then, Wamsley was committed to the medical "dream team," as she calls it, in Seattle that had helped Barry fight off countless infections, several of which had put him at death's door. Against her son's wishes, she made the decision to keep him in Seattle.
That's where he could receive the best medical care if anything went wrong, she said at the time. She was going to bring Barry back to Missoula for an extended visit, but Seattle is where they would live.
"Missoula is home to him," Wamsley says. "Seattle didn't feel like home, and he was very sad, but it felt safe to me."
The Missoula visit didn't come off. Ten days later, a staph infection put Simon back in the hospital, and Wamsley knew Seattle had been the right decision.
Barry takes a nap on the living room couch at his Missoula home while his mother, Cindy Wamsley, sits close by. "He has been in hell long enough," says Wamsley. "It's time for him to go to heaven."
Photo by LINDA THOMPSON/Missoulian
Has she made the right decision now?
Of course she has. Barry has been through so much - hospitalized 20-some times since the transplant with infection after infection, sometimes landing in the intensive care unit with problems such as a fungus in his lungs, near death more than once, his weight doubling at one point because of the medications he was on, so weak at times he was confined to a wheelchair and forced to wear diapers, monthly transfusions that became weekly and, at the end, daily.
He's just not getting better, and the only possible way to keep him alive would be to start all over again with another transplant, this time with Barry in much weaker condition, and put him through it all again.
"He wanted to be done quite a long time ago," Wamsley says. "I wouldn't let him, but it's time now. It's past time. It's his body, it's his disease."
The boy has been in on every discussion, and understands that as his organs shut down, it is most likely kidney failure that will kill him.
But he's had some of his best days since the decision to stop treatment was reached.
"He's more alive now, and happier than I've seen him in two years," Wamsley says. "To me, that just confirms that this was the right thing to do. He's got my blessing to go now in God's time."
Wrapped in a blanket, Barry laughs at an Adam Sandler movie while his mother, sitting on the floor next to him, talks about her son's pending funeral. She wants people to wear blue or green, because those are Barry's favorite colors. She wants an open-casket funeral, but wants his body to be cremated after the service.
The conversation doesn't seem to bother the 13-year-old whose funeral is being planned in front of him.
"I don't care," he says when asked. "I'm OK."
"He wanted to know what cremation meant," says Kristy Gordon of Hospice of Missoula when the subject was broached a day earlier.
"Barry wants to be buried, and I didn't have the right words for him not to be afraid of cremation," Wamsley says. "I want to be able to put his ashes in my backpack and take him to the mall with me. His stepfather wants some ashes to keep. His sisters want some so he's always with them. Hospice explained it perfectly."
Black sheets and pillowcases. So as the end comes, and Barry bleeds out his nose or knuckles (which he's been doing lately) or anywhere else, it won't carry the same impact that red blood on white sheets and pillowcases would.
It's one of the tricks of the trade, Hospice knows, and Barry has taken it a step farther.
He wants his whole bedroom painted black.
No, it's a party.
If you come to visit Barry in the coming days, be prepared to run a paintbrush down the wall of his room.
"Barry wants it black," Wamsley says. "He figures it will help him go to sleep easier. I don't say no to my boy very often anymore, and if he wants his bedroom painted black, it's fine with me. C'mon, bring a paintbrush and a casserole. I'll repaint it white after he's gone."
It will be hard to imagine she won't have help with either color. Hundreds of western Montanans responded to her pleas to write Barry during the last two years, and Wamsley credits those cards and letters with keeping her son fighting during his toughest times in Seattle.
"I got buckets-full of mail," Barry says. "Thousands of letters. It was overflowing."
"O.G.B." - someone who called herself "Old Grandma Barbara" - has written him virtually every day for two years. A couple named Mr. and Mrs. Russ Van Tine have mailed him a card and a $5 allowance once a week since the ordeal began.
These are just some of the people Barry wants to see now, along with his old friends and teachers.
"Mrs. Reschke and Ms. Smith," he says. "Madeline and Melissa. Colin, Cheyenne, Justice, Quin. Molly, my big sister. This girl (Brea, of Clinton) who wrote to me in Seattle. There are so many, and I can't remember everybody's name."
Molly was from Big Brothers Big Sisters. "It takes forever to get a Big Brother," Wamsley says, "and because of Barry's condition, they gave him a Big Sister so he didn't have to wait."
There may not be much time left. The closer it gets to the end, Gordon says, the harder it is to predict when it will come. Jamie, his oldest sister who lives in the Sacramento area, has given up her last two Thanksgivings with her new husband to be with Barry in Seattle, and is in Missoula now. Brittany, his other sister and a student at Big Sky High School, laughs with and teases her kid brother endlessly.
"Brittany refuses to be anything but positive around Barry," Wamsley says. "She only cries when she's alone in the shower. Sometimes she takes five or six showers a day. She's been the best big sister anyone could have."
Whether it was the incredible bad luck it took to come down with Fanconi anemia, or his family's story - Cindy Wamsley, a former methamphetamine addict, brought herself and her children to Missoula by bus from California in 2000, where she knew no one who could sell drugs to her, in order to break herself of the habit - people responded.
University of Montana basketball coach Wayne Tinkle, who promised Barry a party when he got home from Seattle, was there to greet him when Barry came back to Missoula for the first time since his 2005 transplant earlier this summer on a hastily arranged trip (sewage had backed up in Wamsley's apartment).
Mayor John Engen, who had promised Barry a tour of the city once he beat the disease, took him ferret shopping when Barry arrived home for the final time earlier this month.
"I saw a woman walking around with a ferret on her shoulder in Seattle," Barry explains, "and I wanted one ever since. They're cute and cuddly."
There were no ferrets for sale in Missoula at the time - Engen and his wife treated Barry to a day on the town after ferret shopping failed to come up with one - but a woman in Lolo, named April, located a young ferret for Barry in Coeur d'Alene, Idaho, and drove over and bought it a week ago Saturday.
She delivered it at 11 o'clock that night.
"I love how he sleeps," Barry says of Sure Sleeps a Lot. "He sleeps on his back with his paws in the air. It looks like he's dead."
Don't be uncomfortable with a dying boy talking about how his new ferret looks dead when he's asleep. Don't cringe at the thought of the youngster painting the bedroom he will die in black.
If you knew him before he got sick, if you have written to him since, stop by and say hi to Barry Simon.
Don't be afraid. Be happy you have the chance to.
Reporter Vince Devlin can be reached at 1-800-366-7186 or at firstname.lastname@example.org.
Come say hello
Barry Simon would love to see the people who have been important to him in his short life - old friends, classmates and teachers from his days at Franklin and Paxson schools, as well as people who have faithfully written to him during the two years he spent in Seattle battling Fanconi anemia. The family is back home, and lives at 933 S. Fourth St. W., Apartment B, in Missoula. Contact his mother, Cindy Wamsley, at 493-0002.