I started this two weeks ago…

I am on the train up to New York. Mom and Joe are across the aisle and I am sitting next to Jack. I am looking at Mom, who is trying to sleep, and Joe is watching SpongeBob (Season 3) on Mom’s iPod. Joe is not letting Mom sleep. He keeps touching her and patting her. I feel bad for Mom, but Joe can’t help himself.

Two days ago Mom said, “Joe has been sick for 16 days.” She was definitely counting and definitely worried. He had a fever that just wouldn’t go away. I am of the “lightning can’t strike twice in the same place” school so I wasn’t as worried as Mom. I knew or was just wishing it was something that was taking a long time to go away – especially since Joe isn’t the type to necessarily lie around and let himself get better. He was pretty peppy even with 103 temperature.

He seems to be getting back to normal now. Jack caught a bit of what Joe had and I am trying my darndest not to get sick myself. Remember the time we all went up to New York and Mom was sick and you and Jack were sick and we were staying in the residence at Cornell Hospital. That was pretty miserable. Even though we are the cough-a-lot family freaking out everyone sitting near us, hopefully everyone will all be feeling better for this visit.

Mom’s up now. She only needs to nap for 15 minutes to feel good. I need at least a 3-hour nap or else I feel groggy.

Your bothers are “inconsistent communicators.” Most of the time they won’t engage in much of a conversation with me. And sometimes, infrequently, they just burst open and can’t stop talking. I never know which it is going to be. Ceaseless yapping or silence.

Nicely, and from out of nowhere, the other night Joe and I actually had a nice chat.

I don’t know how I got into it, but I told Joe all of my grandparent’s – your, Joe and Jack’s great-grandparents’ -- names. There was Grandma Bertie, or Bertha Goldberg; Grandpa Hymie, or Hyman Goldberg; Grandma Gus, or Augusta Baum – kinda like Augustus Gloop; and Grandpa Nat or Nathan Baum. I told Joe that I wanted to name each one of you Nat at some point or another. It started with you, but Mom said “no way.” I remember exactly where we were, driving down Old Georgetown Road past my nursery school (a church), when I brought it up. That name option lasted for maybe, I don’t know, less than a minute.

It was less to honor my grandfather, who I don’t remember all that well other than driving a Red Cross ambulance, and more because I like the name. Joe was definitely interested in the name because it is the nickname of the Washington National’s baseball team. He then said something that intrigued me. He said that we should have named him, “Senator.” He was talking about the old baseball team here – also nicknamed the Nats – but I was thinking how cool it would be to walk around and say, “Hi, I am Senator Goldberg,” like you were a United States Senator, one of those people who gets elected.

Joe thought a little more about it and argued that instead of “Joe,” we should have named him Ryan Zimmerman Goldberg or Alfonso Soriano Goldberg. I apologized to him for not having thought of that when he was born.

I told Joe about your great-grandparents and that I didn’t really know any of them. Gus and Nat were were Grandma Phyllis’ parents. Bertha and Hyman were Papa Teddy’s parents. I then thought it would have been funny if I called Grandpa Hymie, Papa Hyman – but that is funny just to me and high school boys.

Grandma Gus died when I was one – just like you dying when Joe was that age. I don’t remember ever knowing Grandpa Hymie. Grandpa Nat and Grandma Bertie were the ones who I remember seeing more than once. They all lived in a place in New York called Brooklyn. That is where I was born.

I have a picture of you, me and Grandma Bertie. I'll find it and put it here. Mom and we visited her once a long time ago. I may have told you how she gave me a can of soy beans when I was growing up. It was the only present I remember getting from her. She wasn’t what you would call a “warm” woman or grandmother. But she lived a long time. She was 99 when she died.

Over Thanksgiving in St. Michaels everyone (but me) talked about what we were thankful for. Here is a page that Joe did at school. He is learning to read and write. He is doing really great. I hope he is as smart as you and Jack.



At Thanksgiving dinner, Joe said he was thankful for being born, and Jack said he was too. Of course, that is that he was thankful for himself, Jack, being born, not for Joe being born. That would be too much to ask for from Jack, who still gets pretty annoyed at his annoying younger brother.

Jack then said something very quickly about how Mom and I were bummed out that when he was born he wasn’t a match for you. Mom and I looked at each other and a silent, “Where’d he get that from” look passed between us because we couldn’t figure out “Where he got that from,” and more importantly because it was totally untrue.
Mom took Jack aside at some point over the weekend to talk to him about this.

It is Saturday morning a week after I started writing to you. Now I am sitting watching Joe at a University of Maryland winter baseball camp. Mom and Jack brought Joe last night and I am with him today. We are in a big indoor practice bubble across the street from where I lived when I went to school here. My dorm was called Denton. I am remembering when you and I came here late one night after your doctor appointment in Baltimore. We went to the Student Union to get a basketball jersey but they were closed. You were a big Juan Dixon fan. We were so bummed.

Joe and I sat on a bench next to this kid named Dylan and his mom while we were waiting for the camp to start. It is pretty cold even though we are indoors, so I suggested to Joe that he and Dylan run all the way to the end of the field and back to warm up. Dylan said he didn’t want to. Joe then looked at me and said with a half-smile, “Dylan came in last yesterday.” And then he repeated it and smiled at me again.

I don’t know why he does stuff like that. He is basically a good kid and a good hearted kid but this is something that he needs to work on. He is 6 and talks “smack!”

I think talking smack and talking trash are different things. I need to look that up.

You know that it is okay to be competitive, but Joe feels like he needs to remind others that they aren’t as good as he is, whether it is the kids in his class, this guy Dylan or even Jack. Mom and I have talked to him about this a lot but he keeps doing it. Joe’s coaches repeat the same thing over and over about the proper stance for hitting or for being ready in the field. I guess we need to just keep saying the same thing about being nice to others and “worrying about him” over and over again. Repetition teaches the fundamentals.

I took Joe aside and said that while that Dylan may have “come in last,” it wasn’t a nice thing for Joe to say or bring up. I want Joe to be the kind of kid who helps other kids, not makes them feel bad.

A lot of it – at least today -- is my fault. I lied when I signed up Joe for camp. I said he was a year older than he is because you need to be 7-years old to go to the camp. Aside from doing what he loves, my thinking was that being with kids who are older, bigger and better; Joe may learn a little humility. He may have a 7-year old’s skills but he may not be “mature” enough otherwise. He has problems sitting still like the others listening to the coaches. Next year will be better.

I also know that a big part of what bugs me is that growing up I was Dylan. I was the kid coming in last.

When we’re done here I will say that to Joe and see if that helps. I'll tell you one thing -- if that is our biggest problem, we are doing okay.

We finally did find out what was wrong with Joe last month. He had pneumonia. Although he may have gotten better quicker if we knew earlier what was wrong with him, I know that in a way it was a good thing that we learned after he was getting better that it was pneumonia. Pneumonia, which I think is simply an infection that is in your lungs, is ultimately what killed you. Joe’s infection was mycoplasma, yours aspergillus.

Here are pictures of you and Jack the morning of the day you were admitted to the hospital for the first time with pneumonia.





I was here alone with you and Jack, while Mom was in New York doing IVF. You were complaining that your shoulder was hurting you (and it was your shoulder that what was bothering you again in Minnesota at the end when you had pneumonia but no-one could figure out what was wrong), and I finally took you down to Georgetown in the evening. I wonder who came over to watch Jack.

For a while it looked pretty bad for you. Mom had to choose between coming back here and seeing you before you died or staying in New York to keep trying to have a baby who would save your life. Although Mom is incredibly strong, no-one should ever have to deal with those kinds of decisions. Fortunately, you got better and Mom was able to stay in New York. Our life was pretty dramatic at times.

Thanksgiving was great. It was us and Nana and Papa. Just like when you were just born.

We were all out at St. Michaels. Uncle Andrew, Aunt Tracy, Sam and Emma came out as did all of the Mintz's. We had a nice football game and all of the kids ran around and had a blast. Here are some pictures.



As you can see from the deer on the bumper, some on the Eastern Shore didn't have such a great Thanksgiving weekend.

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.

He's not.

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.

Morbid?

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.

He is.

Reporter Vince Devlin can be reached at 1-800-366-7186 or at vdevlin@missoulian.com.

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.

Here is some news on that boy Barry who was transplanted in Seattle. I talked to his mom a few times when we got him that computer for his birthday. I was wondering what happened to him. Reading this it is clear that it has been incredibly hard post-transplant, and he has more of the same ahead. But he is alive and that is what is important.

I will call his mom and say hello. I was just saying how hard it must be to have problems on top of having Fanconi anemia. It sounds like they've had more than their share.



Boy fighting rare disease making stop back in town

By VINCE DEVLIN of the Missoulian

It's not the homecoming he's dreamed of, but if Barry Simon has learned anything since he left Missoula in August 2005 as a very sick 11-year-old, it's to roll with the punches.

And so his first visit home in nearly two years after undergoing a bone marrow transplant in Seattle may not be the festive occasion he or his mother, Cindy Wamsley, had envisioned. It's a hastily arranged, last-minute trip made necessary by sewage that backed up in their Missoula apartment, damaging their belongings.

“The irony is he's coming home but he can't go home, because he doesn't have a home to go to,” Wamsley says. “It's not the homecoming I fantasized he'd have, not even close.”

There's been no time to set up anything with Mayor John Engen, who once promised Simon a tour of the city when he got back, or University of Montana basketball coach Wayne Tinkle, who had offered to throw Simon a welcome-home party. School's out, and Wamsley has no way to contact any of her son's friends from his Paxson School days.

When they deplane at Minuteman Aviation at Missoula International Airport on Wednesday between 1 and 2 p.m., the only person they expect to see is “O.G.B.” - she calls herself “Old Grandma Barbara,” and has faithfully written to Simon every day since he left for Seattle - who has offered to put the family up for a couple of nights during their five-day stay.

Wamsley, Barry and his sister Brittany will fly to Missoula and back to Seattle courtesy of Angel Flight West, a group of private pilots who donate their time, airplanes and fuel to transport people for medical and other compelling needs.

They'll be flying a young teenager - Simon turned 13 in March - who is still very sick, and in need of another transplant this fall, according to his mother. But he's feeling well enough right now to make the trip, unlike last fall, when a planned Thanksgiving homecoming fell through when Simon was readmitted to Children's Hospital with a staph infection.

Simon's story caught the attention of many western Montanans after he was diagnosed with Fanconi anemia, a rare genetic disease that leads to bone marrow failure.

Maybe it was his family background - Cindy is a former methamphetamine addict who quit, cold turkey, 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 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 a bicycle. Doctors eventually diagnosed Simon with the often fatal disease.

And maybe it was the nature of the disease itself. There's a one-in-a-million chance that any one person will carry the defect in an FA gene that causes Fanconi anemia, and the only way for a child to get it is for both parents to carry the same defect.

The odds of that happening are astronomical, and even then, there's a three-in-four chance any children born will still not come down with the disease.

But hundreds of western Montanans have responded with thousands of cards and letters for Simon over the last two years - enough to fill storage sheds, his mother says, and one reason she believes her son has beaten the odds so far.

Wamsley is making sure a few who have sent things regularly - such as “O.G.B.” and “Russ and Mrs. Russ,” who mail Simon a $5 allowance every week - will have a chance to finally meet the boy who has been at death's door too many times.

“He's been hospitalized 19 times since his transplant, 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,” Wamsley says. “It's been horrific. He doesn't want another transplant, because the first one was so difficult. But we're going to have to have a talk, because he'll die without another one.”

Her stepson, who checks on the Missoula apartment and picks up the mail about three times a week, discovered the sewage, which had entered all three bedrooms and was making its way down the hallway, according to Wamsley.

“It's pretty nasty, I understand,” she says.

All their belongings are now in a storage bin in the driveway and Simon himself will not be allowed into the apartment due to his fragile immune system.

“It's really disappointing, because one of the things Barry really wanted to do was go back to his actual home,” Wamsley says. The family has bounced around in Seattle for two years, and is back at the Pete Gross House, an apartment building specially set up for cancer patients, where they originally lived. They've also stayed in motel rooms, and were at the Ronald McDonald House in Seattle until the state of Montana deemed Wamsley a Washington resident.

“You can only stay at the Ronald McDonald House if you're from 100 miles away, and if they say you're a Seattle resident now, you can't stay there anymore,” Wamsley says.

Without a car to get around in, and unsure where they'll stay when the weekend arrives and “O.G.B.” has out-of-town visitors arriving, Wamsley says she still hopes to make her son's homecoming as special as possible.

She readily provided her cell phone number (see accompanying information at bottom of this story) and asked any of her two children's friends from their Missoula days to contact her.

“Nothing but good has come from putting our contact information in the paper,” Wamsley says. “The people of Missoula and western Montana have been amazing, and I truly do not believe Barry would still be fighting so hard if it weren't for them. You get to the point where you think you can't go on, but you do. They have given us all the strength to do that.”

Give a call

Were you a friend of Barry Simon when he lived in Missoula, or his sister Brittany? They'd love to see you while they're home through Monday. Contact their mother, Cindy Wamsley, on her cell phone at (206) 369-7176. If you'd like to send Barry a card or letter once he returns to Seattle next week, his address is 525 Minor Ave. N., Apt. 403, Seattle, WA 98109.

This is something I started writing to you before Thanksgiving but never finished. It has been hard to "post" things, especially pictures, and I have been incredibly busy.

I began this when I was on a train up to New York. I was meeting Jeffrey and David for some JewsRock business. They were going to do a show for XM and this channel, Radio Hanukkah, that I am helping put on the air. Those two guys are smart, interesting and great talkers so I know they will be really good on the radio.

When I was on the train I started to read a book that I had bought. It is actually a play and it is called Rabbit Hole. The play is very popular in New York. I don't know how I learned about it, but I got the play because it is about a mom and dad who lose a son.



I think it is important to read stuff like this. It makes me feel things and think about things. The things are you and you dying and how I am handling it. I think about if I am okay. I think about whether I am doing things right.

The mom and dad in the play aren't handling things very well. The mom seems to want to get rid of all traces of her little boy. She wants to move out of their house. That is so different from me and Mom. The father wants to save everything. There is one scene where the dad goes and watches a video of his son on the TV. There is a note at the beginning of the scene that says the dad should not cry. Funny thing is that I did just that when I read it.

The mom later erases the video - she says by mistake, but the dad thinks it is on purpose. Of course this is why I have put every video of you on DVDs and now on the computer.

The little boy in the play died because he was hit by a car when he was running after his dog. The woman that I hit with the minivan just after you died ran into the street chasing a dog. About a month ago I saw another woman get hit by a car that was driving right in front of me on the way home from work. I saw her and knew she was going to get hit. She just crumpled. I keep seeing it in my mind when I drive on that road.

I never told you about a roommate I had in college whose name was Scott. We lived together for just a semester. When we were in school he was involved in two separate accidents where he hit people with his car and they died. Neither were his fault. It was terrible.

One accident happened when a man walked out from between parked cars and Scott hit him. The guy who died had just come out of the house of his bride-to-be's family. They had been inside planning the wedding.

The second was on a street, Route One, right out in front of school. A car turned around - a U turn - in the middle of the street and Scott ran into it. The driver died. Scott disappeared for a while after that one, and I think he may have quit school for a while too. I remember that he was from outside of Baltimore and he was a really good golfer.

It didn't take long to read Rabbit Hole. I liked the play. I thought the mom and dad should just have another kid and they'd start getting better. Mom and I purposely didn't want to have any more kids because we didn't want anyone in the family who didn't know you. Maybe some people would think that is weird, but it made sense to us.



The man who wrote the play gave some instructions in the back for anyone who was going to direct or be in the play. He said that the actors shouldn't cry or mope around. He said there should be humor. I thought those were smart things to say.

About the same time I read Rabbit Hole, Mommy read a book called My Sister's Keeper. It was about a girl who was dying and was saved by a bone marrow transplant from her sister. The sister was born the way Adam Nash was born and how we were trying to have a brother or sister for you who could save your life.

The mom in the book really didn't care for the baby that was born to save her sister or her older son who was pretty much ignored. Mom said the book and mostly the mom wasn't very realistic. The characters were like cartoon characters, just good or bad and nothing in between. Real life can be very dramatic.



Mom read that book for her book group. Someone picked it and I don't think they had any idea Mom might have a personal connection to the story. I don't know if she has gone to the book group meeting for that book yet.

I know that reading this kind of stuff, doing Hope for Henry work and going to hospitals "keeps the wound open." I don't think we ever want to heal. I know I don't.

Had a perfect morning. We let Mom sleep really late. Jack watched cartoons and read the Sunday comics. Joe and I played on the couch under a blanket. It was nice. It was also the only way to keep Joe quiet. He continues to be/play really loud. I wish I had his energy. What I need to do is get up and get him out of the house so he can run around. He really is like a puppy.

I really appreciate any quiet moments with him. I ended up going upstairs to take a shower and he laid down on the bathroom floor with my clothes as a pillow and the towel as a blanket. We had a nice conversation as I took my shower. He is super cute.

When we went back downstairs I showed him this video of you. I took this video the day he was born. You were in the hospital at Georgetown and Mom was in the hospital down the road at Sibley. Before this clip of you is video of him being born. I showed that to him and he said "disgusting." He has an excellent vocabulary.

Joe smiled the whole time he watched you. He wanted to watch it over and over.

After I filmed you I filmed Jack doing the same thing --saying hello to his new brother. In the video Jack says he is going to take care of Joe, his new brother.

When I showed that to Joe this morning he said he wanted to make sure that I would show it to Jack. When I showed it to Jack later on today he said that he broke that promise to take care of Joe. I told him that he has plenty of time to make good. It isn't too late.

I have been having a lot of trouble getting pictures and video on here lately. Strange. I went back and put on a few pictures of Thanksgiving.

Henry TV!



This video doesn't look so good, but it helped me figure out a way to make them better. I will try to go back and fix all of the others, but it will take a lot of time.

The rest of the day was pretty great except the Redskins lost. After the game Joe, Jack and I went out and played football at Stoddert until it got too dark. We needed you out there. We always have to play two men on offense and one on defense. I try and get Jack to go easy on Joe but I have a sense that he would like to put a good lick on him if he had the chance. Just a little payback for Joe being an annoying little brother.

Jack, to his credit, does show great restraint, which means he doesn't wallop Joe. I wonder what it would be like if you were around.

Tonight a Maryland basketball game is on TV. You were such a big Juan Dixon fan. Hopefully they'll be that good again this year.

I got to let Mom sleep late and play football with the boys. If the Redskins had only won... and if Maryland were to win.... well, then I would have to put this day in the perfect category. Of course if you were here then it would be a dream.

Love you.

Aunt Jen, Uncle Dan, Hannah and Kasha all flew in on Uncle Dan's plane for Thanksgiving. We all went together to Papa Teddy's new house that he shares with Jeri for Thanksgiving dinner. It was very nice. We met Jeri's family.

On Friday morning we went into XM with a bunch of friends including Jake, and we recorded some stuff for the Radio Hanukkah channel. It was a lot of fun. Jake sang a song that he made up. Hopefully we can play it.



We then headed out to St. Michaels for the rest of the weekend. We just missed Aunt Abby and Uncle Andy and all your Cherner cousins. They were at Nana and Papa Sy's for Thanksgiving and then left for their house at the beach. Their house is going to be in a magazine. That should be neat. I will show you pictures whenever that happens. The good news is that Uncle Andrew and Aunt Tracey and Emma and Sam were there.



The weather was absolutely, positively perfect. Yesterday we went to Blackwater Wildlife Refuge, where you, Nana and I went together a few years back, and then today we played baseball and I tried to help Papa Sy and Uncle Andrew fix the end of the dock, which fell in the water in a storm.

At Blackwater we saw a bunch of bald eagles. Do you remember when we were there with Nana and there was a man who let us look through his big lens to see the bald eagle. This time it was a lot easier to see them. We saw a bunch of bald eagles flying high in the sky and also sitting on logs. The bald eagles fly really high while the turkey vultures are a lot lower in the sky.



There are 75 eagles who nest at Blackwater year round. In winter there are supposed to be 150. Maybe we'll go back later in the winter and look for more. I think everyone had a good time. It felt good to suggest something that everyone had fun doing.

We brought a lot of binoculars with us. Nana had a pair that she told us used to belong to her Uncle Sol.



Papa Sy explained to me that Uncle Sol fought in World War I. When he got home from the war he would spend some of his time at the racetrack. He loved horse racing. The binoculars we were using were the same ones he used to watch the horses at the track.



I looked a lot at your picture that hangs in the room were we sleep. It is the room next to the room with the bunk beds. You are wearing your PJs with the stars on them. Joe just got some flannel pajamas from Cousin Joshua. He looks so cute. It kills me.



I didn't look forward to coming back home.

Henry TV!



This is your first Thanksgiving. You were smaller than the turkey! This was taken eleven years ago today.

We were at Nana and Papa Sy's old house near Annapolis. That was the house they had before St. Michaels. It was the house where I asked Mom to marry me. Actually it was on the dock of that house.

You were just a month old.

Missoula boy too ill to return from Seattle

By VINCE DEVLIN of the Missoulian

Barry Simon's homecoming was delayed this week when a staph infection landed the Missoula boy back in Children's Hospital in Seattle.

The 12-year-old, who had received the OK from doctors to return home after 14 months in Seattle, will now have to spend Thanksgiving on the coast.


“Stuck again,” said his mother, Cindy Wamsley. “Barry is extremely disappointed. He so wanted to see all his friends.”

It is at least the 40th time Simon has had an infection interrupt his recovery from a bone marrow transplant made necessary by a rare disease called Fanconi anemia, according to his mother. But it reaffirmed her decision - opposed by Barry - to relocate to Seattle permanently after taking her son back to Missoula for a few weeks to see old friends - and to meet some of the new ones he knows only through the letters they've written him since his transplant.

“His sickness is so complicated, and things happen at the drop of a hat,” Wamsley said. To move home to Missoula would have meant frequent 400-mile round trips to Spokane for checkups with specialists, and turning to doctors with little or no experience with Fanconi anemia in times of emergencies.

“But we are coming home for a while,” Wamsley said. “We just don't know when now. We wanted to be there for Thanksgiving, because we have so much to be thankful for.”

Wamsley had already rented a storage shed in Seattle to store the belongings they've accumulated since they arrived in August 2005, and had the phone turned on back at their home in Missoula, when tests earlier this week showed Simon's glucose level had ballooned to four times what it should be.

They had planned to leave Thursday, but it will now be weeks before they can make the trip. Barry's 15-year-old sister Brittany, who stayed with relatives in California during the early months of her brother's hospitalization, has since moved to Seattle and will also return home for a few weeks when Barry's health allows.

Fanconi anemia is a genetic disease caused when both parents carry the same defect in an FA gene. There is a one-in-a-million chance that any one person will carry the defect, making the odds of both parents carrying it astronomical.

Simon attended Missoula's Paxson Elementary School before being diagnosed with the disease.

Reporter Vince Devlin can be reached at (406) 319-2117 or at vdevlin@missoulian.com

I have a lot to tell you. I didn't have Internet access at home for a while but now it is fixed. I need to tell you about Thanksgiving at the beach and a bunch of ther things.

Tonight is Hannukah and Saturday is the day you died and your Yarzheit is on my birthday. This isn't my favorite time of year.

Mom forwarded this today.

-----Original Message-----
From: JANET ZIEGLER [mailto:JZIEGLE1@FAIRVIEW.ORG]
Sent: Tuesday, November 30, 2004 10:45 AM
To: Strongin, Laurie
Subject: Re: Gift Delivery from Hope for Henry Foundation

Nov. 30, 2004

Dear Laurie,

I just wanted to thank you so very much for your incredible generosity to the children here. I'm so impressed by and appreciative of the thoughtfulness, energy and determination that you've brought to this amazing project. Your efforts will have a positive impact on so many people: the children, their families, the staff and then hopefully each of those people will learn from your good works and do the same. I'm so touched by your willingness to share a little bit of Henry by bringing these joyful gifts to other people who you don't even know.

I had the pleasure of seeing Henry periodically in the clinic or hospital while you were here. What a little imp in that batman costume. I don't know if you remember me but I did meet you briefly a few times in Stacy's absence. In particular I remember checking in with you on the day that Henry died. I remember you so very clearly talking about what an incredible gift Henry had been to you and how glad that you were to have every minute you had to be his mom. (I remember you were saying some of this in response to someone else in the room who in an effort to comfort you was commenting on how it must be a relief to be done w/ all of the doctor appointments and to be able to do other things finally.)I've always remembered how well you were able to articulate that you didn't resent those times but instead appreciated the intensity of the intimacy that you had with Henry in part because of his illness and treatment (not that you at all were glad that he'd been ill). It was clear then and now that you loved that little boy very much and were a wonderful mom to him.

Anyway, I just wanted to thank you directly for all that you are doing and to let you know that you and your family have already touched the lives of many people in ways that you may not even know. Stacy and Jen (the Child & Family Life Specialist) will continue to be your primary contact regarding the project but they have been consistent in updating the rest of us about the project. Please, let your donors know how very much we appreciate all of their time, efforts and generosity. We never forget any of the children or families who have been here and we do talk about you and remember Henry.

Sincerely,

Janet D. Ziegler, MSW, LICSW
Clinical Social Worker
Pediatric Blood and Marrow Transplant Program
Fairview University Medical Center

We went to Liz's mommy's funeral. She was very special. Liz talked about her mommy which must have been really hard. She said something that really stuck in my mind. She said that there was never a day -- and there will never be a day -- that she didn't know that her mother loved her, believed in her and was proud of her. I hope that is true for you.



Slain Del Ray Woman Remembered as 'Gift'

By Chris L. Jenkins
Washington Post Staff Writer
Friday, December 12, 2003; Page B01

In the week since her death, Nancy Dunning has been remembered as the heart of her close-knit Alexandria community, the person residents turned to when they needed a volunteer or information on the history of a neighborhood home.

But yesterday, in an emotional funeral not far from the house in the Del Ray neighborhood where she was found slain last week, the real estate agent and wife of city Sheriff James H. Dunning was also remembered as a beloved sister, mother and wife by those who were closest to her.

"She wasn't just people's neighbor, or real estate agent, or neighborhood activist or [local newspaper] columnist. She was their friend," said Dunning's daughter, Elizabeth, 26, who gave the eulogy at the end of the hour-long service. "She wanted to know more about people . . . so she lit people up when she talked to them."

The service was attended by hundreds of mourners, including many of Dunning's large family -- she was one of 12 children in a Connecticut family -- who sat in several rows in the front of the church. They were joined by real estate colleagues, state lawmakers, City Council members and friends so numerous that many had to stand in the aisles of St. Rita Catholic Church, where the altar was adorned with flowers and candles.

"We have all died this death," said the Rev. Jim Walsh, a family friend who led the service. He said he had known Nancy Dunning for more than three decades and married the Dunnings 28 years ago.

"She was a gift . . . and directly or indirectly was a gift for each of us here today," he said.

Police officials said yesterday that the investigation into Dunning's death is continuing, but they would not release further details, including the circumstances of her death. Sources said yesterday that there was no sign at the house of forced entry, which has continued to shake the Del Ray community this week.

Dunning was shot multiple times. Sources have said she was found at the bottom of the stairs of her home last Friday by a family member, whom police have declined to identify. Friends said that she was to meet her son, Christopher, and her husband for lunch and that one or both returned to the house when she did not arrive.

The family held a private wake Wednesday afternoon.

A reward fund has been set up for information leading to the arrest and conviction of the killer. Organizers said they had raised $50,000 by earlier this week.

Dunning's slaying came just three months after the killing of a T.C. Williams High School student who was fatally beaten in Market Square, and nearly four years after 8-year-old Kevin Shifflett was killed on his grandparents' Del Ray lawn; a stranger is charged in that slaying.

Nancy Dunning "made this community a family," said U.S. Rep. James P. Moran Jr. (D), a former Del Ray resident who spoke to reporters after the yesterday's service. Moran is a close friend of the Dunnings', and his first cousin was married to Nancy Dunning's sister Patricia. "This is a tremendous loss."

Many of the nearly 1,000 people who had attended the funeral later met at a car dealership owned by Jack Taylor, a friend of the Dunnings'. In the showroom -- bereft of the usual automobiles -- friends had erected easels with large photos and collages of Dunning as a child and later as a Del Ray mother and businesswoman.

The showroom was decorated with Del Ray Street signs -- including "West Mount Ida Ave.," where the family has lived for about 20 years, and posters from several festivals that "the Queen of Del Ray" had helped organize.

I guess I'll always know where I was on December 11, 2002 and 2003.

Sadly, Liz never really got to say "goodbye," the forever kind, to her mom. I was talking to Linda and Ari feels like he never had the chance to say goodbye to you. This is from a book that Ari wrote about the two of you. A lot of it talks about how good friends you were. I picked out some of the highlights.







Happy Henry, By Ari
He is so brave. He has courage.
Goodbye.

After the funeral we picked up Jack at school. This flyer was in his backpack.





Nana lent me this picture. This is from your graduation from kindergarten. You were so happy and proud. We were happy, scared and very, very proud of you.



Jack asked if we could swing by Childs Play to get something to leave on your grave. Mom picked out some marbles. Jack bought Pokemon cards. He has totally forgotten Yu Gi Oh and now only cares about Pokemon. Strange. We ran into Matthew Lavine. I told Mom that I like living in Washington because you get to run into friends all of the time. We are going to take Matthew and Jack rock climbing in a week or so.

I cried the whole way out to the cemetery. I put on the CD of all your favorite songs that we made to give out at your funeral. That really helped -- not. Jack was pretty sad. I reached back and held his hand. It reminded me of holding your hand in the car up in Martha's Vineyard.

When we got to the cemetery the gates were closing, just like the prayer. The man at the gate told us that we couldn't come in but we just ran by him and said we just wanted to say hello to our son -- you. It was windy and cold so we didn't stay too long. We'll be back.

We stopped off at Cactus for dinner in your honor. At home we lit a candle.

Right now I am sitting with Nana and Mommy at the dining room table watching movies of all of us from when you were born until today. We are watching the day you left the hospital after your transplant. Jack is looking at your head and he says, "Henry's hair is growing in." He was very excited. You are wearing a Batman shirt and are clutching a bag of Fritos. I forgot about the Bat Symbol that I painted on your window. That was pretty cool.

Jack pulled you in a wagon out of your room to the escalator and then out to the car. Mommy said to me the other day that of all of us, his life has been the hardest. I agree. Today we told him how proud we are of how well he has made it through this very hard year. He loves you. We all love you and miss you.



Good night.



p.s. I have asked everyone I know who has photos of you that we don't have to give me copies for my birthday. I hope I get a lot of good pictures and memories to put up here.

p.p.s. I started writing a list at Thanksgiving of what I am thankful for. I also started writing a list of things I've learned in this year since you've died. I am going to get those up for you soon.

These are some of the photos that Nana had that I was looking at before Thanksgiving dinner. They are all taken at St. Michaels over the years. I cannot believe how different you look at different times in your life and treatment. I will always remember you as the cute, handsome guy you were. I miss your face.