Tuesday, November 28, 2006
This is what Joe taught me to say tonight.
"shabba, lubba, hubba, lubba, ding, dong"
I had to practice and practice until I could say it as fast as him. When I was finally saying it faster, he said I was doing it "gooder" than he was. He says "gooder" instead of "better." He'll get better at that.
Sunday, November 26, 2006
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.
Thursday, November 23, 2006
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.
Monday, November 13, 2006
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 email@example.com
Wednesday, November 08, 2006
On November 6, 2006, daughter of Robert and Andrea Sacks; sister of Sean Sacks (Renee) and the late Stephanie Sacks. Also survived by her grandmothers, Eleanor Sacks and Lillian Elias. Funeral services will be held on Thursday, November 9,10 a.m. at Judean Memorial Gardens Chapel. Interment Judean Memorial Gardens. Shiva will be observed from Thursday through Wednesday at the residence of Lynn Green. Memorial contributions may be made to Fanconi Anemia Research Fund, Inc., 1801 Willamette St., Suite 200, Eugene, OR 97401.
Published in The Washington Post on 11/8/2006.
We knew Dani for a long time. We first met her at a Fanconi anemia Scientific Meeting like the one they just had in Bethesda. This one was years ago in Columbia, Maryland, where I think her family lived.
It was nice to know that she was so much older than you. That gave me a lot of hope back then. I think Dani may have been 33 years old. She was a great warrior. Her father, Bob, has been incredible over these years too. It was nice to know another family not too far away from here living with Fanconi.
This is incredibly sad. I will try to get out to the funeral in the morning. She will be buried in the same cemetery as you. Another person to vist now along with Grandma, Aunt Ida, Uncle Ben and Alison Atlas.
Monday, November 06, 2006
I was totally surprised when Joe said he wanted me to snuggle with him tonight instead of Mom. Normally Mom is the go-to parent for Joe to fall asleep.
His room is pretty chilly but he has plenty of warm blankets. The other day I walked into a Linens and Things store and saw electric blankets for sale. Of course that reminded me of racing to Montgomery Mall to get you an electric blanket from Sears just before the store was closing. I miss being able to take care of you like that.
Here is you getting ready for bed. Stinky Feet was a big theme for us back then. You had them. Jack had them. Mom had them and even I had them.
When I got in bed with Joe tonight he asked if he could get a bigger bed so me, Mom and Joshua could all fall asleep with him together.
I forgot that I told you we were heading to Michigan for the game this weekend. We didn't. Mom and I weren't psyched about the thought of sitting in the car for 16 hours. I think if we hadn't gone to the World Series we probably would have gone.
Erica called last night to talk to Mom. I picked up the phone when it rang. Erica said she had just watched Willy Wonka and the Chocolate Factory and was thinking of you. She told me how she had watched it with you in the basement. It was a nice memory. I am glad she called.
Sunday, November 05, 2006
Jack and I went to Virginia today and walked around with Bill putting flyers on peoples' doors reminding them to go and vote on Tuesday.
I am glad we took Jack. I remember when I was little and Grandma did stuff for a man named Hubert Humphrey when he was running for President. We had a Humphrey poster hanging in the basement.
The neighborhood we visited wasn't the greatest.
There were a lot of pitbulls. Jack isn't too psyched about dogs but he hung in there really well.
By the next presidential election, we will have maps like this that show each house and whether the persons who live there are Republicans or Democrats and to which campaigns they've donated. We'll be walking around looking at our phones and not carrying around xeroxed maps like we did today. Things are changing fast.
Also when I was young I remember going to a rally for a guy named Joe Tydings who was running for the Senate in Maryland. It is important that we are politically active, and that Jack and Joe learn to be involved. I told Jack how what we did today is not allowed in a lot of countries. We are lucky that we live where we do.
Then we came home and watched the Redskins win a very exciting game against the Cowboys. It was almost a perfect day. If I had gotten a nap then it would have been perfect.
Michael and Joshua went with Uncle Andy to the game. You went to games -- not sure when I took this picture of you -- and Jack has seen some great ones. Joe hasn't been to any. I'll have to fix that.
Tonight Mom and I are going to a party for Jeffrey and his book. I better wake up. It is in a house that is two doors down from Susan, Theirry, Simon and Alex's old house.
Jack had a sleepover at Simon's last night. I have been watching old videos of you lately to put on here and I have seen a lot with Simon. It is great that Jack and Simon are good friends now.
Mom asked if I was okay. I wondered why she would think I wasn't. She said because I have been "spending a lot of time with you." She means because I have been looking at all of the videos. I am spending time converting them to a format that will let me post them here.
I still don't like how good they look. I am looking at different ways to do it so they look better.
Oh, and I told Mom that I am fine. I am.
Wednesday, November 01, 2006
Barry Simon set to return to Missoula
By VINCE DEVLIN of the Missoulian
Barry Simon is coming home.
“He had more faith than his mother did,” says Cindy Wamsley, whose son has beaten the odds, and beaten back death more than once, since undergoing a bone marrow transplant at Children's Hospital in Seattle more than a year ago for a rare and often fatal disease called Fanconi anemia.
“I left Montana knowing I was going to lose my son,” Wamsley says. “My son left knowing he was going to beat the odds. He just said, ‘Let's get 'er done.' ”
It's been a difficult 14 months for 12-year-old Simon, a former student at Paxson Elementary School, and his mother.
But from the beginning, when his mother asked the Missoulian to solicit cards and letters to Barry from folks back home, western Montanans have played a huge role in his recovery, Wamsley says.
“He's gotten thousands of cards and letters,” she says. “Thousands. I could fill a couple of storage sheds. It's been unbelievable.”
Even though it's been months since the last request went out, Simon still gets 20 to 25 pieces of mail a week from back home.
“A man named Russ sends Barry $5 every week,” Wamsley says. “It's Barry's allowance - and usually the first thing he opens.”
One woman who signs her letters O.G.B. has written faithfully from the start.
“We found out O.G.B. stands for Old Grandma Barbara,” Wamsley says. “She's written every day. Even when she went on vacation, she has not missed a day. And sometimes she'll send boxes of presents and tell him to save them for days when nothing else comes, so he'll have something to open.”
Now, Wamsley wants the people back home who have kept her son's spirits up as the months dragged on, to be able to meet Barry.
“And we want to see all the friends we've never met,” she says.
University of Montana men's basketball coach Wayne Tinkle wrote to Simon, and told him when he did get home, he'd host a party. Mayor John Engen has promised him a tour of the city.
“We're going to have a celebration,” Wamsley says. “Even if we have to do it in a park in a foot of snow, we're going to have a celebration. Barry's going to be 13 on March 30, and I didn't even think he'd see 12. 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.”
The homecoming will only last a few weeks.
Wamsley says she has made the difficult decision to move to Seattle permanently, so that Simon can still be seen by the doctors who have cared for him throughout the past 14 months.
Moving home to Missoula would have meant regular 400-mile roundtrips to Spokane for checkups with new doctors.
“Things happen at the drop of a hat,” Wamsley says. “He's had 25 to 30 infections since the transplant, and one more staph infection could be terrible. If he comes down with a fever or the flu, he's got to be in a hospital immediately, and it's scary to think of putting him in one that doesn't know about Fanconi anemia. Over here, everybody knows Barry, and everybody knows his disease.”
It's a genetic disease that leads to bone marrow failure, also known as aplastic anemia. There's a one-in-a-million chance that any one person will carry the defect in an FA gene, and the only way to get it is for both parents to carry the same defect.
What are the odds of that? Astronomical.
The odds of surviving are better, but not great. According to his mother, 80 percent don't live through the disease or ensuing transplant, and Barry was at death's door more than once in the past 14 months.
Wamsley hopes to bring Barry home this weekend or next. They plan to stay until the first of the year, when they'll move their belongings in Missoula to Seattle.
They're asking for financial help, to put their belongings in Seattle in storage, get home and then make the move back to the coast, one more time.
“Barry wants to go home and stay,” Wamsley says. “He's very sad. We love Montana and it will always be home. But I want him to be where he can receive the best care in the world.”
During the weeks they'll have in Missoula, Barry wants to see his friends and go to school.
“He wants to eat breakfast and lunch every day at the school,” his mother says. “And he wants to meet, and see the faces, of the people who wrote to him.”
“God chose Barry to touch these people, and maybe make them more grateful for their lives and the challenges they face,” Wamsley goes on. “God chose Barry for a purpose.
“And he's not done with him yet.”
Reporter Vince Devlin can be reached at (406) 319-2117 or at firstname.lastname@example.org
This is a nice video about what a dad is doing to honor his kids who died of Fanconi.
Family Raises Awareness For Fanconi Anemia
(CBS4) DENVER A father and daughter team will travel east this weekend to tackle the New York City Marathon in honor of two children who lost their lives to Fanconi anemia.
Ken Atkinson and daughter, Whitney don't really fancy themselves marathoners but have been training for their first 26-mile run on Nov. 5.
They'll hit the streets for Whitney's siblings, Kendall and Taylor, who tried to go the distance against a deadly disease.
1n 1990, Kendall was 7-years-old and Taylor was 3-years-old when they were diagnosed with Fanconi anemia, a blood disease with no cure.
Their only hope was a bone marrow transplant so thousands of Coloradans turned out to have their blood tested.
A dozen years went by with no compatible donor.
"I think we made the decision to live our lives with hope and live our lives with promise," said Jeanne Atkinson, the children's mother.
In 2004, Kendall found a match but died from transplant complications. In 2005, Taylor was also transplanted and spent 9 months in a hospital in New York City.
"All that we could do was just to pray for him," Ken said. "He said 'just pray and just pray for me.'"
As his son lay dying, Ken vowed to come back and run the marathon to raise money to find a cure for Fanconi anemia and Whitney later decided to sign up in honor of her siblings.
"Maybe this is a physical expression of what I wish I could do for them," Whitney said.
The pair's personal best is 20 miles but Ken believes memories of two incredible children will see them through the entire 26 miles.
"I think about Taylor and Kendall and what they endured and when it gets hard I just say 'hey you know this is nothing, this is really nothing,'" Ken said. "I think about what they did."
The Atkinsons have raised $50,000 to find a cure for Fanconi anemia and they're still taking donations.
November is National Bone Marrow Awareness Month. Registration to the National Marrow Donor Registry is free.
To fund research to find a cure for Fanconi Anemia, learn more about the Taylor and Kendall Atkinson Foundation or e-mail email@example.com. For information on the Bone Marrow Registry, visit www.bonfils.org.