Friday, June 29, 2007
I ran into an old friend this morning when I was walking home from the gym. We worked on a campaign together. We tried to get a man named Walter Mondale elected president in 1984. The campaign headquarters were in Glover Park and Mondale was from Minnesota. My favorite places.
I hadn't seen my friend in a lot of years. You can guess how many when I tell you that he asked how you were.
I said that you had died. Four years ago, though I am so not counting. I thanked him for asking about you.
I like running into friends from the past. A lot of our friends are moving out of the neighborhood. They just opened the first Ethanol gas station in Washington at the Chevron station on the corner. Ethanol is gas that has corn in it. It is supposed to be good for the environment or something. They had a film crew there the other night when we walked over to get ice cream at Max's.
Here is the news story.
Ethanol arrives in D.C. at $2.55 a gallon
June 29, 2007
By Adam Terese - The first ethanol fueling station in the District opened for drivers yesterday, joining a small — but growing — group of stations nationwide selling the biofuel.
The Georgetown Chevron on Wisconsin Avenue will sell VeraSun's branded VE85, a blend of 85 percent ethanol and 15 percent gasoline, in addition to regular gas. The price yesterday was $2.55 a gallon, 62 cents cheaper than $3.17 a gallon for regular gasoline.
The Navy Exchange Gas Station near the Pentagon in Arlington also sells E85, as do stations in Rockville, Annapolis and Fort Meade, Md., according to the National Ethanol Vehicle Coalition.
The cleaner-burning ethanol fuel is an environmentally friendly way to move toward energy independence, said Patrick Farrell, an Enterprise Rent-A-Car spokesman.
"We view this as an opportunity to bring some exposure, to jump-start the initiative," Mr. Farrell said.
I am sad that our friends are moving away from Glover Park. Even though I told you we'd never ever move, Mom and I looked at a house in Maryland last week. It was in Garrett Park. I really like it there. It feels like a 1950s neighborhood. There are so many trees, there is a commuter train station and they don't deliver the mail to your house - you have to pick it up at the post office.
What is nice is that Jack has friends from school who live there. That is why we looked at the house. It is hard to be a kid growing up in the city. Especially when there aren't many or any other kids living nearby.
I've told you before that we never want to leave our house because of all of the memories of you there. So it was good that when we drove on Wisconsin Avenue near Garrett Park there was a ton of traffic, and when we looked at the house it smelled like cats. That was an easy "deal breaker" for us. We didn't fall in love with it, so we didn't have to make any hard decisions.
I made Jack into a Simpson's character. I am going to email this to him today at camp. In my emails I make it sound like not a whole lot is happening back here so he doesn't feel like he is missing anything. Actually, that is the truth. It is hot and rainy and no-one's around 'cause everyone is on vacation.
I can do a bunch of different ones for you. You had a lot of different "looks" over the years. Probably the easiest will be when you had no hair from the chemo and radiation. You looked very handsome. I'll work on that.
We were going to go to St. Michaels for the weekend, but instead we are going to stay put and go to Aunt Abby and Uncle Andy's beach house for the Fourth of July.
The Fourth of July is another one of those "hard times," like your birthday and your death day. There are happy memories of the time we all went to Spain for Bill and Cristina's wedding on July 4th (I think) and of course your transplant was on July 6th. I think that somehow, someway our brains are tuned into these anniversaries even if we aren't consciously thinking about them. I know I get moody and sad sometimes and then I'll realize - hey, this is the anniversary of your "other birthday," your transplant.
I'll report back on Ratatoullie.
Thursday, June 28, 2007
Whenever I see that a new Pixar movie is coming out I get excited and sad. Excited to see it, sad thinking about you. You were the true movie lover. Not sure it would have still been the case the older you got, but you loved Pixar movies. The Incredibles and Cars came out after you died and the new one is Ratatouille about a rat who wants to be a chef in Paris.
I hope that Mom and I get to take Joe to see the movie this weekend. Maybe it will rain, but then everyone will be there.
If I am not mistaken, the characters -- not the rat -- look a little like younger versions of me and Mom. The hair and nose are right for me, but Mom has a much smaller nose than the girl in the movie. Aside from that and the fact that I am not the greatest cook in the world (maybe I need a rat's help) this could be us.
There is another movie I am psyched to see and that is the Simpson's Movie. I think this will be the first movie that both Jack and I are equally excited to check out. On the website for the movie you can make yourself into a Simpsons character. Here's me. How'd I do?
I am going to make Jack into a Simpsons character and email it to him at camp. I think he'll like that. Maybe I can do some of his bunkmates as well. I have already emailed him once and sent him a package. From the pictures posted on the Camp Ramah website it looks like he is having a great time.
Here are some pictures from Papa Teddy's wedding. Let me tell ya something -- it wasn't particularly easy being in the same sanctuary where Grandma's funeral was held. I hadn't been there since then. And the place we signed the Ketubah, the library, was the same place were we ripped our little mourner's ribbon and received people before the funeral service.
Har Shalom has a lot of memories for me. I was Kadimah and USY president when I was young. I kinda kissed Rachel Wittenberg there (in a few years I'll tell you how I got in trouble with my friend Alicia in a convent). She later joined the Israeli army, but I don't think I was the cause. I went to Sunday school there. Aunt Jen and I were B'nai Mitzvah there. Grandma's funeral was there. And now we went to Papa Teddy's wedding there. That's what a synagogue is for, right.
Though we really like Adas Israel, I think we may have Jack's Bar Mitzvah at the historic Synagogue at Sixth and I Streets, in Chinatown. Jack and Aunt Jen will do the service themselves.
Jack and Hannah were both at camp so it stunk that they couldn't be there. Grandma's dad, my Grandpa Nat, remarried later in life like Papa Teddy just did. I never told Mom about that until this past weekend. I don't talk about my grandparents because I don't remember them too well. Probably because I didn't really have any type of relationship with them. That is why you and your brother are so lucky.
Wednesday, June 27, 2007
A while ago I told you about the series they run on ESPN where they Make a Wish for someone with their favorite athlete.
They had one on yesterday with a kid meeting his hero, David Ortiz.
Joe and I were watching it while I was making him dinner. I was trying to explain to him what it was all about and he looked at me funny 'cause I was crying as I was talking.
I reminded Joe that you met Big Papi when he was on the Twins. He gave you a bat that I had signed last year when he visited XM. He gave the kid in the ESPN Make A Wish story a bat too.
Here is a wonderul article about a girl who has FA and raises money so other kids can have their wishes granted. She is a Super Hero!
Helping make WISHES
Friday, June 22, 2007
By Stu Woo
Journal Staff Writer
WARWICK hen she was 6 years old, Meaghan Spillane sat in the living room of her parents’ quaint, one-story house and wished for a trip to Disney World.
“She wanted to meet the princesses,” her mother, Patricia, said.
Two representatives of the Make-A-Wish Foundation nodded and smiled, and a few months later, Meaghan, who was suffering from a rare genetic disorder, was off to Florida with her parents.
Seven years later, Meaghan doesn’t really remember the trip or even making the wish. There were some princesses and a parade, she said, but the specifics are hazy. What she remembers clearly is the feeling of exhilaration she felt the entire week.
The feeling was so powerful that Meaghan decided she had to give back to Make-A-Wish.
So last summer she sent letters to, and visited, more than 200 businesses and individuals — all by herself — and raised $3,100 for the charity.
“I was surprised — she’s usually pretty shy. She approached people by herself,” said her father, Steven. “I just drove.”
For her efforts, she was named Rhode Island’s top middle-school volunteer by the Prudential Spirit of Community Awards earlier this year. Last month, she attended a ceremony in Washington, D.C., where football star Peyton Manning congratulated her and 101 other top youth volunteers from around the nation.
But Meaghan, now a healthy 13-year-old, is not done with philanthropy. Though she is busy with friends and preparing to enter Pilgrim High School this fall (but only after reading the new Harry Potter book), she’s recruited her friends for another round of fundraising this summer.
“I just really wanted to give back to them because they helped me when I was little,” she said. “I wanted to help another kid so they can experience what I experienced.”
“I want to raise more money than last year,” she said.
Those close to her have no doubt she’ll do just that.
“She’s a great salesperson,” said Diana L. Hackney, president and chief executive of the state’s Make-A-Wish chapter. Her personal story, Hackney added, makes her irresistible to potential donors.
“How can you say no?” she asked.
IT WAS ACTUALLY during a previous trip to Disney World, when Meaghan was 4, that her parents first realized something was wrong.
Meaghan, an only child, was getting out of the pool when her parents noticed bruises all over her body. When the Spillanes returned home, they took her to her family physician, who referred them to Hasbro Children’s Hospital, in Providence. There, noted pediatrician Dr. Edwin N. Forman saw Meaghan. The family knew something was wrong when Forman walked into the waiting room trailed by a team of doctors.
Forman told them Meaghan had Fanconi anemia, a life-threatening genetic disorder.
“I was devastated,” said Steven, Meaghan’s father. “To tell your 4-year-old daughter that she’s sick and that there’s no cure . . . ”
Forman, who still treats Meaghan, said Fanconi anemia is rare. Both parents must carry the gene, and even so, there is only a one-in-four chance that a mother will give birth to a child with the disease.
It can be life-threatening. The main problem Fanconi anemia sufferers have is that they can develop aplastic anemia, which occurs 90 percent of the time, or leukemia, which occurs 12 percent of the time. Both are potentially fatal but can be cured by bone-marrow transplants; but bone marrow transplants would be a last resort, Forman said.
“You’re living on thin ice that might break, or under the sword of Damocles, as they say,” Forman said.
Fanconi anemia sufferers also have a much lower white-blood cell, hemoglobin and platelet count than that of a healthy person, which makes them much more susceptible to spontaneous hemorrhaging and bruising, Forman said. As a result, Meaghan had to be careful on the playground and couldn’t play contact sports.
“I work for Chuck E. Cheese’s, and to see all those kids running around and to see kids doing what she can’t do” is heartbreaking, Steven said.
Patricia quit working full time to take Meaghan on her frequent trips to the hospital. But over the next few years, Meaghan’s blood count began rising for no explicable reason, Forman said. For example, in her last checkup — now required only every three months — she had a platelet count of 120,000 per cubic millimeter — twice as high as it had been five or six years ago. (A normal platelet count is 150,000 per cubic millimeter.) Her white-blood cell and hemoglobin count have been approaching normal, too. Though those numbers could fall any time, Forman is confident they will stay up. She is still in some danger of aplastic anemia or a cancer developing, he added, but she also has a reasonable chance of having a normal lifespan.
Meaghan said she has never been worried.
“I have never been afraid of it,” she said.
Meaghan is able to do everything a 13-year-old can do, except play contact sports. She has found an outlet for her energy in dance. She dances a couple of times a week, and earlier this month she showed off her moves at her dance school’s annual concert. Her parents beamed as she bounced and swayed to music from Mary Poppins, Copacabana and Hairspray.
“I can throw all my energy into it,” Meaghan said. “It’s just really fun.”
FORMAN didn’t know that Meaghan had been honored for her volunteer work, but he wasn’t surprised.
“You might say she’s unlucky to have this condition,” he said, “but she’s lucky to have these parents.” And about her volunteer work, he added: “Sometimes a challenge stimulates a person to rise above it and persevere.”
Tuesday, June 26, 2007
Sunday was a busy day. Jack flew to camp. Papa Teddy got married. Joe had his baseball "banquet," and we went to dinner at the house of friends of ours. I have something to say about all those things and I have pictures. I have just been too tired to get it all up here. Know that I have been thinking about you and Grandma A LOT.
Here is a start. Joe's coach Seth, who is a fantastic guy, said that Joe is a terrific hitter. I hope it doesn't go to his head, but it will. All the kids on the team were really great and special. I already signed him up to play this fall.
Joe got a trophy. You don't have to imagine how psyched he is 'cause you can see it in his smile. Clicking on the picture makes a slideshow appear.
I love you Hen.
Wednesday, June 20, 2007
BACK TO BEING BRIA: 5-year-old puts marrow transplant behind her
'Life's 100% better now'
June 20, 2007
BY AMBER HUNT
FREE PRESS STAFF WRITER
With her shy eyes looking at the floor, Bria Banks didn't smile when given a shiny pink bicycle.
Or when handed a gift bag full of toys.
Or when shown the oversize novelty check promising a free trip to Disney World.
The first thing that got 5-year-old Bria to smile at a luncheon in her honor Thursday was a simple blue balloon, which she batted around as she began to giggle.
She was all smiles after that.
That's when it became clear: Bria, who just six months ago was so sick with aplastic anemia and Fanconi anemia that she would have died without a bone marrow transplant, is a little kid again.
And so is her 7-year-old brother, Brandon -- her marrow donor.
"Life's 100% better now," said Twan Banks, Bria and Brandon's father. "The family's all together."
Last November, Bria went to Cincinnati to get the transplant and spend her recovery time. Her mother, LaTisha Lockett, stayed with her.
Meanwhile, Banks stayed with the couple's two other children -- Brandon and 1-year-old Brielle -- at the home of Lockett's mother in Detroit.
"It was hard having half the family here and half of it there," Banks said.
Bria was given the bike, toys and trip Thursday by the Olympic Steel Co.'s Detroit division.
The company adopted the Bankses as a Make-A-Wish family for the holiday season and bought the gifts with donations that kept spilling in after Christmas.
"It's nice to take time to slow down and remember what's really important in life," said Michael Cedoz, the division's general manager.
But for the Bankses, the adoption went far beyond Christmas. The children's tale -- of an older brother helping save his little sister's life -- touched employees, Cedoz said.
"We got to help and share some of our blessings," he said.
Bria's diagnosis came in September. Both anemias are rare blood disorders that attack the bone marrow.
The transplant was no easy procedure as Bria was allergic to some of the medications and had two seizures.
Doctors had to revive her after she quit breathing. An MRI revealed minor brain damage from the temporary lack of oxygen.
After spending about four months recovering in Cincinnati, Bria came back home to Detroit. She takes medication daily to suppress her immune system so her body won't reject the foreign marrow.
Other than that, her family says, life for Bria is nearly back to normal.
And, after her initial shyness wore off, that's how it appeared Thursday.
Wearing a yellow-and-pink Dora the Explorer outfit -- her head, once bald from chemotherapy, now covered in wispy black hair -- she quietly sat at the luncheon and gobbled down pasta.
But when Brandon and Brielle started batting around those balloons, she slowly got up and joined in. And then she smiled.
"I knew you had it in you," her mother said with a laugh. "Where were you hiding?"
Contact AMBER HUNT at 313-222-2708 or email@example.com.
Copyright © 2007 Detroit Free Press Inc.
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.
I did this Super Hero quiz. I will do one answering for you. It seems I was pretty far from being Batman. You will do better. We'll see.
You are Green Lantern
|Hot-headed. You have strong |
will power and a good imagination.
Click here to take the "Which Superhero am I?" quiz...
Tuesday, June 19, 2007
Your aunt and uncle's beach house was in a magazine. I am happy for them. It looks beautiful. You were really sick when we were there. I remember us all in that big cycling contraption. I think they fixed the house up after you died. Not sure. We haven't been for a while, but I bet we'll go over and visit when we go to the beach in August. We rented a house in Rehoboth for a week.
Jack is going away to Camp Ramah on Sunday. Mom spent last night ironing name tags into his clothes. That is something my mom (Grandma) did for me when I went away to Tel Shalom. I bought Jack a bunch of Simpsons comic books to read in his bunk. I think he'll be psyched. He'll use his headlamp!
I know he is excited about going. As excited as Mom is bummed to have him leave. I will miss him. Cousin Hannah is already away at her camp. Aunt Jen and Uncle Dan are coming to town on Friday for Papa Teddy's wedding.
Joe and Jack are going to Home Run baseball camp this week. Joe is going to go to camp at St. Alban's. I am not sure when he starts. Remember when you and Joe and I brought Michael to camp at St. Alban's. Joe was in a stroller. I was worried about how much walking we had to do. You weren't doing that well.
Thursday, June 14, 2007
Check out your brother. I gave him the winning slogan... "Tired of Dick Cheney, Vote Jack for Vice President!"
Mom and I are really happy for him. He had to give a speech in front of all of the other students, and he made posters that he hung up throughout the school. Joe even lent a hand by getting his whole class to cast their votes for his big brother.
Sent: Wednesday, June 13, 2007 5:21 PM
To: firstname.lastname@example.org; email@example.com
Subject: [parents] Student Council Elections
Congratulations to all of our students who ran for student council officer positions today. We are very proud of all of them for their hard work, respect for their peers, and excellent speeches! Here are the students who will fill the positions of student council officers for the 2007-2008 school year:
Director of Curriculum
Jewish Primary Day School
of the Nation's Capital
This is a picture that I took of the Vice President the other morning. He fell asleep with his headlight on. His nighttime routine is that he either listens to comedy on XM or Napster; or he puts on his iPod with headphones; then he climbs into bed with 15 different books and reads them by the light of his headlamp.
He is a beautiful kid. You'd be proud of him.
Wednesday, June 13, 2007
Joe has told both Mom and Nana separately that he is no longer to be called any nicknames, like Jo-Jo. He is Joe. Nothing else. Your little brother is growing up.
This is the last week of school. Joe is going to graduate from Pre-K and will be a kindergartner next fall. Jack will go into Fifth Grade.
Mom and I were at school last night for a meeting. I read your plaque start to finish. It said you entered school in Kindergarten and you were in First Grade when you died.
Tuesday, June 12, 2007
This is a video from the Super Hero party that we had a few weeks ago at Georgetown. Hackensack and Minnesota had parties too. The party was in the Lombardi clinic, but this movie is from upstairs on the 5th floor. We took the party to the kids who were in isolation and couldn't come to clinic.
"Henry's spirit will live on."
We went out to the cemetery on Sunday. The weather was really nice. We visited Zack Klein, who is so close to you now. I tried to help Zack's mom and dad get something special on his headstone. Unfortunately, it isn't going to happen. I can understand why, but it is still a disappointment.
The next thing that I am trying to make happen is making sure Molly and her mom meet Jon Bon Jovi. That should happen in July. I cannot fail. I'll keep you posted.
I have been spending a lot of time organizing our pictures. There is (are?) a ton. Which is good. I am going to make a big "Henry at St. Michaels" photo book to put out there. I am going to match pictures of you taken in St. Michaels with nice pictures of birds and trees and things that we've taken out there.
Last week was a tough Henry week. Mom and I spent a lot of time thinking of you and crying. Mom rewrote one of the chapters of her book and it is great. It is about you and Bella. All that came from nowhere. I am glad it happened.
Wednesday, June 06, 2007
I have a Mother's Day letter that I haven't put on here. It was a weird morning because I looked at Mom and asked her if she was feeling alright. And she looked at me and said she was wondering the same thing about me.
I have been thinking about Grandma a lot. I think it might be partly because Papa Teddy is getting married. I miss her.
Here is a card that Jack made for Mom and let me tell you it made her day complete. She said it was the nicest thing anyone could ever say. I think Jack has a future at Hallmark Greeting Cards.
Mom, nobody's perfect but to me you are.
Joe made these for Mom. He is very into making hearts.
And here are cards you made for Mom years ago.
My Mother's Day present for Mom was to take us all to the Nationals game. I figured having all of her boys happy and smiling with her out in the fresh air was a good gift.
When we got back we had a big Mother's Day barbeque in our backyard for all the Strongins, Cherners and Goldbergs. Here are your cousins on the back steps.
It was a nice day.