Tuesday, December 26, 2006

Hey Hen. We are down in Florida for vacation. I am sitting in the car next to the Starbucks outside of South Seas Island Resort in Captiva. As I started to type this, I glanced in the rearview mirror and saw this guy, Ted Koppel, who introduced the Nightline story about you that John Donvan did. Everything comes back to you.

He was walking to his car with his son carrying cups of coffee. Jack drinks stuff from Starbucks. I think that is crazy, but Mom says it's fine. I guess it is because I have never had coffee. Mom says that Jack drinks something that is just like hot chocolate.

So I am here looking at my email because we are going to send out an invitation to all our friends for a big Hope for Henry Superhero Party early next month. I am waiting to send that out.

When we were landing in Florida I said to Mom that this is the last place that was a "Henry Place," that we haven't been to since you died. The beach, the Dolphins, the alligators, Ding Darling, manatees, the shelling, you and Jack and me playing pirates, you singing Twinkle Twinkle Little Star over and over again. I am thinking about all of those things that remind me of when we were here with you and Jack. Every time we drive by the stadium in Fort Meyers I say, "that's where Henry met Cal Ripken." I remember how you hit your first golf balls in the driving net they have set up at South Seas. That place was beat up real bad by Hurricane Charlie but now they are rebuilding. We are staying somewhere else this time around.

For Hanukkah I bought video iPod, put every movie we have of you on it and gave it to Mommy. She really liked that. The funny thing is she bought me the same thing for my birthday. She bought it a while ago because she had them write something on it. Of course the first thing I did was put all those same movies of you on mine. I have it here. There are two videos from two different trips we made here all together. So you're here with us, kinda.

I am going to get back to everyone now. Nana and Papa are here, and so are Uncle Andrew, Aunt Tracey, Sam and Emma. It is raining but that is okay 'cause we're all together.

I love you.

Thursday, December 21, 2006

December 21, 2006

Dear Henry,

I am Hugh. I know your dad has written to you about me.

Today is a sad day for me because your dad is leaving XM to pursue a career involving improving political messaging by knowing how the brain works – there is an oxymoron in there somewhere. He has been at XM for years and has become one of my closest friends, along with your mom.

Your dad showed up in my office during a challenging time in both our lives. Brought together through a game of Jewish geography, we found each other as if by fate. He was gingerly, tiptoeing his way back into the workforce after dedicating his life to your life. And I was just beginning a terrifying journey dealing with Mary Beth’s illness. Our friendship is a true testament that some good can come out the worst situations.

I can tell you honestly, that I would not have survived my journey without him. Whenever a tough medical or personal issue would arise I always said to myself, “What would Allen do?” Each time I went to him (which I did often) he would always give me the most honest and valuable advice in the most caring way.

Your dad is very impressive in so many ways. He is totally dedicated to his family, amazingly creative, compassionate and smart. He adores your mom and will do anything for her and your brothers. I will miss him at XM despite the fact that he would avoid me and never answer his cell phone.

Your dad can do anything -- Learn about the brain, start a non-profit organization dedicated to you, program a Hanukkah Channel, lobby Congress, mingle with celebrities and the security guards, start a website, play video games with Jack, baseball with Joe, ride a motorcycle, tractor, talk politics, root hopelessly for the Redskins and take care of all his friends and family…All at the same time. But I have more muscles and thicker legs and that will never change.

Your dad and I will likely see more of one another when he leaves XM and that will make Mary Beth and me very happy. The Goldberg’s are part of the Panero Posse and visa versa and no change of work address is going to change that.

So Henry, be assured that I will always lookout for your dad no matter where he works.

Love Hugh

Monday, December 11, 2006

Today was sunny and unseasonably warm. We were unseasonably not so sad. We went to the cemetery and were met by a lot of people. All of your cousins and Aunt Abby and Uncle Andrew were there. Of course Nana came. And Ari and Linda showed up too. I am so tired I am going to go to sleep but I have a lot to tell you. One of the reason I am tired is I stayed up last night trying to make this video.

It is really bad and that is being nice. But you get the idea. I learned a bunch of things as I tried to make this. One is I need to practice a lot more. The other is I need a computer with more memory.

Henry TV!

This was Aunt Abby and Uncle Andrew reading Mom's eulogy at the funeral. For some reason the sound get's all messed up. Sorry. I'll practice and it'll get better. More tomorrow.

Saturday, December 09, 2006

Friday, December 08, 2006

This is a long video of you in your room up on 5A at Fairview just after your transplant. You look very peaceful while you are sleeping and very handsome and strong when you are awake playing with Mom.

I remember painting the Bat Signal on the window. I never ever, ever thought the next time I'd be using it would be on your grave marker. The other day when I was looking back at the blog I kept when you were dying, I read something that stood out to me. On the night you went into septic shock and the coma I wrote the sentence, "Henry isn't going to die." I believed it.

It is frigid out now, kinda like Minnesota, but luckily it will be pretty warm for December on Monday when we come out to the cemetery. See you Batman.

Henry TV!

Thursday, December 07, 2006

I forgot to tell you about something that happened to Mom at the event in Philadelphia. A woman came by to talk to us at the Hope for Henry table in the store. She told Mom a story about her own son who has a heart problem.

The woman explained that if her son were to die it would be much more painful for her than your death was for Mom. That is because her son is in his twenties and you were only seven. When Mom told this to me on the drive back we both laughed very hard.

When people compare pain they just don't get it. The mom wasn't trying to be mean, she was just kinda clueless. A person's pain and sadness is a person's pain and sadness.

Here is video of Hanukkah 2001. I see that the Klein Sterns, the Reeves Goldbergs and the Goldman Strongins are over. You were pretty swollen. Mom and I talked about that the other day on our drive to and from Philadelphia. I was thinking that you didn't really notice that you were swollen all that much at the beginning, but it did start to bother you at some point - the way you looked, that is. I, of course, just think you look beautiful.

I uploaded another video last night right after your transplant where you look like your normal self, except that your hair was falling out. I can't find it to put it on here. I am pretty good at this computer stuff, but even I get confused every now and then.

Henry TV!

I took this from outside. I added another Menorah this year. I bought a baseball Menorah in St. Louis when we were there for the World Series. There is some video of Joe when he was baby Joe on the end of this.

Wednesday, December 06, 2006

'Brave and hopeful and strong' District child loses battle against genetic disease

by Debra Rubin

"Mommy, this is a very bad last night of Chanuka." Those were the last words Henry Strongin Goldberg said before being put on a ventilator. And his last words ever.

Just days later, on Dec. 11, Henry lost his battle with Fanconi anemia, a rare genetic disease, dying from complications of a bone marrow transplant.

You said that 4 years ago last night. That was it. No more. On this day you were deep in a coma. You died 5 days later.

Yesterday, Mom and I were in Philadelphia at a fundraiser for the Hope for Henry Foundation. The fundraiser was in a store called Neiman Marcus in a shopping mall called King of Prussia Mall. I've always thought it was weird that there is a place in Pennsylvania called King of Prussia. Who is this King of Prussia?

While we were there I spoke on the phone with a reporter who was writing a story about the Radio Hanukkah channel that I am working on at XM. The writer asked me what it meant to me personally to get this channel on the air.

I told him that when I was growing up I used to listen to the two hour Jewish radio show that aired on Sunday mornings here in Washington. I said that I felt a certain amount of satisfaction helping XM put on the air an entire channel devoted to Jewish music and culture so people can hear much more than what they normally get on regular radio.

What I didn't say -- but what I feel -- is that I don't want there to be any more bad nights of Hanukkah.

As I work on this thing I cannot help but think about you and that Hanukkah four years ago.

Sunday, December 03, 2006

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.

Friday, December 01, 2006

I was watching TV this morning. The hosts said that it is December 1. I immediately thought, "eleven days." They then said, "The countdown begins." They are talking about the countdown to Christmas.

I have sooooo much to tell you but I have just been too busy to write. I am working a lot right now. I feel like I am only making pitstops at home before heading back to the office. I have big "life" news to report to you.

Hopefully over the weekend I can take a small break and write you about all that is happenening.

I love you.

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

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.

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 vdevlin@missoulian.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.