Wednesday, June 30, 2004

Hey, guess what. We got the fish tank out of the garage and cleaned it out. Jack got it in his mind that he wanted to have fish again. We bought new gravel and all of these great Spongebob things to put in the tank. There is a pineapple - Spongebob's house - and Patrick's rock that he lives under.

Patrick's rock is a bubbler and it opens and closes. Very cool. We put in 2 Tetra fish and if they survive for a week or so, we'll buy more. I think Jack named them Tetree and Tetroo. He know which is which. Of course, all of this reminds me of when we bought the fish up in Minnesota for our hotel room to make it more of a home, and the fish tank in the clinic and the one in Dr. Van Burik's office.

Uncle Dan left this morning. Last night Jack had a sleepover in the basement with him and the fish. They read for a real long time and then fell asleep. It was very cute.

I've been transfering all of the videos of you to DVDs. I am seeing a lot of you lately. These videos are great and also very hard to watch. Last night I was doing the one of you at your last birthday. It was you and Jack and the magician and no friends because you couldn't risk getting sick. I think Beth might have been one of the people who arranged for the magician.

When I was watching I realized it was the last video that I ever took of you. I had to label the DVD and I called it "Henry's Last Days." That didn't feel good.

When I am done I am going to copy the DVDs and put a set in the safe deposit box. I am then going to try and make some kind of movie of your life. A best of Henry DVD.

Those movies, and these letters and Mom's book will let Jack and Joe know you better. Joe was wearing big boy underpants today. I'm pretty sure they were yours, Harry Potter.

This is you - probably early in your underpants wearing life.

Mom and Jack saw The Prisoner of Azkaban. They loved it. I guess I'll have to wait until it comes out on DVD. J.K. Rowling, the woman who writes the books, is in the middle of writing the next book which is going to be called "Harry Potter and the Half Blood Prince." I'll let you know what happens.

I love you Henry.

We went to the funeral and the burial today. It seems like the same friends and family are just moving from funeral to funeral.

The funeral was at Tifereth Israel synagogue. I used to work there as a USY advisor before you were born. I'll explain what USY is later. Walking in to the synagogue today there was a box that was in the front lobby for people to give toys to children on the Hematology/Oncology floor at Children's Hospital. That got me appropriately sad. Oh yeah, we got a letter from Dr. Jonas, your heart surgeon from Boston Childrens Hospital. He is the new head of cardiology at Georgetown. That would have saved us a trip. Only 8 years late.

At the burial Mike was the first to shovel dirt on Ethan's grave. I could feel inside me exactly how I felt when I was shoveling dirt on you. I was angry and sad and strong all at the same time. I wanted to shovel all of the dirt onto you all by myself. I could see some of that in Mike. It made me cry. Henry, I feel so bad for him and for Beth. Big Michael was there. He said that people always say, "parents aren't supposed to bury their children." None of us believe that anymore.

Papa Sy said, "Funerals give me a headache." I'm with him on that one.

When I was at the cemetery, which is different from where you are buried, I was scouting out the good places to be buried. There were some beautiful trees. You know that the spaces where you are buried are called "plots." I asked Mom if for Jewish cemeteries it should be spelled "plotz." Plotz means to burst with emotion.

Beth just buried her mother last week in Minneapolis. Beth told us how either she or her mom had been married at the Calhoun Beach Club where we all lived when you were up there for your transplant. I couldn't believe that Beth had to bury her mom and her son in one week's time. That is unbearable.

Tuesday, June 29, 2004

Hen, I am terribly sad. I am sad for Beth and Mike. Their son died. He didn't want to live anymore. Mom is terribly sad, too. Mom and I are going to go to the funeral tomorrow. You loved visiting with Beth and you loved the way she said "Oh Dear." You would walk around saying "Oh Dear" all the time.

You don't remember this but when you were one year old we went to Martha's Vineyard, which is an island off of Massachusetts, and stayed in Beth and Mike's house as a little vacation before one of your surgeries in Boston. We had such a great time there together. It was Rosh Hashanah.

You, Mom and I went to tashlich services at Lambert's Cove and it was one of my favorite memories of us together as a family. We were on a beach - very different from tashlich in Washington, DC - and a young girl just fell in love with you and played with you on the sand.

Beth and Mike were very generous to us with their house and their love for you. I feel terrible that they have to go through this.

We went to the cemetery on Sunday. It was a great visit. The weather was perfect. Jack was with Matthew at his swimming pool. Mom, Joe and I hung out for a long while. Mom and I cried at different times just thinking about you. Emma and Sam left you little notes tied up in the tree next to your grave.

I left a bunch of your little guys - a tiny race car, a Pokemon coin, a Charmander and some other things - next to the headstone. I stomped them into the ground a bit so the lawnmower wouldn't eat them. I hope they are still there.

Uncle Dan is here. He flew in yesterday in his plane and I picked him up at the airport not too far from where I work. It is nice to have him here. He and your Hannah just flew up to Seattle and went camping. He is a really cool dad, and a great uncle.

Thursday, June 24, 2004

I was just telling Matt Paul about the funny looks we used to get from other parents at the playground when you would cruise through the monkey bars when you were only 4 years old.

Your muscles were made stronger by that medicine you were taking, Anadrol (those tiny white pills) and you could do things that other kids your age couldn't. I remember one mom in New Jersey asking, "Just how old is your son?" You were on the small side which I think added to the confusion.

Strong Baby Is Called a Normal Kid

June 24

By MATT SURMAN, Associated Press Writer

BERLIN - A genetic mutation made a Berlin 5-year-old extra strong, but the German doctor who has been studying the boy since just after his birth says he's just a regular kid.
The boy doesn't stand out among his peers on the playground, but when he puts his mind to it, he can perform feats of strength, said Dr. Markus Schuelke.

"He's a normal boy — you don't see it, you wouldn't recognize him" out of a crowd, Schuelke said. "He can just lift heavy things."

Schuelke started studying the super-strong boy after he was brought to Berlin's Charite hospital shortly after birth because he was twitching.

That turned out to be nothing, but Schuelke, a pediatric neurologist, found that even though the boy was well within normal birth weight, he was particularly muscular.
Schuelke began conducting tests and found over the course of five years that the boy had a genetic mutation that boosts muscle growth.

It is the first human case where a mutant DNA segment was found to block production of a protein called myostatin that limits muscle growth, though researchers discovered in 1997 that they could create mega-mice by "turning off" the gene that directs cells to produce the protein.

Schuelke, who worked with researchers from the United States, wrote about the case in Thursday's New England Journal of Medicine (news - web sites), where he said the discovery could possibly help in the fight against muscle diseases, like muscular dystrophy.

The boy, whose name Schuelke has promised not to divulge, has muscles twice the size of other children his age and half their body fat.

He was born to a muscular mother, a former sprinter. Her brother and three other relatives were also very strong — one a construction worker with a talent for hefting curbstones.

Schuelke said scientists have no way to tell how common the boy's ability is, or if a legion of super-strong tykes will be discovered now that researchers have learned what to look for.

"How should we know?" Schuelke said. "We have the first case so far."

When I was driving home last night I was listening to a special on XM radio that was playing the 100 greatest songs from the movies. The first song I heard was "Maria" which is from a musical West Side Story. I love the song and the movie. The next song was from a movie called Rocky, which is the story of a boxer - a man not a dog. I was feeling really good from hearing "Maria" and got excited for the Rocky music. But when it came on I just burst into tears. What, huh? I wasn't prepared for that to happen. I tried to figure out why and the only thing I could think of is that when the music to Rocky started to play I began to picture you with your punching bag in your hospital room. We had gotten you the punching bag and gloves to keep you active when you were in for transplant. Then when we went back the last time, we requested a bag and gloves again.

The number one song in the movies is "Somewhere Over the Rainbow." It is hard to argue that one.

After I got home, Mom and I took Liam back to his house. Liam and Jack had been playing with your R2D2, the one we bought when we broke out of the hospital for a day back in Minnesota. Remember how it would beep and talk and roll across the floor. I think it is still working on the same batteries that we put in for you. When we were leaving our house Liam asked if R2 could go for the ride back to his house.

Liam's mommy and daddy are in Seattle, where Liam's mom had a bone marrow transplant last summer. Mom and I made two stops on the way to Liam's house. One was to pick up a pizza for one of the teachers from JPDS, who is home on bedrest. She is going to have twins soon and her doctors told her to stay in bed. When we got to 2Amys, which is next to Cactus, we ran into my friend Matt Paul and his wife and their son Jake. Matt has been coming over to the house every week or so to sit and talk. His son Julien died in March. Julien had a transplant just like you. It was nice to see Matt's family out. They live not too far from Cactus. After we visited for a little bit we went and dropped off the pizza. G'veret Epstein was there. Finally, we got to Liam's house and he brought R2 in to show his nanny.

With all of those errands taken care of, Mom and I motored over to Adas Israel for the evening's main event. There was a Engagement Party for Rabbi Winnaker and Doctor Mendelson. I saw one of the doctor's from the 5th floor at Georgetown who used to take care of you all the time. He is very nice and will be taking over as Chief Resident when Dr. Mendelson moves to New York. Dr. Mendelson introduced us to her parents as "Henry's parents." I liked that. She is one of the great ones. I wonder if the story of them "meeting" at your funeral will be in any of the toasts or whatever is said at the wedding.

It was a pretty Henry emotional day for me yesterday. It all started when I read a story in the newspaper about a 13 year old kid named Mattie Stepanek who died at Children's Hospital. I had seen him on TV a little while ago. He was a poet. He also had a pretty bad disease called Muscular Dystrophy. His motto was "Remember to play after every storm."

That made me think of you and the Hope for Henry Foundation. This is the "vision statement" that Mommy wrote for the Foundation.

The Hope for Henry Foundation (“HFHF”) was established in 2003 to create a legacy for Henry Strongin Goldberg, who died at the age of seven from Fanconi anemia, a rare, fatal genetic disease. During his short life, he taught his family, friends, doctors, and all who came in contact with him how to live well and laugh hard – even as he battled a terrible disease. Henry embraced each opportunity for living completely and reminded the rest of us to do so. His sparkly eyes, mischievous grin and infectious smile taught us the importance of maintaining normalcy within the family unit in a life fraught with illness and uncertainty. He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes. He did all these things because at that moment in time he could – and because he knew enough to go when the going was good. HFHF will continue Henry’s magical way of making each day matter.

I never knew that so many little kids die. I am really not feeling up to playing or lemonade stands right now, but I will get it together.

I love you.

This is from the Fairview website. Mom was up talking to the doctors and nurses while you, Jack and I went down to the Turtle Derby. You were in love with the Minnesota Vikings cheerleaders. Two of them in particular, I recall. I think I know where those photos are. I need to ask Mom.

We had a Hope for Henry Foundation meeting at Georgetown last Friday. It made me feel so good to see everyone come out to honor you. (Rabbi) David Abramson and Dr. Wagner were both there but I didn't see Dr. Wagner. Do you remember David's son Louie? He was there too. The Foundation is going to get cool gifts for kids who are being treated at Fairview and Georgetown. Stuff you would have liked.

2004 Turtle Derby will be held June 24, 2004

When children come to Fairview-University Children's Hospital, they are given more than the best health care available. They also receive lots of attention from people who make their stay as comfortable as possible. Weekly family activities, weekly television shows for kids, videotapes and specially equipped wagons for those who can't walk are just some of the special touches provided by the Child Family Life Services staff to care for children their families. Those "extras" often cost money, however, and that's why Turtle Derby is so important.

Since 1987, this annual fundraiser offers fun for everyone. Hospitalized children and their siblings enter turtle drawings in a competition to draw the year's winning turtle design. Turtle sponsors watch their favorite reptile compete for the coveted title of "The Grandest Turtle of All." Clowns mingle with the crowd. Balloon bouquets brighten the stands. The smell of bratwurst on the grill wafts through the air. Commemorative t-shirts featuring the turtle drawings are sold and music plays.

The 18th Annual Turtle Derby, turtle races held each summer to raise funds for projects benefiting kids and their families at Fairview-University Children's Hospital, will be held Thursday, June 24, on Diehl Plaza on Fairview-University Medical Center's University campus.

“George,” this year’s winning turtle artwork, was created by Mathew Odette, 6.

Funds raised through the 2004 Turtle Derby will be used to help create a positive Pediatric Radiology experience for children. A medical playroom featuring child-sized radiology equipment models to familiarize children with exams through exploration and play will be established. Various enhancements designed to relax and entertain children during radiology exams will also be purchased, including video glasses enabling children to watch videos during their procedures, equipment that projects images onto radiology scanners to entertain children, and a portable distraction station featuring fiber optics, aroma and bubbles.

Since 1987, this annual fundraiser offers fun for everyone. Join us!

Photo of the day.

The XM race car came to work yesterday. It was really cool, just like Truck Day at the Gan. Jack and his buddy Liam came to check it out. Liam's dad works at XM too. They had a great time.

Sunday, June 20, 2004

It's Father's Day. You made me a dad. I am thinking about you all day. I love you.

Old Danny Boy Songs For Kids
Little Old Records 1998

Wake Up Little Henry

Wake up little Henry, wake up precious Henry child
Wake up little Henry, sweet and gentle, strong and wild
No matter what the weather, you're our greatest treasure
Words can never measure the sweetness and the pleasure
When we wake up little Henry boy, and see you smile
Wake up little Henry boy, and I see that smile

Wake up little Henry, wake up it's a brand new day
Wake up little Henry, time to feel the warm sun's rays
You seem to comprehend me, so holdin' in my memory
The feelings that you send me in the morning time is when you

Wake up little Henry boy, it's a brand new day
Wake up little Henry boy, it's a brand new day

Came along right on time and we're so glad
You changed a husband and wife into mom and dad

Wake up little Henry, wake up precious Henry child
Wake up little Henry, sweet and gentle, strong and wild
No matter what the weather, you're our greatest treasure
Words can never measure the sweetness and the pleasure
When we wake up little Henry boy, and see you smile
Wake up little Henry boy, and I see that smile

I still don't understand how that guy knew to write such a perfect song about you never having met you.

Saturday, June 19, 2004

School ended for Jack on Thursday. Neither Mom or I went to the graduation ceremony. That was just too darned sad when you were alive. I remember the last one where you looked so sick next to all of your classmates. You never really looked sick to me day-to-day. But that was particularly hard.

Your brother had a good year and brought home a great report card. One of the fun things he did was go spelunking. That is him, second from the right. Pretty cool, huh.

Joe Joe starts at the Gan in the fall. Boy is that going to be emotional. I always cried at Shabbat Sing. It will be hard at first, I am sure. The only truly sad thing is that Aunt Tracey isn't going to be his teacher. She has a different class. Oh well. I am sure she'll look in on him to make sure he is okay.

He is getting very grown up.

I love you big man.

Photo of the day. Beautiful, funny boy.

We need to do a website for the Hope for Henry Foundation. I need to get started on that. Jack is really good at using the Internet. Today we went to a website to get tips on playing Super Smash (Mario) Bros. He was having troubles with his jumps. He got really hysterical because he couldn't jump across something or another. I wasn't too sensitive to his "pain" because I thought it was a silly thing to get upset about. Instead of totally "poo-pooing" (not poop-related) him I told him to look for a solution on the Internet and we did it together. It worked out well.

The Web is a pretty cool thing. Remember that we found the "Blog" written by that woman studying seals in Antartica. The photos were so cool. We checked back each day to see more. That kept us busy for a good 5 minutes in the hospital. That is how Hanging with Henry and these letters got started. I wish I had begun way before that.

July 11, 1996, Thursday

An Infant's Struggle

Megan Rosenfeld and Joe Spencer

One of the most heart-rending home pages we've seen is the one dedicated to Henry Strongin Goldberg, an 8-month-old local child with Fanconi's anemia. This rare genetic disorder (one in every 100,000 births) is a precursor to bone marrow failure and the likely onset of aplastic anemia and leukemia.

His parents, Allen Goldberg and Laurie Strongin, started the page to raise money for research and to connect with other parents and well wishers. So far they have collected $ 68,000 for the Oregon-based Fanconia Anemia Research Fund Inc. They've also gotten much e-mail encouragement. "It was like a message in a bottle that we cast into the cyber-sea. The response has been incredible," Goldberg says.

Henry's Home Page includes articles about the disorder and the support group, and some very cute pictures of Henry and his parents. One of the articles is about a procedure that has helped extend the lives of other Fanconi patients. It is a cord blood transplant, in which blood from the umbilical cord of a newborn is transplanted instead of bone marrow to renew the immune system of the Fanconi sufferer.

Goldberg and Strongin had hoped that their second child, who is currently in utero, would be a perfect match for a transplant for Henry. The good news, they learned recently, is that the fetus is not carrying Fanconi's anemia; the bad news was that the baby is not a genetic match for Henry. However, there are five perfect matches in the national registry of frozen cord blood transplants, and he will be able to get one when it is medically appropriate.

The Food and Drug Administration has recently proposed to regulate this cord blood as though it were an experimental drug, and advocates of the procedure oppose this, saying that such regulation would make it far more difficult for most patients to get it. Henry's Home Page includes material about this debate and a request for readers to lobby the FDA. (July 26 is the last day for comments.)

Goldberg, who is the official webmeister at the National Association of Broadcasters, said he has learned an enormous amount from using the Internet, especially after Henry was first diagnosed and doctors were deluging them with technical information.

Henry has already survived heart surgery to correct a hole that was a result of Fanconi's. He was also born with an extra thumb; many children are born with more severe abnormalities. Except for that, and a somewhat small stature, he is developing normally, and his father says he "has a smile too big for his face."

Ray Charles died last week. He (among others) sings "Over the Rainbow" from the Wizard of Oz. I always cry when I listened to that song. Once we were driving outside of Cleveland - I think we were on our way to Minnesota for transplant - and I was listening to a CD I made with that song on it and crying and crying. Mom and you guys were probably all asleep or something. I played a different version of that song for you in your room in the PICU. Israel "Iz" Kamakawiwo'ole is the guy who sang that one. I don't know if you heard it or heard anything. I hope you did.

They did a story on TV about how loud hospitals are and how it is hard to get better because of all of the noise. You can watch it.

We never got any sleep with all of the beeps and alarms going off all night. That was no fair. The story talks about that and also says that nice music helps you get better. We tried.

One thing that I want to do with the Hope for Henry Foundation is give XM radios to all the kids going through transplant. I think that XM Kids will be a lot of fun for any kid sitting in the hospital. Aside from fun songs like Poop Goes the Weasel, XM has bingo, just like the hospital bingo you used to play on Thursdays in Minnesota.

I went to Chicago this Saturday for the day last weekend. It was a meeting of Fanconi anemia families that raise money for research. Mom and I definitely think it is important to continue to help and make sure that it is easier on all families that come after us. I hear from Dr. Auerbach that Memorial Sloan Kettering Hospital in New York is having a lot of success with tough Fanconi anemia transplants.

I hadn’t really thought about the meeting much before I got there. When I walked in I was surprised to see Molly’s parents. I like hanging out with Molly’s dad, Jack. He is a super guy and I wish I talk to him more.

When we all went around the room to introduce ourselves, everyone said who they were, who they were married to and who were their children. When we got to me, I said I was Allen Goldberg, and I am married to Laurie Stronging, but I just couldn't say your name. It wouldn't come out. Tears were all ready to come out but not your name. I just couldn't do it. I pointed to the man next to me hoping he would just continue by introducing his family and he did. I am sorry. The thing I wanted people to know the most was that I am the father of Henry Strongin Goldberg, Jack Strongin Goldberg and Joe Strongin Goldberg.

They gave everyone who was there a handbook with ideas how to raise money. I looked through it and saw all of these things that we used to do.

One time Dr. D'Andrea came and spoke at Aunt Abby and Uncle Andy's house. Also, we did one of the first celebrity charity auction on Yahoo. And there was one fundraiser where everyone had dinners at their homes, invited friends, watched a video about you and then joined up later at Temple Sinai. That was a good one. You had a great time.

February 11, 1999, Thursday, Final Edition

For-Giving Technology

Shannon Henry

A Washington technology executive is using everything he's learned about computers and networks in a personal project that couldn't be more important: saving his son's life.

Allen Goldberg of launched an online charity auction yesterday to raise money that will go toward researching Fanconi anemia, a rare disease that his 3-year-old son, Henry, has had since birth.

Hosted on Yahoo and running through Feb. 24, the auction is a philanthropic version of the now ubiquitous commercial online auctions. Yahoo entered the auctioneering business in September and has so far held 20 online charity events. It holds the auctions for free for those with a nonprofit status, says Karen Opp, Yahoo Auctions Producer.

Those who log on to and click on its auctions section can bid on 100 or so items that Goldberg now has in his basement, including a jacket formerly owned by singer Mary Chapin Carpenter and a tennis racket signed by Gabriela Sabatini.

Goldberg hopes the auction will raise $ 7,000 to $ 10,000, all of it to go to the Fanconi Anemia Research Fund in Eugene, Ore. "It lets us reach as many people as possible," says Goldberg.

When Henry was born and diagnosed with the disease, Goldberg, then Webmaster at the National Association of Broadcasters, used the Internet to research what is still a little-known condition. Only 1,000 or so people, mostly children, have the disease. Soon after Henry's birth, Goldberg and his wife, Laurie Strongin, created a Web page,, to keep friends and family updated on his health and encourage donations to the Oregon group. About $ 150,000 has so far been raised through the site.

Children with Fanconi anemia are usually born with myriad birth defects. The genetic condition can cause bone-marrow failure; the life expectancy for a child with Henry's type of the disease is four years.

"The clock is ticking," says Goldberg.