Wednesday, September 29, 2004

I was listening to the radio on Monday and they had a story about a young man, a soldier, Tyler Hall Brown, who was killed in the war in Iraq. Tyler's mom and brothers and friends talked about him. He sounded like a really great guy.

The last part of the story was Tyler's dad talking. He said, "He truly was the finest young man that I ever knew...," and when I heard that I thought it was nice of him to say -- and understood why he said it -- but I also worried about Tyler's two brothers and if they would think that their dad didn't think they were as great as Tyler.

But then Tyler's dad finished his thought with " the point I would look at Tyler and say 'I want to be just like my son.'"

I feel that way about you.

At the Yizkor memorial service on Yom Kippur this weekend, Mom and I said a prayer that says we will honor your memory by doing acts of charity. The Hope for Henry Foundation is going to have a fundraiser next month. We are going to invite everyone to go to Butlers Orchard and have a hayride and bonfire. It will be about a week after your birthday.

The money we are raising is going to help boys and girls and their families in the hospital. Georgetown asked us for computers for the clinic. I know Jack was always frustrated by the computers they have there because they didn't work too well. This will be a good thing to do.

I went to Georgetown yesterday morning and dropped off bandaids and toys for the treasure chest. It was good to see everyone. They said it is really busy there, which isn't a good thing. It means there are a lot of sick kids.

I found out this week that my cousin Bernie and my really good friend Sue are sick. I am worried about them. I don't think you ever knew Bernie, but he is my first cousin, like Michael, Rachel, Joshua, Hannah, Emma and Sam are to you.

I called them yesterday to talk to them. I feel pretty helpless, but at least I can talk to them. I hope that helps. I know you were good about that kinda thing. I am thinking about how much you wanted to help Simon after his father died.

Being like you is a good way to be.

Sunday, September 26, 2004

I don't know if I ever want to use these but I thought it would be a fun thing to do. I think they only put people who have died on U.S. stamps.

Maybe I can send a letter to Karen and Chip in China and have them send it back. That would be a cool trip.

We'll see.

We all went out to the cemetery yesterday.

Thursday, September 23, 2004

Last night Mom and I went to Back-to-School Night at JPDS. I don't normally say anything at these things because I trust that the teachers know what they are doing.

Jack's journal and other writing assignments were on his desk. We were asked to read through them to see what he is writing and learning. He filled out something that looked like a MadLib that was a paragraph about his family. He completed the sentence that read, "I live at home with ________ and __________.", by saying "my parents and my brother."

Later, when Jack's Hebrew teacher explained that the first theme for the class was "family," I wasn't too concerned whether that would stir up emotions in Jack that might be hard or sad. Last year he drew pictures of his family with you in them. The person who was helping Jack with his feelings about you told us it would show progress for Jack when he didn't include you in pictures of his family. Good to know but hard to hear.

By writing "my parents and my brother," instead of "brothers" I know that Jack is in an okay place. He has figured out how things are, where you are (wherever that is) and doesn't appear to be too sad or confused.

But when the Hebrew teacher told us that the next theme was going to be hospitals and being sick, I wrote Mom a note that said I want to ask her to consider something different. I want to talk to Mom about it a little more, though. Maybe it won't matter to Jack at all, or maybe it will be a good thing for him to face head on. I don't know.

Using Technology
To Mourn the Deceased

When an E-Mail Inbox
Outlives Its Owner

September 23, 2004; Page D1

In the weeks after 14-year-old Zachary Edelson died in a drowning accident, e-mails continued to arrive in his in-box. The messages came from classmates, camp friends, basketball teammates -- most written directly to Zach. The kids reminisced about their adventures with him, and promised to always remember him.

"They never would have sent these letters by regular mail," says Zach's father, Alan. "But by e-mail, it felt like they were trying to communicate with him. It was a dilemma for us: How long would we keep his e-mail account open?"

This sort of issue didn't exist a decade ago. But technology is presenting new challenges for grieving families. Zach's parents and two brothers are among those still feeling their way, trying to decide which facets of popular devices such as cellphones and e-mail are helpful in the mourning process -- and which ones exacerbate their losses.

Zach died in 2002, and his parents still can't bring themselves to remove him from their online buddy lists. Whenever they log on, Zach's screen name pops up: "Snoopy1372." Likewise, Zach's phone number remains in Mr. Edelson's cellular phonebook.

"Seeing Zach's name every day is both a comfort and a painful reminder of my loss," says Mr. Edelson, who owns a furniture company in Bloomfield Hills, Mich. "But if I deleted him, it would be another loss."

Many families today routinely create Web memorials following the death of a loved one. Though some of the 50 Internet firms that market online remembrance sites seem gimmicky -- sends your final e-mails to relatives after you die -- others are starting to change the way people mourn and recover.

Some older widows and widowers who at first were intimidated by today's technology now embrace it. In St. Joseph, Mich., Bonnie Neumann often logs on to, and visits pages in memory of her husband, John, who died in 2002 at age 69. Perusing Mr. Neumann's online photo gallery and reading comments posted by his friends "brings John back alive for me," Mrs. Neumann says. The site costs $200 for two years.

In Chappaqua, N.Y., Beverly Dubs says her late parents, both immigrants, were never tech-savvy. Ms. Dubs's mother used to ask: "What are those Dutch-coms I always hear about?" And yet, since losing both parents in recent years, Ms. Dubs has found consolation via the Internet. Visiting a Web site about her dad's hometown in Poland, she found a photo of him as a young man, and details about his life that he never shared with loved ones.

America Online customers sometimes ask if they can assume the accounts and screen names of deceased relatives, and the company allows that, says an AOL spokesman.

In the case of Zach Edelson, he was with friends in a motorboat on Michigan's Walnut Lake when a gust of wind lifted a large inner tube out of the boat. The tube's line wrapped around Zach's leg, pulling him into the water and banging his head against the boat. Investigators believe he lost consciousness. Without a life vest, he sank quickly.

For three days, divers couldn't find his body, which wound up 70 feet below the lake's surface. After friends and relatives blitzed the community with e-mails, 400 people gathered on the shore to show their support.

Mr. Edelson stood on the shoreline, too. He used his cellphone to call Zach's grandparents -- "I have the worst news," he told them. It occurred to him, as he spoke, that a cellphone was a valuable but impersonal gadget to have at such a desperate time. He used the phone again to ask a local TV news station to send away the helicopter that was hovering over his head. (The TV station declined to move the chopper.)

Mr. Edelson saw many others on the beach using their cellphones, too. He knew they came because they meant well, but it was surreal watching them conduct their lives while he waited for his son's body to be found.

The night before Zach's funeral, his older brother, Jeff, wrote his eulogy in Zach's room, on Zach's computer. "I wanted to be surrounded by things that were special to him," says Jeff, 21.

For months after that, Jeff's AOL Instant Messenger "away message" to friends, which he continually updated, was often a note about how he missed Zach. It was painful for him to speak out loud about his loss, says his mother, Wendy Talan. "This was his way of talking about it."

The e-mails friends sent to Zach after he died described him as smart, sensitive, creative, funny. One boy revealed that, when they were 13, he and Zach took his parents' car for a secret joy ride. Many called Zach their best friend.

Later, when Mr. Edelson turned to his computer for solace, he was disappointed. He typed "drowning of a child" into Internet search engines, and found many entries. "You think the stories will make you feel better, finding people who suffered like you suffered, but it wasn't helpful," he says. "It was just sad."

Zach's mom now uses his computer, and she struggles with memories of him at the keyboard, happily tapping instant messages to his friends. But she's moving forward "with baby steps," she says, and using Zach's computer is part of that process.

Meanwhile, Mr. Edelson recently switched cellphone plans, and loaded his saved numbers -- including Zach's -- into his new phone. "I can't imagine hitting the delete button to erase his name," he says.

He feels the same way about Zach's screen name on his computer. "My buddy list shows that he's off line," Mr. Edelson says. "But in my heart, he's always on line."

• E-mail: Read Moving On columns at

Monday, September 20, 2004

We went to your cousin Melissa's Bat Mitzvah this weekend. It was in Charlotte, North Carolina.

This was you Michael and Melissa eating ice cream who-knows-where.

Hey, Chocolate Face. We eat a lot of chocolate in this family.

And this was at Catherine and Tim's wedding. Catherine is pregnant.

Toward the end of the Bat Mitzvah they remembered all of the family members who had died and couldn't be with everyone to celebrate, like Melissa's great grandparents. The Rabbi even said your name, however she said it "Henry Strongin," and left out the "Goldberg."

I felt for a moment like you were taken away from me again just a bit. It wasn't anyone's fault. Hearing your name like that made me feel like you weren't mine. I got over it.

The rest of the festivities were nice. They had a slide show of Melissa's life which had those two photos of you. I was outside watching Joe and missed it. Mom was inside and left before they even got to the slides those photos. She was sad. It is hard for us to watch a kid grow up like that.

Speaking of growing up - it was Joe's first day of nursery school today. He went to the Gan and stayed for a whole two hours before his class let out for the day. They stay longer from now on. He seemed very happy when we left. Just like his two older brothers he did not make a fuss when Mom and I walked out the door without him.

He was very grown up. I was worried we'd be sad. I asked Mom probably 3 times this week, "Do you think it is going to be hard?" The only hard part was getting him to stand still for a good picture.

Tuesday, September 14, 2004

I always find coincidences interesting. At work today I received a letter that included this:

the same day that I was asked to read an article that someone is writing about the people I work with that says this:

Quincy Jones, Spike Lee, rap star Nelly and concert artist Keiko Matsui have lent their voices. So have NASCAR greats Jeff Gordon, Terry Labonte and Scott Riggs.

Their message: Support the search. Become a donor. Save a life.

Their medium: Radio public service announcements.

Their goal: New marrow and blood cell donors, particularly from ethnic and racial groups, join the National Marrow Donor Program (NMDP) Registry.

Produced by XM Satellite Radio for the NMDP and The Marrow Foundation, the public service announcements are just one example of the power that a workplace partnership can bring to marrow donor recruitment.

To create the public service announcements, XM Satellite Radio, the nation's leading provider of satellite radio with well over 2 million subscribers, leverages its relationships with celebrities and its state-of-the-art recording studios. The compelling and often emotionally poignant spots are readily available to radio stations nationwide to download from a customized website, Individuals, too, may download the PSAs and forward them to their local radio stations to promote donor drives.

In addition, XM Satellite Radio conducts donor drives among its own employees; actively encourages its business partners to appeal to their employees to join the Registry; and sponsors events to raise awareness of the important work of NMDP and The Marrow Foundation, such as the Unity Conference, which every four years brings together the nation’s minority journalists. These activities have met with significant success. A quarter of XM’s nearly 500 employees have joined the Registry, half of whom are of diverse backgrounds. And recently, the Delphi Corporation, XM’s largest manufacturing partner, has agreed to sponsor an employee donor drive.

For two XM Satellite Radio executives, President and Chief Executive Officer Hugh Panero and Director of Branding and Communications Allen Goldberg, the partnership is especially personal. Hugh’s wife, Mary Beth Durkin, successfully fought leukemia with an unrelated marrow transplant in June 2003, the search for which was facilitated by the NMDP. With good health and great joy, Mary Beth has just watched her children Liam and Sophia go off to second and sixth grades respectively.

Just before Allen joined XM Satellite Radio in early 2003, his seven year-old son, Henry, died from complications of graft-versus-host disease, two-and-a-half years after a bone marrow transplant. Their experiences, as well as Hugh’s membership on the board of The Marrow Foundation, inspire the company’s commitment.

“My goal is that XM plays a major role in bringing awareness to the NMDP,” says Hugh. “Our role should be to build awareness that the NMDP saves thousands of lives every year so that people can feel good about contributing to build a donor base or fund research to cure the blood diseases.

“There are a number of advancements on the horizon that promise to be very powerful – and they are advancements in which the NMDP and The Marrow Foundation can play strong roles. But one of the first big steps is building awareness of these two organizations. I think an entertainment company such as ours can help facilitate that.”

“Every company can make a difference in the Registry. Small businesses like ours can make an impact in just the same way that larger ones can,” says Chance Patterson, XM Satellite Radio’s Vice President, Corporate Affairs. “It’s pretty simple to do. You get the word out about the Registry, explain to people why it’s important and it sells itself.”

Because of his son’s illness, Allen and his wife had conducted a donor search through the NMDP. Joining XM Satellite Radio soon after Henry’s death and helping to produce the company’s public service campaign and attracting more donors to join the Registry helped buffer the pain of his loss.

“In only my first week at work I unexpectedly found myself sitting across a conference room table from representatives of The Marrow Foundation and NMDP,” he says. “I thought, ‘What an incredible opportunity for me to do something in my work that means so much to me in my personal life.’”

“My dream is that this partnership will save lives -- that we can bring hope to families who need it the most.”

I need to be better at this. Photo of the day.

More stuff to make me smile.

Monday, September 13, 2004

Lisa wrote a story about a boy named Thomas that appeared in the magazine where she once wrote a story about you and Molly.

It was a really wonderful story. I started to cry when she told how Thomas' daddy taught his class about the disease that Thomas has called Cerebal Palsy. I didn't stop until well after I finished reading it.

Thomas and his Mommy and Daddy are all very special people. We are all lucky to have Lisa tell our stories.

Protester dressed as Batman scales Buckingham Palace
By Associated Press
Monday, September 13, 2004

LONDON - Yes, that was Batman scaling up the front wall of Buckingham Palace today.

At least a protester dressed as the caped crusader.

Other protesters and witnesses say the man reached a ledge near the balcony where the royal family appears on ceremonial occasions.

The protester, a 33-year-old man, belongs to a group that seeks greater custody rights for fathers.

No member of the royal family was at the palace.

A spokesman for Fathers 4 Justice says the protest was timed to coincide with the trial of another member of the group, who is accused of throwing purple flour at Prime Minister Tony Blair in the House of Commons in May.

Thursday, September 09, 2004

We went to parent's night at The Gan last night. I told Mom that I kept drifting in and out of being sad. At one point I did get teary but I was okay most of the time. After a big assembly we went to Joe's class and met with Cheryl and Jane his teachers. Cheryl teaches there because she was our friend and Mom told her she should check out the school. And you went to The Gan in the first place because Jane was our neighbor and suggested we take a look. One other cool thing is that Scudi is the nanny for one of the other kids in Joe's class. Mom thinks she is going to freak out when she sees Joe and how much he looks like you. Aunt Tracey is teaching there again so it will be great to see her all the time.

Before we left Mom and I went upstairs to see your memorial plaque. We've looked before and haven't been able to find it. I had asked someone where it was so I knew where to look this time.

The really nice thing is that you are on the same column as Allison Atlas. It was just the anniversary of her death. That is why the lights are on next to the plaque. I am glad we found you.

Tuesday, September 07, 2004

Today was Jack's first day of school. He is in the second grade. His teacher is Mrs. Kaye. I know that you were a big Mrs. Kaye fan. He was very excited. It was cute.

This weekend we went to St. Michaels. I was riding my bike back from the Oxford ferry when all of a sudden I started to picture you. It was an image that has been on my mind lately. You'll remember this: you, naked, on your back with your hands under your bent knees, jutting your feet into my face and demanding, "Smell my stinky feet!" I smiled. I have been waiting for the time when I would think of you and not cry or get sad. This was it. Finally.

Simon and Alex were out for a lot of the weekend and Ari came for a short visit. Simon and Ari have become big. They are boys now. That would have been you.

Mom got sick while we were there. It is the second time that she has had a fever since I've known her. I felt very bad because there wasn't much I could do for her. Then Joe got sick and it freaked me out a bit. Mom and I talked about it and we cannot remember him ever being sick. Fortunately, he has Mom's good never-get-sick genes.

Joe is about the size you used to be before you died. He'll be 3 years old next month and he weighs 33 pounds. You were 7 and weighed in the middle and upper 30s. I seem to remember you weighing 36 lbs. for some reason. We weighed you every time we went to the clinic. You'd think I would know exactly how much you weighed considering we were at the clinic a few times a week.

Last night and this morning when I held your little sick brother his size and weight reminded me of you; his fever and how hot his body got reminded me of you; and his bad cough was the icing on the cake. He feels so bad that he cannot do much except to lay on our bed; drift in and out of sleep; watch Lion King and look sweet and pathetic. When I came home tonight to find him laying on our bed, with his face flushed and hair brushed to the side I couldn't help but think how much he looked like you.

But there is one important difference. Even though he is sweating a lot his feet aren't stinky. He's got a ways to go.

Thursday, September 02, 2004

Tonight Mom read Jack an Encyclopedia Brown story while we drove over to David Abramson's parents' house to pay a shiva call. Mom read about a man who was an "organ grinder." Jack said, "that's gross." Jack thought an organ grinder was something that chews up your heart and liver and all that stuff. We explained to him that an organ grinder is a kind of musical instrument or music maker.

Sadly, David's dad died. It was nice to see David and Sandy and Louie, Joey and Ben. They've all grown up so much since we were in Minnesota.

Today is the 2 year anniversary of you getting out of the hospital after you almost died. I found this email that Mom wrote about what happened. Officer Craggette was the policeman who carried you down from the house into the police car in the blanket.

You started school the next day - September 3. You were a tough guy alright.

-----Original Message-----
From: Laurie Strongin []
Sent: Monday, August 26, 2002 1:42 AM
To: Friends of Henry
Subject: Worst Yet and Hopefully Ever
On Saturday morning we almost lost Henry.

At 10:30 a.m. Allen finished giving Henry his morning medications upstairs in our bed and left to pick up his father who had just flown in from Alaska. Henry was very groggy (as were we) from being up all night with uncontrollable diarrhea and settled into what appeared to be a mid-morning nap. I checked in on him and went downstairs to continue playing in the basement with Jack and Joe. For some reason, motherly instinct, whatever, about 40 minutes later I came back upstairs just to peek in on him again and that is when our world fell apart and I found myself alone in the single worst moment that anyone should have to experience.

Henry was motionless, his body was deep purple, his eyes had rolled back in his head and he did not appear to be breathing. The rising and lowering of his scarred but proud chest was absent. I screamed at him to get up, to breathe, to talk. Nothing. I shook him. Nothing. I screamed and fell to the floor. I called 911, then our neighbor to come and take care of Jack and Joe, and Allen in that order. I told Allen, who was 20 minutes away in Maryland still in the car with his father, that I believed Henry was dead or close to death and that he should meet me at Georgetown Hospital. I won't even pretend to admit that I kept my calm, but through the chaos, I did what I had to do. Henry was either dead or near death and I was shouting at him to wake up, at the 911 operator to get us help, at my neighbor to come quick and to Allen that I didn't know where he was and I was alone and our boy was dead.

Less than 2 minutes passed before a DC police cruiser pulled up to the house. A policewoman quickly assessed the situation and decided that we did not have enough time to wait for EMS workers to arrive. Henry’s pulse was barely registering. We wrapped Henry in a blanket and raced down to the hospital only a few blocks away in their squad car with its siren blaring. It was surreal and scary and insane as we rushed through the Georgetown Hospital ER doors to the awaiting team of doctors, nurses and techs who grabbed Henry, threw him on the table and got to work. I didn’t know if he was dead or alive.

Meanwhile, Allen was running lights and careening around the beltway and down Canal Road at speeds that would make the most aggressive driver blink. While still 5 minutes out, he got a call from the Georgetown ER asking how far away he was. They explained that he should focus on getting there as quickly as possible to help me make certain "difficult decisions." This was the first sense that he got that Henry might still be alive.

In the ER, a breathing tube was stuck down Henry's throat; IV's were inserted into both arms. The doctors and oxygen and drugs went to work. Henry’s purple color quickly changed to pink. It was determined that Henry was "seizing" and was given large doses of sedation to stabilize him. The faces in the ER, to our relief, were very familiar. In addition to the Hematology/Oncology folks, who see Henry a few times a week and had been alerted to his emergency status, the ER Attending Physician just happened to be the mother of one of Henry’s friends from camp. Not only did she know Henry and us, but she was exactly the kind of doctor you want running the Emergency Room team that was going to save your son’s life. She was calm and confident and that gave us confidence that he’d make it.

An x-ray was taken and tossed up on the wall. The tech stared in disbelief at the amount of trauma he saw. “What has this kid had done to him,” he asked. I stopped sobbing long enough to rattle off “tetralogy of Fallot” repair of the heart, a lung biopsy, two liver biopsies, two Hickman catheters, a g-tube; and then prayed that despite the length and brutality of that list, they could still do everything they could to keep this special boy going. He might be really sick, but just one day before he saw a movie with his two best friends and left me a voicemail message to let me know how happy he was and how much he loved me. Henry was looking forward to 1st grade in a week and had been so excited to pick out his school supplies at Target a few days earlier. He wasn’t ready to die and we weren’t ready to lose him.

After the x-rays, CT scans, spinal tap, and blood and urine cultures were done, we were transferred to the Pediatric Intensive Care Unit where we are still. He is stable enough that they were able to remove him from the ventilator today. No-one knows how long Henry’s brain was deprived of oxygen and we feared he may have sustained some kind of damage to his brain. When they removed the breathing tube, we smiled a lot (while crying a little to ourselves) after Henry spoke his slightly slurred first words and answered our battery of “tough” questions about dates and people and places. We should know there is no way Henry is going to forget how many days until school or weeks until his birthday.

We still don’t know what stopped Henry from breathing and he, and we all, are scared that until we figure out why this happened that it could happen again. For the first time, Henry and we talked about his fear of dying and specifically of not being able to breathe. We cannot shelter him from the reality of that possibility, so we’ll stay focused on what we can do to try to ensure that that doesn’t happen. Even though I have feared the loss of Henry almost every day since he was born almost seven years ago, my defenses have always been sufficient enough to disallow me from really understanding what the moment of that loss would be like emotionally, spiritually, physically. Now I know and it’s so much worse than I could ever describe. So much so that I can’t get out of my mind the picture of how Henry looked when I found him and can’t stop thinking about what’s coming. All I can say is that I don’t think I can ever do that again, but then, again, I’ll do what I have to and do it the best I can.

Thankfully, with all of the yelling, police cars and drama upstairs, down in the basement Jack doesn’t seem to have heard anything that happened. Power Rangers and Digimon re-runs were obviously a lot more engrossing. Jack is now spending the week at the beach with my sister, her husband and their kids, blissfully oblivious to the horrifying turn our life recently took, as he should be. He’s only five.

Prior to this episode, Henry spent the end of July and early August as an inpatient here at Georgetown, where he was treated for a myriad of problems related to the chronic graft versus host disease that is a complication of his bone marrow transplant. We continue to face a tremendous challenge fighting the cGVHD, which affects his skin, his gut and his liver -- but for right now we’re overjoyed just to sit at Henry’s bedside watching his blankets rise and fall with each precious breath.

When I found that email, I also saw this one that I had written just a few weeks earlier. Sometimes I wonder how two people can look at the same exact thing and one person knows that it is white and the other person is certain that it is black. Reading these emails and knowing that back then I was certain you were going to live helps me understand how people can look at the same thing and see it differently. I don't know if that makes sense to you.

-----Original Message-----
From: Allen Goldberg []
Sent: Wednesday, August 14, 2002 5:34 PM
To: Allen Goldberg
Subject: Henry Update

Hopefully most of you will not see this email for a number of days or weeks until after returning from sandy, sunny places. But if you are around and have been trying to reach Laurie, me and the guys, this is to let you know why we haven't gotten back to you. Henry spent the end of July and early August as an inpatient at Georgetown University Hospital, where he was treated for malnutrition, dehydration, infection and a little kidney failure thrown in for good measure. While an inpatient, Henry had a feeding tube surgically implanted into his stomach and had five teeth extracted (they had broken down from the chemo he had for his transplant). This is all on top of Henry's chronic Graft versus Host disease, which is being treated by an experimental protocol courtesy of Johns Hopkins University Hospital. Because of Henry's most recent hospital stay we had to cancel long-held vacation plans to travel to Maine, where we to do some whale watching and attend the annual Fanconi Anemia family camp.

When Henry was released from Georgetown a little over a week ago we decided to salvage the summer by heading down to the Delaware shore, where there might not be any whales but you can find plenty of caramel popcorn, mini-golf and soft serve ice cream with sprinkles. As luck would have it, we made it five whole days before more of the same sent us packing for home and Georgetown Hospital. Just last night Henry had a fever and complained of severe pain in his side and back. Drs. Goldberg and Strongin both came to the same conclusion -- pneumonia. So we left the beach and now Henry is back in his regular room at Georgetown and we are awaiting confirmation of our all-too-experienced layperson's diagnosis.

Sadly, Henry must prove once again that he is the very definition of resilience. Amazingly, it has only been recently that he has begun to shown signs that all of this is getting too much to take, but we know he will rally. Below are two photos taken two weeks ago (hospital) and this past weekend (vacation). No matter how hard the challenge, the smile shines through. We'll get back to you with some good news soon.