There is something that is really big these days online called Facebook. Your brother Jack just got started tonight. I know this might sound strange, but he is now Facebook "friends" with your friends. Jack also became friends with cousins Michael, Hannah and Emma. He is "chatting" right now with Sam Shoyer.

Here is something that Emma posted yesterday. It appears you're on Facebook too.

I haven't written in a while. There is a lot going on. As I always say, "just 'cause I haven't written doesn't mean I'm not thinking of you."

We had a vacation and an Inaugural since I last wrote you. I'll get you caught up soon. Sorry.

Inaugural (Cold)



Vacation (Warm)

How terrible/crazy is it to see these both in the newspaper on the same day. Actually, the same thing happened before. I will look back and find that.

Unfortunately, we know that whole ventilator/University of Minnesota thing. Let's hope for a good outcome.

Home builders create a special place for Dylan
By HANK DEWALD
HERALD STAFF WRITER

GASTON – When Dylan Moore and his family return from Minnesota where he is receiving treatments for the rare disease, Fanconi anemia, they are in for a big surprise thanks to a few special people and the Roanoke Valley Home Builders Association.

Since the progression of his disease has severely weakened his immune system, Dylan, who has always had to share a bedroom, will need his own separate room and modifications made throughout the home, said Joey Elias, president of the builders group. The main problem was the Moore’s home just wasn’t big enough to create a separate special area for Dylan.

There was, however, a nice carport attached to the brick home. It doesn’t take much imagination to guess what the group of builders decided to do with that carport, but most would think one simple bedroom. What the group has done is transform the carport into a bedroom suite, complete with its own bathroom and closets. The suite is attached to Dylan’s parents’ bedroom through their bathroom, with a separate laundry area and hallway entrance that now exits into a new bricked-in carport.

Elias and several others were busy putting the finishing touches on the construction Friday, installing trim work and getting everything ready to paint, a chore planned by the Moore’s family and friends. “This wasn’t all our idea,” Elias quickly pointed out. “The people behind all this have done a lot more and they really don’t want to be mentioned. It’s just that we, as a group, try to do something like this, at least one project each year, so when they contacted us, we jumped right in.”

When he says “jumped right in,” he wasn’t kidding. The group of RVHBA members and friends started the work on the Moore’s house the week before Christmas. What the group of builders has accomplished is amazing. “We’ve got people who are involved in home building from every trade, so I feel badly that we are here now, because we just got here,” Elias said of the group working on Friday. “All of the others did most of the work.”

Elias said Mike Copeland did the framing, Rightmeyer Equipment Rentals provided all the landscaping and heavy equipment used and most of the concrete work. Lloyd’s Decorating Center donated the paint supplies and will help with the flooring. Weaver Insulation donated all of the insulation and Bill Freeman Roofing donated all the labor to seamlessly blend the new roof in with the existing one. “Once again, I feel badly because I know I’m leaving out so many people who have been involved in Project Dylan,” Elias said.

There is one big push going on now to finish the project because the Moores are expected to return home by the end of January. Elias and the guys working Friday were a whirlwind of activity. Once they are out of the way, the final painting will start and the flooring will be installed. The finishing touches will be the landscaping, which John Pittman Landscaping will handle.

What the Moores see when they get home will surely amaze them.

With Dylan’s special needs, this group of builders has made life much easier for the Moores. Elias said it is just another example of how caring people are here in the Valley. “When we heard about the family in need, we all just came together and got it done. The one’s who called us are the one’s that deserve the credit, but that’s just the kind of people they are,” said Elias.



Moore family requests prayers as Dylan worsens
By DELLA BATTS
Daily HERALD STAFF WRITER


FAIRVIEW, MINN. — The family of Dylan Moore is asking for prayers as a new mass was found behind his heart this week and he is now in intensive care, once more on a ventilator.

The 8-year-old child was reportedly scheduled to leave the University of Minnesota Children’s Hospital in seven days, and the family had been counting down until the time when they could all be reunited.

His mom, Betsy, on the family Web site, caringbridge.org/visit/dylanmoore, said, “I can’t believe that in seven more days, we should be home. Here we sit in ICU praying harder than we ever have before that we will all eventually come home well.”

Moore was born with Fanconi anemia, a rare genetic disease, distinguished by short stature, skeletal anomalies, increased incidence of solid tumors and leukemias, bone marrow failure and cellular sensitivity to DNA damaging agents such as mitomycin C. He recently underwent a bone marrow transplant.

Moore’s most recent tumor effected his heart and lungs. He is on chemotherapy now, in hopes of shrinking it quickly, but according to Betsy, Fanconi patients don’t fare well with chemotherapy. “We pray that he will not have to have any more radiation because FA patients do not tolerate it well. If the mass hasn’t decreased he will have to have more treatments to shrink the mass until the treatments, the T-cells, or Dylan’s immune system can fight this.”

Moore’s Web site has daily updates on his condition and allows messages to be sent to him and the family. The family said to please continue to send messages as they mean so much to her son. “Thank you all for all of the prayers and support. It means so much to us. Dylan wanted to hear all of his messages tonight so I read him every one. Your support has really helped. Keep the messages coming. We love to hear from all of you.”

Hen, this is how our world went from perfect to topsy turvy. The only thing you don't hear in this video is the sound of the timebomb starting to tick.

Nana unearthed this video when we were out in St. Michaels for New Years. It was your Yahrzeit, the 6th of Tevet. This was incredibly hard for me and Mom to watch. It was the first time we'd ever seen it. All of a sudden the future goes from innocent and bright to dark and scary.


Welcome to the world beautiful Henry from Allen Goldberg on Vimeo.

Well, at least I knew you were going to be a girl. I don't remember that Mom thought you'd be a girl. Way to prove 'em wrong, boyo!

Published/Last Modified on Friday, December 26, 2008 11:03 AM CST


Dylan shows signs of improvement
Della Batts, Herald Staff Writer

ROANOKE RAPIDS— After two months, Dylan Moore is starting to show progress in his recovery from a bone marrow transplant he received in October. Moore, a 7-year-old who has stolen the hearts of all who know him, suffers from a rare form of anemia, Fanconi anemia.

Family and friends have rallied to support the family, and several fundraisers sponsored by the Eagles Club and many others were held to provide for the family during Moore’s lengthy illness.

Moore suffered from kidney failure early on after the procedure and had to endure dialysis daily. He recently developed an infection, similar to mono, and was put on a respirator. High fevers and  unanswered questions plagued the family as everyone held their breath and prayed for a miracle.

Moore was finally removed from the respirator about a week before Christmas. Worry still prevailed however, as his kidneys still refused to function.

Early Christmas Eve morning, prayers were answered as Moore’s kidneys functioned for the first time since his surgery. “It was only a little and it was the color of coffee … This is a very good sign that his kidneys are trying to work some!!!!” wrote his mother, Betsy.

She went on to say that he is still having trouble with the dialysis, his blood pressure jumps all over the place, his heart rate slows to unthinkable levels, and doctors don’t understand why he has such sever reactions. Perhaps the new developments in his recovery will negate his need for dialysis soon.

In the meantime some of his family has come in and he will be able to see them for Christmas.

December 18, 2008, 2:40 pm

Life After Losing a Child

By Lisa Belkin

I met Allen Goldberg more than eight years ago, when I wrote an article about his son Henry and the fight Allen and his wife, Laurie Strongin, waged to save the little boy’s life. They lost, and Henry Strongin Goldberg died six years ago this month, at the age of 7.

Allen chronicled Henry’s last days in a blog, and, after his death, wrote letters to the boy. At first there were several a day. As Allen healed, the letters were less frequent but still steady. They brought Henry news, mostly about his younger brothers — Jack, now 12, who was his best friend, and Joe, now 7, who was only a year old when Henry died.

What follows is a letter from Allen to Henry, about keeping memories alive. It’s about the ache of parenting when one of your children is gone, about creating memories, and about introducing your youngest son to the older brother he never really knew.

By ALLEN GOLDBERG

Dear Henry —

I made a space on Joe’s night table for that photo book of pictures of you and him together. It is right next to his iPod, his Spongebob early reader books, his mini footballs and assorted baseball cards. As far as I’ve noticed, he doesn’t look at the photo book. I can’t blame him. It is pretty thin.

After you died I don’t think I gave a whole lot of thought to how Joe would remember you. Mom and I have seven years of memories of living, loving and trying to save your life, all laser-etched into our hearts. You and Jack had a special relationship that I know he treasures, and that I captured in hours of video and albums full of photos of the two of you on the beach charging into battle shoulder-to-shoulder against imaginary dragons and laying around hospital rooms. He knows you, and he misses you in his own way that I can’t even begin to understand.

But for Joe, he never got to throw a ball with you or make a snowman with you in the front yard, or stand in front of the TV when you were trying to watch so you could point out in true Henry fashion, “Hey, Joe, you make a better door than a window.”

Joe is now exactly as old as you were when you and I made that last father-son trip to Minnesota. Your doctors were only going to fine-tune your meds then, not show me how to remove a breathing tube so you your life could gently come to a close in Mom’s arms. But it all went very wrong very fast. At age 7, you were old enough to understand how sick you were, and maybe you were aware that you might die. Mom used to think that after a time you were making it O.K. for us to let go of you. Either you were wise beyond your years, or there are things in the way life and death work that we don’t fully understand.

Making the photo book for Joe added a new dimension to the sadness I feel about your death. Joe is now very aware that he didn’t have enough time with you; the lack of photos of the two of you together underlines that sad truth. “Brothers: Joe and Henry” has a mere six photos of the two of you in it. That’s all we have and together they hardly add up to a book. I even threw in a few pictures of you playing baseball and other sports so Joe would know that the two of you have a lot in common.

To be honest, you don’t look so good in the pictures I managed to find because you were so sick when they were taken. The great things about the pictures of you playing sports is that you look like you — in other words, strong and handsome.

In the later, sicker photos, you were huge, blown up on steroids. I do have video that I took of you the day Joe was born, a day when you were stuck in Georgetown Hospital and Mom was over at Sibley Hospital, where she’d just had your baby brother. You gave a warm greeting to Joe and said “hi” to Mom. It’s a reminder to me of another bunch of videos, the ones I took right after you were born and were still in the NICU, and that I took down the hall to Mom because she wasn’t allowed out of bed and you weren’t able to leave the incubator. So I guess we were used to making do with pictures from the get-go.

I don’t know why I didn’t take more pictures during the year of you and Joe. Maybe it was because things were pretty crazy with a new baby and you in and out of the hospital. Maybe I was so confident you were going to get better that I didn’t think I would need to use photos as a way to help Joe know you.
I certainly take a lot of photos now, though. This fall, one of the parents at Joe’s baseball game asked me if photography was my hobby because I am armed with a still camera and a video camera at every game. The honest answer came tumbling out of my mouth. I told her that I take all these pictures because Joe had an older brother — you — who died, and I have a need to make sure I capture everything in Joe’s and Jack’s lives in case something ever happens to them.

I imagine that wasn’t the answer she was expecting.

I don’t just take photos of your brother, though; I take all the kids. And after each of the Joe’s games, or a school assembly, or anything, really, I immediately scan through all the shots and e-mail the best shots of other kids directly to their parents.

I am certain there are photos of you out there sitting on someone’s camera or computer. Maybe even photos of you and Joe.

Love,
Dad

Two more things I should mention:

First, Laurie and Allen have created the Hope for Henry Foundation in his memory, to bring gifts and parties and smiles to children who spend much too much time in the hospital. I am on their board of directors. You can learn more about their work here.

Second, today is Allen’s birthday, one week after the anniversary of Henry’s death.

First-ever Japan Wish flight takes off for Disneyland

Sunday 21st December, 06:27 AM JST

American Airlines and Make-A-Wish Japan, the local office of the Make-A-Wish Foundation International, on Saturday sent Omoi Sendai, a junior high school student from Toyama Prefecture, off to Los Angeles on the inaugural Japan Wish flight. Omoi, who is battling a complex medical condition called Fanconi anemia, has had a long-standing dream of going to Disneyland in Anaheim, California.

• only article
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Omoi Sendai, center, and his family stand before a cake prior to their departure from Narita airport on Saturday.

Masami Yagi, president of Make-A-Wish Japan, said at a send-off reception, “Granting this wish of Omoi’s to go to Disneyland with his family brings the total number of wishes we have been able to grant over the years to 1,290. We are so happy for Omoi and hope he has a wonderful time.”

Upon Omoi’s arrival at the Los Angeles International Airport, he and his family will be welcomed by volunteers from the Something mAAgic Foundation, a non-profit organization made up of current and former American Airlines employees that support the Make-A-Wish Foundation as it creates magical memories for children with life-threatening medical conditions.

Omoi’s dream will come true as he enjoys spending time at Disneyland with his family and a volunteer escort from Make-A-Wish Japan. Omoi will return to Japan on Christmas Day.

An annual event since 1996, WishFlight sends families of children with life-threatening medical conditions to Orlando each fall to experience a week of fun at Give Kids The World Village and area theme parks. Since 1996, 270 children have participated in WishFlights and more than $1,000,000 in cash and in-kind donations has been raised by Something mAAgic to send children from Canada, Mexico, Europe, Latin America and the United States to Walt Disney World.

This flight is the first-ever Japan Wish Flight, a similar collaboration by the organizations listed below to make one of the dreams of a Japanese child facing difficult medical challenges come true.

Hey, we bought our first Christmas tree ever. Actually, we didn't buy it, but we tried. There is a great story here.

On Sunday, Mom and your brothers and I went to a holiday party that Dr. Shad has invited us to attend for the past few years. We've never been around, but this year we were in town so we went.

The party was a fundraiser for Georgetown's pediatric oncology/hematology department. They had a silent auction and some of the items were these neat Christmas trees that local designers decorated. One of the trees was called the "Comic Book Christmas Tree." Mom and I agreed that Hope for Henry should buy it and donate it to the clinic. I mean, how perfect is that.

Even though it was a really cool, no-one other than us bid on the tree. And though we had to leave about 10 minutes before the auction was going to be over, we felt pretty confident that we would get it. We even put instructions on it that it should be delivered directly to Georgetown the next day.

All week we were waiting for someone to call us and ask us for a credit card to pay for the tree, but no-one rang. So today I called a contact I found on the website for the event and they explained that someone else bought the tree.

I said there must have been a mistake. They said, na-ah, someone else got it and already paid for it. Huh?

But then they looked a little closer and explained that the person who bought it, had bought it for Laurie, otherwise known as Mom.

A couple of years ago I nominated Mom to be a Washington Woman of the Year, and she won that honor with a few other women who do good things in the community. The person who introduced Mom at the awards luncheon was a woman named Tammy Darvish.

Tammy is a very successful businesswoman who does so many, many good things here in Washington. Mom really admires her.

So, can you guess who bought the tree for Mom so Hope for Henry could donate it to the Lombardi clinic?

How about that for a Christmas miracle.

Tonight Mom and I dropped off some Wii games at the clinic and decided to check out the tree.



There are ornaments made out of superhero comic books hung all over the tree. The tree isn't real so they can store it each year and pull it out at Christmastime.

When we got home I took a picture of Michael's and Bill's backyard. Michael has outdone himself this year.

Mom's not digging the "deathiversary" thing. She's right. I'm going to move to "anniversary of your death" for all future letters.

You know the Jews already have a word for it, Yarzheit.

Yours is coming up fast. It starts January 1. Happy New Year.

Deathiversary coincidences.

1. Mom's editor emailed her to see if she had revisions that Mom could send to her. Mom's editor hadn't spoken to Mom for weeks and didn't know it was the anniversary of your death. And she also didn't know that Mom set December 11 as her deadline (wonder where that word comes from) for getting all her writing done. Perfect.

2. Debbie Blum got contacted by the National Marrow Donor Program to let her know that she might be a match for someone needing a transplant. Debbie signed up for the registry when we were looking for donors for you.

We were leaving Joe's football practice today and his coach told us a story. He said that a friend was at Fedex field and this guy's son was thirsty so they looked for a water fountain. Unfortunately, Dan Snyder had them all removed so he can sell more bottled water.

See what I mean.

We just picked up Joe from a playdate. In the car he said that the babysitter - the other boy's nanny - had said something strange.

"What was that," we asked.

"She asked me how many brothers and sisters I have, and I said I have two brothers but one died.

She said, 'cool.'"

Mom asked Joe if that hurt his feelings. He said yes.

Jack then cautioned Joe that he didn't need to blurt out that his brother died. I understand what Jack is saying, but I told Joe that he should never feel uncomfortable telling people the truth.

You still command quite a crowd. Even in the rain and the cold. We will not be deterred. Check out all the rocks and stuff on your headstone. I am thinking very seriously about doing the custom "visitation stone" business. I have read that even non-Jews leave pebbles and stones too. Bigger market than I originally thought.

It was a lot like it was 6 years ago weather-wise. Appropriately miserable.



Mom and I both agree that the entry gate to the cemetery seems a bit "Holocausty."

When we were all standing there I created a new tradition right on the spot. I decided that we needed to share funny Henry memories. I asked Mom to tell the story that Liane remembered at their lunch last week. It was about the time when you took off your wet bathing suit and walked completely naked the block or two from their pool to their house. Bella and her sisters were pretty embarrassed, but to you it was completely natural and okay. You thought nothing of it. You were 4 years old.

I found this when I was researching the stone business. I gotta say I've never seen the tree stump thing anywhere. That's a little freaky. Of course all I can think of is how dogs would want to pee on it. That isn't a good image.

I walked home from work last night. It was unseasonably warm and I wanted some time alone to think about you. Today is your Deathiversary. How do you like that word. I've been calling it your Deathday forever, but I saw something on the Biography Channel the other day that talked about Johnny Cash's Deathiversary.

Deathiversary it is. That's got more poetry to it than Deathday, and it's more accurate. When you think about a birthday, it isn't the day you're born, it's the anniversary of your birthday.

I stayed up late watching a movie called Scottish Flyer. It was about a depressed guy who was a bicycle racing champion. I fell asleep on the couch watching it. The only problem with sleeping on the couch is I don't get to hear the rain hitting the skylight in our bathroom. And it has been raining. A lot.

Which brings us to today. I'll be the only one wearing boots to the cemetery. We are the family of inappropriate footwear. I will try to remember to bring rags to make sure your headstone and grandma's headstones are clean of goose poop.

Cold, wet and miserable is great for being sad, but not so great for visiting your grave. It is almost the exact weather conditions of the day you were buried. Just a few degrees warmer.

You know, year-after-year I struggle to find the right way to spend this day. I know that I want to focus on you with everything I have. But it never seems to never work out 'cause your brothers or something else from work or life demand attention. We honor your memory 364 days a year. Today is to think about you and cry.

I'm feeling kinda lucky today. Your brothers are in school. Mom is upstairs working on her book. Here I am sitting alone in the basement reading a story (the perfect story for today) in The New Yorker magazine, listening to sad songs, typing this stuff and looking at photos of you.

I am getting my sad on.

Mom just came down and asked if I want to be sitting in the dark. Of course I do. I know how to work a light switch. Wonder why she asked that question. Maybe she wanted to talk. I know that when I used to be really sad after you died it worried Mom. But not so much anymore, because I am not as sad as I used to be.

It is amazing how things work out. First thing I picked up this morning when I rolled out of bed was the New Yorker so I could finish an article. I finished it and just started flipping through the magazine and my eye caught an article which I started reading but had no idea it would be the perfect thing to get me focused on you.

The story is written by a dad about his daughter who literally dropped dead last December 8. His daughter was grown up, she was in her 30s, and she, her husband and children lived/live in Bethesda, where I grew up. You know how I am always looking for coincidences, but maybe connections is a better word now that I think of it.

It wasn't until the second paragraph that you learn about the woman dying.

This sort of activity has constituted our life since Amy died, last December 8th. The night of her death, Ginny and I drove from our home in Quoge, on the south shore of Long Island, to Betheda, Maryland, where Amy and her husband, Harris, lived. With Harris's encouragement, we have been there ever since. "How long are you staying? Jessie asked the next morning. "Forever," I said.

Yup, I started crying from that second paragraph on. I bet we heard about this woman's death last year. There has to be someone we know who knows the family. I am certain of that.

When she was six, I was driving her and three friends to a birthday party. One of the girls got carsick. The other two girls backed away, understandably, with cries of "Ooh! and Yuck!" Amy drew closer to the stricken child, to comfort her.

That's you. That is what I want Mom to bring out in her book.

Jessie's teacher occassionally invites me to visit her first-grade class. They ask about writing. But the first-graders seem to know at least as much as I do. Ms. Carone asks me how a character is developed. I bumble through an answer. She askes the children to write a story with a main character, then list his or her qualities -- loyal, jealous, brave, generous. Each child stands before the class to answer questions. Arthur writes about a superhero.

"Anything you'd like to ask Arthur?
Ms. Carone says to the others.

One girl asks, "Does your superhero tell the truth?"
Arthur thinks and says yes

"Always?" the girl asks.

The article has it all. Bethesda. December. Death of a Child. First-grade. Superheroes. Redskins. Coincidences. Connections. How did this happen?

In April, we celebrated Amy's birthday, too. When we blew out the candles, Harris asked Sammy what he thought Mommy would wish for. "To be alive," Sammy said.

You rode an elephant!

Look at what your friends have done. We, like their folks, are so proud of them.

-----Original Message-----
From: Joan Vander Walde
Sent: Thursday, December 04, 2008 12:45 AM
To: ''
Cc: Jonathan Cannon; Robin Shapiro
Subject: Your children's Tzedakah presentation

December 2, 2008
7 Kislev, 5769

Dear Ms. Greenfield, Mr. Mintz, Ms. Schwartz, Mr. Stanislawski, Ms Shoyer and Mr. Shoyer,

Yesterday it was my privilege to see and hear Jake, Eliana and Emily present the non-profit organization, Hope for Henry Foundation, to their classmates for consideration when distributing funds from the Class of 2013’s Bnai Mitzvah Tzedakah Collective.  I have been to many parlor meetings in which committed and articulate adults, professionals as well as volunteers, enlisted charitable support for their various causes, but all of those adults had much to learn from our JDS 8^th grade students yesterday. 

Emily’s, Eliana’s and Jake’s sincerity,  knowledge of the mission and efficacy of the foundation was clearly conveyed as they spoke to each granting group, repeating their presentation 5 times and becoming more persuasive and confident with each presentation. Their personal memories of and connections to Henry helped convey the convincing message of how important the contributions of this organization are to the well-being of hospitalized and seriously ill children.  Their presentation made a powerful impact on their fellow student philanthropists of the Class of 2013. 

In their granting groups, students moved from presenter to presenter hearing about 10 organizations in all and respectfully questioning each presenter.  When small granting groups met afterward to determine how to allocate the funds, students spoke about how impressed they were by the true understanding and commitment they sensed in each of their classmates’ presentations.  They reflected on how their own minds had been opened, and how important the work of each organization was.

We couldn’t be prouder, and we invite you to join us at school on December 19^th when Eliana, Jake and Emily will present their class’ donation to Hope for Henry Foundation.

Sincerely,

Joan Vander Walde
Director, Middle School
Charles E. Smith Jewish Day School

Mauri's daughter, Mireille, designed a Hope for Henry necklace. They came and sold it last night at the Hope for Henry Superhero Celebration in Bethesda. Hundreds of people showed up.

Mom presented cool lucite trophies to Jake, Ari, Simon, Natalie, Mireille and Emily for what they've done for Hope for Henry.

I gotta tell you that Ari and Simon made incredibly generous contributions to Hope for Henry from the money they got as Bar Mitzvah presents. I mean really, really generous. Mind-blowing generous.

They love you. I love them.

We went over to Georgetown this morning for a Hope for Henry holiday party. We did the usual thing where we had a fun bash downstairs for the kids from the outpatient clinic and then we traveled upstairs with goody bags and stuff to give to the kids too sick to come down.

As I've told you before, this isn't always the easiest thing for me. Aside from the pain of seeing kids who are hurting, I often drift back in my mind to when you were up on the floor so often. The strange thing is I started thinking about the bottom floor of Fairview Hospital in Minneapolis and its food court. Not Georgetown at all. Weird.



This time when I went up I was with a Toy Soldier and some people from the company that was sponsoring the party. They were all very nice. I don't know how seeing the sick kids affects other people. To ease my own discomfort and maybe make it easier on them, I told some funny - or at least they're funny now - stories as we waited for the elevators and went room to room. These folks were from a company that makes medicine and we were in a hospital so I stuck to that theme.

The first story I told was how right before Jack was born I took a pill that I didn't know I was allergic to. Mom gave birth to Jack and that same night I had a terrible and then scary reaction to the medicine. I asked the nurses at the hospital where we were if they'd take a look at me - but they said they couldn't because it was Columbia Women's and Children's hospital and I was neither. Huh?

So I left Mom and newborn Jack and walked across the street in the middle of the night to the emergency room at George Washington University Hospital (that's where you were born). It was a Saturday night and some students had been out drinking and fighting and now they were all waiting around - bloodied - waiting to be seen by the emergency room staff. I was behind them in line and my skin was getting worse, it was angry as we used to say, and my chest was feeling bad and my tongue was swelling.

I abandoned GWU and called cousin Ron, who himself works for a company that sells drugs, and he helped get me a prescription in the early hours of the morning for steroids which made the swelling and the rash go down. I spent the next day zonked out in Mom's hospital bed as she entertained all our friends who came to see your brand new little bro.

The other story was about when you were having a tough night post-transplant and your blood pressure was spiking. In the middle of the night after the alarm beeps and bells went off on your monitor, a nurse gave me a Vasotec pill. You weren't so keen to take it, but they said that I had to get you to swallow it.

We were both so tired and at some point while I was negotiating with you I dropped the pill on the floor. I picked it up real fast and finally got you to take it. After you swallowed it, I was certain that I had just killed you with some kind of bacteria or germ that attached itself to the pill during its nanosecond rest on the floor. We were so paranoid about infection - as we should have been. Fortunately, your blood pressure went down and you made it a bit longer.

Ba-da-dum. I got so many of these. Ugh.

When I got home, I found this email in my inbox.

From: mead
Date: Wed, 3 Dec 2008 11:24:20 -0800 (PST)
To:
Subject: Thank you

Allen:

I was in Georgetown Hospital with my daughter this morning. I asked you who Henry was and you replied that he was in the hospital "many years ago."

I was very moved by your presence and by the wonderful music of the gentleman who sang to my daughter.

My daughter was three months premature and weighed a pound at birth and has spent probably close to two years in the hospital since she was born. She's now 5. Today we were lucky. Only an overnight.

In any event, what I wanted to say to you is this: there is no such thing as "many years ago" when it comes to one's own child and his or her medical travails. I know y ou know this, but I wanted to acknowledge this to you.

Thank you for the wonderful work you are doing, and again, I was very moved by the presence of you and your team.

Best regards,

Mead

Part of my discomfort of being on the floor is explaining to another parent who you were. I am very conscious of not wanting to talk about death. I don't want to make it seem that their kid - who might even be staying in the same exact room you used to stay in - might end up like you. 

What is so strange about all this is if someone had said something to me when we were in the hospital about their kid dying, I would never make the connection to you. I'd think, "That's sad, terrible and unfortunate. But it isn't what is going to happen to my Henry."