Dear Henry

2010-03-12T12:10:00.001-05:00

Well this reduced me to tears just now. I read this to Mom on the phone and couldn't finish it.

The Shelsons are the silver lining to FA. The silver lining being the great people who we've met because of you, or who are part of this terrible fraternity.

I cannot be happier for Aaron and his family, but reading this allowed me to think the "what if" you had made it thoughts that I don't think about much any more. The part that killed me was the "walking through the New Hampshire woods, seen whales..." part. I have written to you how I wanted to celebrate you "making it" by walking all or part of the Appalachian Trail with you. Then there is the trip to go whale watching that we had to cancel because you got too sick to go. I actually made reservations for Mom, me, Jack and Joe to go whale watching this summer off Cape Cod. We are going to pick up Jack from camp (he is going for 2 months this summer!) in western Massachusetts and then we'll head east to Provincetown and go out on a boat.

----- Original Message -----
From: Lorne
To: fanconi(at)yahoogroups.com
Sent: Tuesday, March 09, 2010 8:11 PM
Subject: RE: [fanconi] success

Aaron celebrated his 7th rebirthday this past weekend having had an unrelated transplant in Minneapolis. He was discharged from the hospital on Day 20, readmitted briefly around day 25, discharged on day 28. Around day 100, we were headed home to Toronto.

Since transplant, he has visited Newfoundland, got a Dutch sheepdog (big mistake!), eaten caribou, flown to Iceland, walked through the New Hampshire woods, seen whales, met his donor, eaten blood pudding (if you don't know what it is, you don't want to), climbed a volcano, read all the Harry Potter books, played with a crab in a tidal pool in New Brunswick, ridden Splash Mountain (but didn't enjoy the fast part), hung out with Bill Cosby (they go way back), seen the original geyser (called Geysir), been up close and personal with a moose, had cataract surgery, gone swimming, seen Billy Elliot on Broadway, memorized all the songs in Sweeney Todd (the stage musical and the movie), started riding the subway home from school and much, much, much more.

Aaron is now a grade 11 high school student. He has been in several school drama productions and studies improv. at Second City's training centre here. He plans on becoming an actor. He will be a great one.

I consider that success.

Lorne

2010-02-28T23:02:00.000-05:00

I'm going through a lot of notes that I've written to you and I'm going to try and get it all online. Here is something I wrote

I was trying to mute how I was feeling by cranking up.

I am guessing that I was sad and the way I dealt with it was turning up the music - probably in the car - so loud that I couldn't think... or feel.

2010-02-27T16:44:00.000-05:00

This is the background on my login on the computer in the basement.

2010-01-02T11:39:00.001-05:00

Micah died. Everyone is pretty sad. The cemetery was covered in snow. I really don't like the word "predeceased." I remember Ethan's funeral. It is all so wrong. Beth will be okay - but not for a while.

Micah Naftalin, advocate for Soviet Jewry, 76

Micah H. Naftalin, a lifelong Washington, D.C., resident and a leading religious and human rights activist for the past 20 years, died at his home Dec. 23, following a long battle against end-stage renal disease that resulted in cardiac failure. He was 76.

Naftalin served since 1987 as the national director of the Union of Councils for Jews in the former Soviet Union (UCSJ), a human rights organization operating across the former Soviet Union.

At its height during the era of the Soviet Jewry movement in the 1980s, the Union of Councils and its more than 40 local councils in cities across the United States had a total membership in excess of 100,000.

Naftalin "played a very important role in advancing the cause [of Soviet Jewry]," said Mark Levin, executive director of the Washington office of NCSJ-Advocates on Behalf of Jews in Russia, Ukraine, the Baltic States and Eurasia.

Under Naftalin's planning and operational leadership, the monitoring by the Union of Councils became the principal source of primary data on religious discrimination and, especially, anti-Semitic and xenophobic hate crimes and propaganda across the former Soviet Union, with special emphasis on the Russian Federation, Ukraine and Belarus.

"I am deeply saddened by the loss of such a great human rights leader within the Jewish community," Larry Lerner, UCSJ's president said in a statement. "Micah was a friend and colleague whom I admired for many years. He will be greatly missed"

Naftalin was a graduate of Bethesda Chevy Chase High School and attended the University of Maryland for two years before earning a bachelor's degree in music from Brandeis University in 1955. From 1955 to 1957, he served in the U.S. Army, in Korea, as an enlisted man. He received a juris doctor degree from The George Washington School of Law in 1960.

"He was a lifelong Zionist, as were his parents," said Rabbi Emeritus A. Nathan Abramowitz of Tifereth Israel Congregation in the District, where Naftalin was an active member, having served on the board of directors and as vice president. "He was interested in Soviet Jewry because he was interested in all things Jewish and Israeli."

Before joining UCSJ, Naftalin was an aide to former Rep. Carl Elliott (D) of Alabama, with whom he advocated successfully on behalf of the National Defense Education Act supporting vocational education, and with whom he later practiced law. He served as chief counsel and deputy director of the U.S. House of Representives' Select Committee on Government Research and as a senior policy analyst with the National Academy of Sciences. In these roles, he was a prominent opinion leader in the emerging field of science and technology policy analysis.

Eager to serve the Jewish community professionally, according to Abramowitz, in 1982, Naftalin joined chair Elie Weisel on the U.S. Holocaust Memorial Council, where he was appointed deputy director and, later, acting director. He served on the council for five years, during which time the council selected a museum site and began its Campaign to Remember -- a title he suggested.

In pursuit of his passion for religious and human rights, Naftalin established close consultative relationships with the White House, Congress, the State Department and the media. He briefed them regularly on incidents, trends and policy issues related to the status of Jews, anti-Semitism, and the general human rights situation in the former Soviet Union.

He represented the Union of Councils at the Conference on Security and Cooperation in Europe, as well as at other international human rights conventions throughout Europe and North America. In 1990, in Moscow, Naftalin presided over the founding of the Russian-American Bureau of Human Rights, the first Western human rights organization ever registered in the Soviet Union. Since then, Naftalin managed the establishment of six additional human rights and rule of law monitoring bureaus in Tbilisi, Lviv, Minsk, Almaty, Bishkek and Riga.

In 1995, Naftalin represented the United States Government as an official public member of the U.S. delegation to the Conference on Security and Cooperation in Europe as well as at other international human rights conventions throughout Europe and North America.

"For 22 years, Micah devoted his creative and constructive energies to Soviet Jewry," said Abramowitz in remarks he prepared for Naftalin's funeral. But he also recalled other qualities that Naftalin's family members spoke of as he prepared the eulogy: his musicianship, his love of the Redskins and his strength and humor in the face of serious illness.

Recently, Naftalin was appointed vice president of Dialysis Patient Citizens, a nonprofit patient organization dedicated to improving dialysis patents' quality of life by developing awareness of dialysis issues, advocating for dialysis patients, improving the partnership between patients and caregivers and promoting favorable public policy.

He was a former president of the Chevy Chase Elementary School PTA.

Naftalin was predeceased by his son, Ethan, in 2004. He is survived by his wife of 50 years, Beth; his children, Marilyn Weaver and Suzanne Rand, both of Washington, D.C.; and his grandchildren, Noah Weaver, Sydney Weaver and Ellie Rand.

2010-01-01T16:33:00.000-05:00

It's New Years Day. We are in St. Michaels. Home.

Mom is on the phone with a reporter from a newspaper in Baltimore who is doing a story about Hope for Henry starting its program at Sinai Hospital. I just slipped her a note that said, "make sure to mention your book." And Mom whispered back that the reporter has already read it. I am glad there are people getting to know you who didn't know you.

Todd Snider, who I love and who is mentioned in Saving Henry, sings a song about his friend Eddy who died on New Years Day 10 years ago. I wonder how he does that night after night without crying. I love that he remembers him that way. John Prine, who I also love, sings a song in every concert called Souvenirs. He wrote that song with his really close friend Steve Goodman, who died of leukemia.

Souvenirs

© John Prine & Steve Goodman

All the snow has turned to water
Christmas days have come and gone
Broken toys and faded colors
Are all that's left to linger on
I hate graveyards and old pawn shops
For they always bring me tears
I can't forgive the way they rob me
Of my childhood souvenirs

Chorus:
Memories they can't be bought
They can't be won at carnivals for free
Well it took me years
To get those souvenirs
And I don't know how they slipped away from me

Broken hearts and dirty windows
Make life difficult to see
That's why last night and this mornin'
Always look the same to me

I hate reading old love letters
For they always bring me tears
I can't forgive the way they rob me
Of my sweetheart's souvenirs

I guess it is a bit like Alex Ovechkin kissing the sky after he scores each goal. Maybe this blog is my Souvenirs.

Saving Henry is Mom's. I don't how she is going to read from the book at book parties and readings and not cry.

2009-12-30T16:54:00.008-05:00

I read this today. It is almost New Years and this is as good a resolution as you can find.

"To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty, to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch, or a redeemed social condition; To know even one life has breathed easier because you have lived. This is to have succeeded."

Ralph Waldo Emerson

There is thing called Facebook and I find that a lot of the stuff I used to write to you I just put on Facebook. That bothers me a little bit. I find I write to you less and what I do write is the sad stuff not the happy updates about Mom, Jack and Joe.

Here is a quote I put on my Facebook page where they give you space to put your favorite quote.

"Outside of a dog, a book is man's best friend. Inside of a dog it's too dark to read."

Groucho Marx

2009-12-07T23:17:00.000-05:00

We had the annual Hope for Henry Superhero Celebration last night. It was a huge success. There were a lot of people and we raised a lot of money.

I saw something, though, that made me crazy sad. It was really fast. No-one else probably saw it and if they did it probably didn't register. Simon hugged Ari. That was it. It was so nice, so sweet and made me so sad. Jake was there too. All three of your buddies are still buddies.

2009-12-07T23:12:00.000-05:00

The bad week has started. But it didn't start all bad. I had to register your brother for soccer. And I was psyched to do so. Wanna know why? 'Cause you're still in the system.

2009-11-29T16:44:00.002-05:00

2009-11-21T10:30:00.004-05:00

2009-11-08T18:34:00.000-05:00

The night we left for Ohio to go to Sam's funeral Mom told me about a visit your brothers had with their doctor earlier in the day. It seems that Joe has an irregular heartbeat and his doctor wanted us to visit your cardiologist, Dr. Hougen. I thought we were done with him. I asked mom if she thought that he knew you were dead. He and Dr. Jonas did a great job patching you up for a long life.

While we know it won't be anything - right, it wasn't fun to revisit the wearing of the vest.

We remember when you had to do this. It recorded your heart beat for 24 hours or something like that. You had something, though.

What you didn't have was a 2009 Mark Teixeira World Series jersey. Your lucky little brother scored big when I had to travel to New York for work while the Yankees were in the World Series. My hotel was just around the corner from the Yankees store on Fifth Avenue so I popped over there and got him a jersey. I can't help myself from spoiling those two brothers of yours. Funny thing is when I was on the train up there the conductor went through the car asking if you were a Yankees or Phillies fan. They gave you a t-shirt depending on what team you were supporting.

2009-11-08T10:42:00.000-05:00

I think I've said this before to you that I sometimes wonder if your brothers are any relation to me. I come to this question by looking at the laundry. There are never any socks for Jack no matter what the weather. It could be 20 degrees below zero and the middle of winter and I won't be washing any socks because Jack is wearing flip flops.

The other thing that convinces me that your brothers spawned from aliens is that their pants - if you can call them that - are all 100% polyester. Wearing those would be like nails on a chalkboard for me. But when I try to introduce the idea of wearing jeans I am met with icy stares. How dare I suggest something so absurd.

But then looking at my own t-shirts I realized that maybe, just maybe they share my DNA

Capitals
Capitals
Nationals
Todd Snider
Rolling Stones

2009-11-08T10:06:00.004-05:00

I was folding the laundry this morning and realized that everything you need to know about your brothers you can learn by reading their t-shirts.

Jack:
Jimi Hendrix
AC/DC
Sex Pistols

Joe:
Arenas
Zimmerman
Home Run Baseball
Stoddert Soccer
Ovechkin
Semin
Capitals

Wonder what yours would have said.

2009-11-04T23:36:00.000-05:00

Jack, Mom and I met for the first time with the rabbi to discuss Jack's bar mitzvah. Jack's portion is the story of Joseph and his dreams. We talked about what Jack might talk about at the service. We spent a lot of time going over what happened when Joseph decided to teach his brothers a lesson by threatening to make Benjamin a slave for stealing. I started thinking about Jacob thinking he's lost two sons. I thought about Abraham thinking he was going to lose Isaac. And I thought about you. I said to the rabbi that I thought that these tests were overly harsh. He said that it is an important part of Judaism to teach that life is hard. It was all too much for me. I was getting very emotional and very sad. I was pretty tired because Mom and I had flown in really early in the morning from Los Angeles. I said that maybe Jack could focus on the dream part instead and then I just shut up and let everyone else talk and work through these things.

2009-10-26T21:58:00.002-04:00

This was yesterday. Happy 14th Birthday. I said to Mom that you've been dead as long as you were alive, but she said that doesn't really kick in until the anniversary of your death in December.

I took some balloons from Emma's Bat Mitzvah and kept them for our visit out to your grave. If the weather had been cooler I think they would have stayed more blown up. I was really psyched that the pinwheel is still in place. I brought the extra one with us in case I had to replace it, but no worries. The cape we put up in the tree is still there. I am glad they don't take too good care of your plot.

I cleaned your headstone and the bench. I brought supplies with me - Formula 409. I also cleaned off Grandma Phyllis' grave. There is a song I saw last week on iTunes when I was listening to Bob Dylan that was originally done by Blind Lemon Jefferson, See That My Grave is Kept Clean. I was looking for this other song, The Groom Left Standing at the Altar. That song played after a Todd Snider concert that Mom, me, Aunt Tracey and Uncle Andrew went to last week the night after we got back from Samantha McCarthy's funeral.

It was so peaceful at your clean grave that both Mom and me fell asleep while we sat there. I kept reading your name over and over and over again and then closed my eyes. Either it was peaceful or we're bushed. No-one ever told me how tired you get from feeling a lot. I think it must be called emotional exhaustion. It's real.

Hey, you know how I am into coincidences, right. Well check this out. I had told you last year around this time - when I wrote to you about Ari's Bar Mitzvah - that he spoke and it made me think of a poem.

Do Not Stand At My Grave and Weep

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

Mary Frye, 1904-2004

Guess where I saw that poem. Right at the entrance to the cemetery. It was on a bronze plaque. I never saw it before but I spotted it on the way in yesterday. I took a picture of it.

Samantha McCarthy's mom wrote something the other day that also reminded me of the poem. I like that she writes +6. That is both incredibly hard and positive.

Wednesday, October 21, 2009 11:47 PM, EDT

Day +6

The last five days have been a complete whirlwind. We are finally at the lakehouse after five long and busy days. We were surrounded by family and friends since we arrived home on Thursday night and have had a constant stream of visitors delivering food and cleaning up and Dan and I decided last week that we would just lean in and let it happen. It proved to be the best way to deal with everything. We have the most wonderful friends and have been well taken care of.

Friday morning Dan and I woke up at 6:00am and left quietly to have breakfast before anyone woke up. Later that morning we went to the funeral home and worked out all the details. Right away we started to write Sam’s obituary. I knew why we were there but I wasn’t quite ready to start with THAT. Once we got through that we chose a casket. Not another good choice but had to be done. We chose a green casket, Sam’s favorite color. From there we decided to just dig in and go right to the cemetery. Talk about a surreal experience. It was kind of a gray and gloomy day and we drove around searching for the perfect spot. Fortunately there are not many spots for three so there weren’t many choices. We bought space for the three of us and I left there with a strange sense of calm knowing that Sam would feel safer knowing she was not alone and we would join her in time. The location is in the back part of the cemetery and is on the inside of a beautiful hedge row and is very quaint. We left there and went to visit the florist. We chose all pink flowers to go with the green casket. My plan was to make Sam feel right at home. Her bed is green and her room is painted pink and I hoped she would approve. Saturday we did lots of errands and had more visits from friends and family and Sunday we met with Fr. Kavanaugh to plan the funeral mass. We spent most of the time telling him a lot about Sam since he arrived just before we left OLP and he never really got the opportunity to meet her other than in the hospital over the last two months.

Monday morning Dan and I took a drive to the lakehouse to meet some movers that we had already scheduled. The drive was very relaxing and a good way for the two of us to prepare before the craziness of what we were about to do. Dan, they boys and I arrived at the funeral home about an hour prior to the start of the visitation and were pleasantly surprised at how beautiful everything had turned out. So much for, “in lieu of flowers”! The room was full of roses and lilies and I will always have that in my mind when I smell that beautiful scent. It was a beautiful sight in spite of the sadness it held. I know Sam was very happy with the pink and green. We decided to leave the casket open and Sam wore her favorite hat, Kermit t-shirt and green sweatsuit. The boys thought she looked like she was smiling and that made me happy and confident we had made the right choice. Finn and Jack left with friends for most of the evening but Joe wanted to stay and spent the evening hanging with us and the guests. There was a steady stream of visitors from beginning to end. We saw many people we expected and many we hadn’t seen in years. We closed the evening with a lovely prayer service and Jack did his best to make the mood as bearable as could be as he participated in the service repeating all the responses after everyone else!

We left the funeral home after saying our last goodbyes. On our way home we tried to tell the boys how we were coping with the loss of Sam and our ability to “see” Sam in different places when Finn says, “hey, there’s Sam’s Auto Body Shop!” Just like that she was right there in the car with us. Ever since then we have seen Sam everywhere wether its a shooting star, a ladybug, a rainbow in a cloud, a warm breeze on your face or just a song on the radio. She is with us everywhere we go.

Tuesday morning we were up bright and early with the blessing of yet another gorgeous day, Thank you Sam! We arrived at the church and just about 9:56 we gathered at the entrance to the church. As they pulled the casket from the back of the car I fell apart. I thought I was ready until that moment. No parent should ever have to see that. Major tears. We covered the casket with the white cloth and proceeded down the aisle to our pew in front. The service was perfect, the boys, the music, the readings, everything was perfect. The 23rd Psalm has always been a source of comfort for Sam and Fr. K focused on that throughout his homily. He explained that Sam’s faith was strengthened as her body abandoned her and he challenged each of us to strengthen our faith by abandoning something in our lives even for just a week as a way to honor Sam. More tears (MT). We finished the mass with our friend Dave reading a letter that we received from another friend that was just what we think everyone has been trying to say since Sam’s death. I will share that letter with you when I get home tomorrow but I forgot to bring it with me. MT

The night before at the funeral home our friends filled out cards with a message to Sam. Our friends at OLP attached all the cards to pink and green balloons and white for the family. After the mass everyone gathered quietly outside to the sound of the bells as they put Sam back in her car. Once we were ready the boys started the release and let go of their white balloons. There was a brief moment where a bunch of five balloons all together got caught in a tree. Just when we started to worry a gentle breeze lifted the balloons and they floated up into the sky. I think Joe said it best when he said they looked like “floating lollipops”. It truly was a beautiful sight. More tears. I will post pictures as soon as I get them. I hope I never lose that memory. Sam was certainly smiling. As we drove out of the driveway the sixth grade class released yet another set of balloons as Sam rode past. More tears than I thought I ever had.

I am going to apologize now for making everyone wait for Dan and I to make a pit stop just before the start of the graveside service but we “really had to go!” I am sure we weren’t the only ones!! Just like the smell of the flowers the crunching of the leaves will always bring me back to the walk from the car to that blue tent. It felt like it was all I could hear as we walked over to pay our last respects before leaving Sam for the last time this week. Again, Jack brought laughter amidst the tears when we asked him to say goodbye to Sam. He looked down under the casket to the empty space and shouted, “she’s not in there!!” No, she is NOT in there. Her body may be in there but the important part, her spirit, is with us in our hearts and she is with Jesus safe and sound.

Of course the event turned into a party as we celebrated all that Sam did in her short life. We had everyone at our house and the party went late into the night. That might be why I am a little sluggish today or the fact that once I woke up at 5:30 and couldn’t go back to sleep. Whatever it is I miss Sam terribly. There is a giant hole wherever we go. I feel a little guilty for being able to do things we couldn’t before and I am sad that we don’t have her with us. Either way we are sad and I don’t see any end in sight. I am sure we have to keep going and I am going to do that but its really hard. In spite of it all we have had some laughs today... Joe annoying Finn and “running from the law”... just to name a couple!! (We weren’t really running from the law)

For now we are focusing on being together and as before we move forward into unchartered territory. The boys seem to be coping fairly well but its been barely a week. I am going to wrap this up. I have a lot to say that I have already learned from Sam but looking back this is already really long. Bear with me, this is my only way of keeping a record of everything and its something I need to do for us and the boys. I will share more later but for now I am off to bed.

All our love,

Nik Dan Finn Joe and Jack

There was a story in the newspaper yesterday about Sam and her parents and her brothers. I sent Sam's mom and dad some books that I read after you died. If they feel like it they can read them. Maybe they won't want to. Everyone does this thing their own way. There's no real guidebook. You gotta figure it out for yourself.

A young girl's death helps the living puncture stereotypes

Sunday, October 25, 2009 3:37 AM
By Joe Hallett

So beautiful, so peaceful in her casket, Samantha McCarthy breathed hope into the funeral parlor without breathing and spoke optimistically without speaking.

She had, through the words of her mother, Nikki, come to life while dying, instructing thousands how to be courageous while facing the unbearable -- death at age 11.

Although I have known Samantha's father, Dan McCarthy, for years, I was not aware his daughter was dying until several months ago. He never mentioned it in brief conversations during our chance meetings, never giving cause to perceive him as anyone but Dan the lobbyist.

Sifting through the sadness as I knelt beside Samantha's casket Monday night, I understood the falseness of such superficial relationships.

For years, Dan McCarthy has been the very likable president of The Success Group, a Statehouse lobbying firm with about 35 blue-chip clients.

Lobbyists are easy to dehumanize as behind-the-scenes dealmakers who have no scruples or consciences. That stereotype, of course, is false. The vast majority of Capitol Square lobbyists are honorable and necessary.

McCarthy is among the best of them. But he is more than that. Being a good lobbyist is what he does. Being a good husband and father is who he is.

That came through profoundly in "Samantha McCarthy's Journal," an online chronicle of Samantha's journey written with touching candor by McCarthy's wife, Nikki. ( www.caringbridge.org/visit/samanthamccarthy/journal).

She started it on Nov. 15, 2005, about a year after Samantha, then 6, was diagnosed with Fanconi anemia, an extremely rare blood defect that leads to bone-marrow failure. Bone-marrow transplantation is the only long-term cure for the disease.

Besieged with inquiries from family members and friends about Samantha's condition, Nikki decided to write the journal to keep everyone apprised. It turned out to be cathartic. "When she feels good, I feel good," Nikki wrote in her first entry. The journal had recorded nearly 63,000 visitors when Samantha died on Oct. 15.

Over four years, Nikki's journal portrayed the emotional highs and lows for a family -- Samantha left behind brothers Finn, 9; Joe, 6; and Jack, 2 -- trying desperately to hang on to their precious daughter and sister after a bone-marrow transplant had failed.

"She looked like an angel," Nikki wrote May 19, 2006, feeling "blessed" that Samantha was well enough to celebrate First Communion with her class. Many of Nikki's postings discussed Samantha's erratic hemoglobin counts, her stays in children's hospitals in Cincinnati and Columbus, and the ups and downs of a little girl wanting nothing more than to play with her friends.

On Oct. 11, Nikki's posting about Samantha was ominous: "She is losing her fighting spirit big time. I can't really say I blame her. We've asked so much of her over the last 400+ days. We've asked her to do more than most people in an entire lifetime and she is tired. She is sick and tired."

Four days later, Nikki wrote: "If you have ever gotten a shot or an IV stick, you know the question the nurse always asks: 'Should I count, or should I just do it?'

"Sam's answer was always, 'Just do it.'

"She never wanted a warning, just do it was how she preferred the pain. So it is with great sadness but some relief that I can just do it and say: Sam died tonight.

"We were not ready."

Before Samantha died, her brothers came to the hospital room for a final visit.

"We know she knew they were here when she responded to their kisses on the cheek," Nikki wrote.

At the funeral home, Samantha lay serenely, attended by the hope and optimism that other children with Fanconi anemia will benefit from all that was learned during her courageous fight.

In one of those awkward moments when you never know the right thing to say beyond "I'm sorry," Dan smiled understandingly, nodded toward one of his sons and said to me, "We still have the boys."

A lobbyist is not just a lobbyist.

Death has a way of clarifying the living.

Joe Hallett is senior editor at The Dispatch.

jhallett@dispatch.com

After we visited the cemetery we drove back to town and went out for dinner at your favorite restaurant, Cactus Cantina, with your favorite people, Ari, Jake and Simon.

I still can't imagine what the 14 year old Henry would look like.

2009-10-25T10:18:00.004-04:00

Here are photos of you and Emma. I cannot imagine what you'd look like now. Looking at these I clearly see how Emma became the Emma that I know now. She is a "singular talent." I know no-one like her. She has a maturity, focus and creative expression that I just don't see in other kids her age. She and Jack are incredibly close.

I will ask Uncle Andrew for a copy of what she said. She talked about you a little bit too. I cannot tell you how impressed I was with her yesterday.

Speaking of incredibly close, look at the smiles and hugs you both shared.

I've noticed that no-one uses any of the Henry swollen on steroids photos in their Bar Mitzvah photo slideshows. I may have to reverse that. I don't like thinking that your life stopped 2 years before it actually did.

2009-10-25T10:12:00.001-04:00

Here are photos I took at Emma's Bat Mitzvah. They start with shabbat dinner and Nana's and go through the service, the lunch and the party last night.

There is one more family gathering in a half-hour but Mom and I bagged. Your brothers are going with Nana and Papa Sy over to Aunt Tracey and Uncle Andrew's for the brunch. Mom and I are going to hang out and go to the cemetery.

I gave Jack your knife this morning. I crawled up onto his bunk, woke him up and gave it to him. I said to not hurt himself and to remember you. I told Mom I had done it and she was disappointed I hadn't waited to do it together with her. I think I really screwed up. I was trying to keep it low-key and not make it too ceremonious - probably 'cause I was worried about Jack's reaction. I didn't know if it would make him sad (that's why I did it in his bed, I figured he could roll over and go back to sleep) or it wouldn't produce any reaction. It was more like that, he said thanks and that was it. He ended up coming downstairs about ten minutes later. No knife in hand.

If it had been me, I would have spent the next few hours checking it out, trying to carve something, throwing it into the dirt to see if I could make it land straight - but this one is actually too big to do any good throwing really.

But Jack is Jack and away it went somewhere in his room. He has his way of doing things and they continue to be a marvel and a mystery to me. I love that about him.

2009-10-24T09:17:00.000-04:00

Emma's Bat Mitzvah "weekend" started last night with dinner at Nana and Papa Sy's. It was interesting because Nana and Emma's other grandparents talked a lot about how great it is to have lived to see their granddaughter bat mitzvah'ed. I kinda thought that was a given, and then thought about Grandma Phyllis and how she didn't live to see Hannah and now Jack become B'nai Mitzvah. At least she didn't live to see you die.

I am the official photographer as requested by Uncle Andrew. Here are some shots from last night. After looking at these I remembered that I wanted to buy a new flash and a wide angle lens for just this occasion. Oops.

2009-10-23T15:26:00.001-04:00

Mom called me earlier. I asked where she was and she said Saks. One day I should tell you the story about how - when I was a little kid - I was at Saks with Grandma Phyllis, Papa Teddy and Aunt Jen and these guys stole a bunch of fur coats and ran right past us through the parking lot. That was cool. Okay, so Mom was at Saks waiting for Aunt Abby. I had forgotten that on your birthday Mom gets a present from Aunt Abby. A pair of shoes. It might be because Mom came out of her shoes and walked through the freezing cold mud at the cemetery after your funeral. Or maybe it is because just for a moment when Mom puts on the new shoes she forgets how incredibly sad she is.

Jack is another person getting a gift for your birthday. I am giving him your swiss army knife. You probably don't remember this - on account of you were comatose - but I bought you a huge swiss army knife right before you died. This is what I wrote in the blog back then. I notice that I was writing about you and not to you like I started right after you died.

i went with my dad and jack to get jack some big boy clothes for the funeral. i also bought henry the biggest swiss army knife they make. he always wanted one but laurie knew he was still too young. he doesn't have much of a palm but i put his fingers around it and he is holding it now. also, it is pretty ironic that we took jack to get something to wear when he couldn't care less. henry was the real clotheshorse in the family. he had style.

the clerk at the store asked if we were out having a shopping day. i wish i had the wherewithal to say, "no, we're removing life support from my son today."

we're working on funeral and burial arrangements now. i ran into the manager of the ronald mcdonald house earlier i found that i had to actually say, "my son is going to die today and we are going to be out of here by tomorrow morning.

posted by Allen Goldberg at 10:40 AM

Originally I wanted to give Jack the knife - hey, that sounds just like Mack the Knife which is a great song - when he turned 11 or something. The only problem is I kept thinking he'd hurt himself with it. I think he is definitely old enough now.

I was in Switzerland 3 weeks ago and found a really nice swiss army case for the swiss army knife. Every boy should have a knife. I hope Jack likes it - how could he not - and that he doesn't get too sad. I didn't want to give it to him on his birthday 'cause I didn't want to risk getting him sad right around his Bar Mitzvah.

We (me, Jack and Mom) are going to talk to the Rabbi next week about the best way to "include" you in the Bar Mitzvah. We don't want to get people too sad, especially me, or take away from Jack's moment. I am sure there is a good way to do it. I am working on a video for the party and will include some footage and photos of the two of you. I have so much. I also plan to do a book for Jack with photos of the two of you together.

It is Emma's Bat Mitzvah this weekend. That's gonna be a little tough perhaps too. Mom and I are skipping out on the family brunch on Sunday so we can go spend some time at the cemetery.

2009-10-23T14:13:00.001-04:00

I am still reeling from Samantha McCarthy's funeral on Tuesday. Mom and I drove to Columbus after work on Monday and got there at two o'clock in the morning. We went to the funeral when we got up and then visited with Nikki and Dan at their home with their family and friends. We got back to DC late Tuesday night. I have a lot to say about that and will this weekend. You could say I have been saving up. What better time to spill it all than your birthday on Sunday.

Here is something I read today which made me feel regret that I didn't think to do this when you died. But who's thinking at that point.

Her mom just asked us to cut some of her hair,” I said. My voice sounded ripped apart, like a shirt collar that has been torn right before a funeral, as a traditional sign of mourning.

Carefully lifting the sheet, Ann cut off some of Tal’s long, earthy-blond curls.

“Is that enough?” I asked.

“It will never be enough,” Ann whispered.

All I have are those teeth of yours that got pulled during one operation or another. Hair would be so much better than teeth which are floating around in some solution in a specimen jar. I know Mom has some of your hair from your first haircut.

2009-09-09T22:32:00.002-04:00

I was thinking about you on my way home from work today. I drive 45 minutes through beautiful rolling hills in Virginia. I never had a commute in my life and now I drive 50 miles a day. While I watch the beautiful horses run through pasture, I listen to books on my iPod. Today I was listening to a book about Abraham Lincoln called Team of Rivals. The book is by a woman named Doris Kearns Goodwin. What I liked about what I listened to tonight was her description of one of the men who was trying to be President at the same time as Lincoln. When she talked about this man's family she included his son who died when he was 4 months old. That kid was not forgotten or overlooked. Nice.

Mom and I went to see a TV show be taped near our house last week. Doris Kearns Goodwin was there. She and the other people on the show talked about Senator Ted Kennedy who just died.

I reminded Mom how we went bowling one afternoon and Senator Kennedy was in the lane next to us with his family. I wonder if you and Jack were with us. It was a long time ago.

p.s. I talked to Uncle Stinky (Bill) who said it was him and me bowling with the Kennedy's.

2009-09-09T21:39:00.000-04:00

I haven't really written to you since I started my new job. Everyone who works there got an email today about the company picnic. It is at Turkey Run. The last (and only) time I was there was with you and Jack. You were the stars of the VarsityBooks.com picnic. I got sad when I read the email.

It is scheduled for September 26. Joe and I are going to a convention for Washington Caps fans that morning and then we'll come grab Mom and Jack and head over.

2009-08-03T11:39:00.000-04:00

I just realized that Jack's Bar Mitzvah is on the last night of Hannukah. I knew that it was during Hannukah, just not that it was the last night.

2009-07-28T09:16:00.003-04:00

I've written to you over the months about Dylan Moore. He died yesterday in a familiar place. How hard must it have been to type those three words, "Dylan is gone."

I don't remember the Meditation Place on the 7th Floor at Fairview. Maybe it's new. I once went into a chapel in one of the hospitals where we stayed, but just to check out what it looked like inside.

Dylan was from Roanoke, North Carolina. He was 8 years old, just a little older than you. I love the photo of him in the cowboy hat that is on the website and in all the news stories about him. He looks like he can rope a calf and do cowboy things. He must have been into cowboys the way you loved Batman.

I am sure that Hope for Henry gave him a gift at some point. I'll check with Mom and see what he got. I hope it gave him some happiness.

I know that Dylan's parents have a strong belief in God and that will help them through this.

You know, so often when I write to you about something terrible like this I am on the verge of saying, "I can't imagine...."

2009-07-26T19:50:00.000-04:00

Yesterday we were in the car heading to the pool when Joe said that he wished you were around so he could do sports with you. He says that a lot. Mom suggested he talk to Jake, Ari or Simon to learn more about you. I piped in and suggested that Joe could always ask Jack.

Then Joe said that he can ask himself about you. He said he knows a lot about you, like you were bald. I laughed hard at that. Mom explained that you were only bald for a few months from the medicine.

I know that he'll be able to one day read Mom's book and all of this and get a good sense of who you were. You guys would have really liked each other.

2009-07-17T09:23:00.001-04:00

Mom went up to get Jack at camp, so it is just me and Joe. When I got home from work last night he wanted to play charades. I can't remember his first turn, but it was a movie and three words in the title and I just couldn't figure it out. It kept looking like he was flying, but that wasn't in the title.

Then I went. Even with my great acting and mime skills, I couldn't give him good enough clues to guess my movie, Monster Versus Aliens.

When it was his turn, he went with a book with two words in the title. I was a little suprised by this, 'cause we usually stick to movies. I figured a book would be easy since one of the words in the title had to be "baseball" or "hockey."

His first clue made had me guessing, "sick," and "dying." He was dragging himself across the living room clutching his chest and then falling to the ground. We decided to skip straight to the second word in the book's title. Joe made muscles and swung an imaginary baseball bat. I guessed "Babe Ruth" even though that is two words.

Then Joe found a book or magazine on the coffee table and put his fingers over some of the printed words on the cover, so that the only word showing was "children." So then I started to try and guess books with a title "____________ Children."

Joe said, "no, no, no." Then he ran into the dining room and picked up one of the copies of Mom's manuscript and pointed to the title.

Saving Henry

I told him that it was hard for me to figure out "Saving" when the clues he'd given me for the first word had to do with "sick" and "dying."

I did like the "Henry" clue, though. Don't know how I missed that.

2009-07-17T09:06:00.000-04:00

You were in my dream last night. You were in the hospital. You looked gaunt and post-transplant. I was in scrubs. There was a doctor with me. You were big but it was almost like you were in an incubator - the ones they have for preemies. You were curled up. We were testing your breathing - and you were passing the test.

I think part of it was because I heard about 2 minutes of an interview with J.K. Rowling last night on TV. She is the woman who wrote Harry Potter. If I heard her right (and I may not have), she was talking about her fears of when her daughter was born. She had that normal parental worry that made her check to make sure her daughter was breathing when she was sleeping. That was part of the inspiration for the dementors. You remember them from the Harry Potter books - they suck the life right out of someone.

I think watching you do the pulmonary function tests in Minnesota (I don't think Mom was with us) played a part in the dream too. Mom went up to pick up Jack this weekend so I was sleeping alone. I think that contributed to the dream as well. I should have had Joe sleep with me.

Twice in just a few weeks. I am glad you're showing up in my dreams. I'd prefer the healthy Henry, but I will totally take - and am happy with - whatever I can get.

2009-07-16T13:43:00.001-04:00

Hey, check this out - http://www.dearhenrymusic.com/. I bet they were bummed that DearHenry.org was taken. Oh well.

I'm gonna email them and see if they sell any merch. That's the groovy way of saying merchandise. I'd go for a bumper sticker or t-shirt. A good thing it is the kind of music I like or it would be a bummer. They play a bluegrassy cover of Sweet Child of Mine. I've talked about that song to you in the past.

The funny thing is that I almost hosted a show on XM featuring their kind of music. It would have been cool to play them on the radio.

2009-07-13T21:07:00.006-04:00

This is from a post I wrote a long time ago that I never published. I updated it a little tonight.

Speaking of divorce...

I just finished a book by a writer named Hayden Childs, who wrote about a favorite sad album of mine. Both the album and the book are called, “Shoot Out the Lights.”

The album was written and performed during a really difficult period for this musician, Richard Thompson, who was going through a divorce from his wife, Linda, who sings on the album.

When I read the dedication at the beginning of the book I perked up when I saw Hayden Childs thanking his "little nephew, Henry." But it was the sentence that followed that I read a couple times over.

"I dedicate this book to the memory of my baby brother Michael."

From what I found on the Internet, Hayden Child's brother Michael died in October last year - a few days before your birthday - in his early twenties. He was "profoundly retarded" and blind and a source of joy to his brother and his parents.

I often wonder how your brothers might choose to honor your memory, if at all, when they get older. Will ESPN do a profile on Joe – with video footage supplied by me of his early years on the diamonds of Northwest DC - as he prepares to capture his first American League MVP trophy, and talk about the fact that he wears your initials, HSG, sewn into his uniform (against league regulations).

I don't know if I've told you what a crazy hockey fan your little brother has become. He LOVES the Washington Capitals. There is one incredible player on the Caps, Alexander Ovechkin, who Joe (and everyone else in Washington) really loves. Ovechkin wears the number 8, which I know was your favorite number 'cause of Cal Ripken.

Well Alex Ovechkin lost his big brother Sergei when Alex was only 10 years old. Whenever Ovechkin scores a goal - and that's a lot since he is the NHL leader in goal scoring - he kisses his fingers and points them to the sky to let his brother know he is thinking of him, and scoring for him.

Joe understands and appreciates what Ovechkin is doing. Joe is so passionate about the Caps that he dislikes any team that has the temerity (I'll explain that word later - I just saw a cool site called Wordnik which gives good definitions and other stuff) to beat them. Here is some of his artwork inspired by the Pittsburgh Penguins beating the Caps in the Stanley Cup playoffs.

There is a player on the Penguins whose name is Sidney Crosby. His nickname is "Sid the Kid." You'll notice your creative brother Joe figured out a good way to heckle Crosby - even though Joe's spelling differs from mine a bit, one poster reads, "Sid the Kid Sucks a Pacifier."

And maybe Jack name a character Henry in the hit sitcom he writes, directs and stars in. Perhaps, he’ll mention you when he picks up his Emmy. Lately, he says that he'd like to be a doctor and I don't doubt he could do it if he chooses that path. I hope it doesn't take that long, but he could end up curing Fanconi anemia. Wouldn't that would be a sweet way to honor his big brother and your memory.

But as we always say, it is up to them. They should just do whatever feels right, and it might just be looking at old pictures and thinking about you.

2009-07-13T20:49:00.002-04:00

Thank you for this morning.

I woke up at 6:15 am, which is a little too early to wake up on a Saturday morning. I looked over at Mom, who was snoozing away, and I was determined to get some more sleep. I've been really tired lately. I started a new job - which I know I haven't mentioned, but I will - and I have been getting up a little past 5 a.m. I could sleep to 6 a.m. and be okay, but I am waking up early without an alarm because I want to get to work on time (the job is way out in Virginia) and because I am thinking about this new job and what I need to do.

Well this morning I decided I should catch up on the sleep I've been missing. So when I went back to sleep I had a dream and you were in it. That's why I said thanks. Thanks for spending time with me today. In the dream, you were post-transplant and sick, but you were okay at that moment. We weren't dealing with all your medical stuff. I don't remember many of the details, but one strange thing sticks out. We were driving in the car and you handed up to me from the back seat a huge clump, almost a round ball, of your hair. But you had hair - it had grown out - and this was just some extra that was in the back of your head. Not sure what that means.

I woke up at 7:15 am, an hour later. It was great to see you again. I haven't dreamt about you in forever. I bet I could look it up on here.

We are in St. Michaels for Nana and Papa's 50th wedding anniversary. I drove in by myself last night because Mom and Joe went earlier with Andrew, Tracey, Emma and Sam. For some reason I had the best drive. I was listening to Todd Snider, remember the Beer Run guy. I did something I don't normally do and that is play the same songs over and over. Joe used to do that a lot driving me a little crazy, but now that he is getting older he is expanding his repertoire. One of the songs is called Money, Compliments, Publicity.

Money, Compliments, Publicity (Song Number Ten)
From The Excitement Plan
A man once said that the pinnacle of success
Was when you finally lost interest
In money, compliments, and publicity
A noble enough idea I suppose
How on earth he does this heaven only knows
I know I need a lot more of all three of those
Before I'll ever have the nerve to turn up my nose
At any money, or compliments, or publicity

I'm broke as the ten commandments
Sometimes I'm harder to follow
I don't know whether to walk to school or take my lunch
____ wearing my watch, it's true
You may think you see a man who was looking for attention
But you're looking at a man who has lived through a little bit of
Poverty, some anxiety, some scrutiny

If I ever do get my money together
I'm gonna take care of all of my friends
I'll buy an island run a phone line
Call them tell them all to get fucked...oh
That oughta take care of them
Just be me and my money and my compliments and my publicity
Sing with me
Money and compliments and publicity

It's an issue for me
I went to see this therapist
She said just do the best you can do
Do the best you can do
I was hoping for something more specific

A man once said that the pinnacle of success
Was when you finally lost interest
In money, compliments, and publicity
Many years later
Another man will say all that again
But not for the sake of inspring men
But rather cause he's got nine songs and knows he needs at least ten
Before he can go back to town and turn them all in
And get the money, the compliments, the publicity
Money, compliments, and publicity
Money, compliments, and publicity...

Nana and Papa's anniversary is a big accomplishment. It is amazing that people can be together for that long. The ceo at my new job suggested that I walk around and introduce myself to people so I can learn about them and what they can tell me about the company. When I walk to their offices and I see photos of just kids and no husband or wife I get pretty sad. I end up thinking about how hard their lives have been and how hard they must be now.

Death is bad enough; we are truly fortunate not to know divorce in our family. Maybe it's all the hugging and mugging.

2009-07-13T20:45:00.000-04:00

I love it when you get mail. I guess no-one informed Mickey.

For me, that's okay. I like it when someone thinks you're alive.

2009-07-07T16:21:00.000-04:00

Yesterday was the anniversary of your transplant, otherwise known as your new birthday if things had turned out okay. We used to celebrate with a party and a cake. We were right to be hopeful.

I guess it was appropriate that we had a guest over for dinner last night, Jacob Grossman's mom, Rachel. Jacob has FA. He and his family live in Chicago. His mom is visiting Washington with Jacob's sister Talia. Jacob has had a really tough go of it. I think his mom told us last night that he is the only kid to have had both a bone marrow transplant and a kidney transplant. He must have 3 different birthdays then.

We gave Jacob an iPod iTouch from Hope for Henry. He is an interesting kid. He loves Barry Manilow's music. I can't think of a whole lot of 10 year olds who even know who Barry Manilow is. It was weird to read in the newspaper this morning that Barry Manilow is in Washington, DC right now.

We told Rachel that she is in Mom's book. Mom tells the story about how you got on the phone with Rachel and advised that they get a "Magic Closet" for Jacob's transplant room at Minnesota. Rachel had called looking for advice, pointers, support, whatever prior to their family going to Minneapolis for Jacob's BMT, and you insisted on talking to her when Mom was done.

Rachel told us last night that they indeed had gotten a room with a built in Magic Closet, and it constantly produced gifts for Jacob that helped him get through all those rough days in the hospital.

2009-07-06T16:21:00.002-04:00

We went to the beach last weekend to spend Fourth of July at Aunt Abby and Uncle Andy's beach house. Everyone had a lot of fun. So much fun, that Aunt Abby said to Mommy and me that we should do it every year - make it into a tradition.

I told her that it kinda is already. We've been coming every year since you died. This was our 7th year straight in Rehoboth at their house without you. I get kinda sad around the Fourth every year, and I think it is because of the anniversary of your transplant, and the family is together in one of your most favorite places without you.

You'll see that your little cousin Noah isn't so little any more.

2009-07-05T11:24:00.003-04:00

Mom and I both got this email the other day from Matt Brenner. You remember Matt from VarsityBooks. He is in the club of people who I think I look a little like, which includes Dave O. and Jeff Levy. When Mom and I talked to each other about the email, aside from being excited for Matt and Sarah, we asked the same thing, "what's the baby's name?" I thought maybe it is is a Jewish tradition/superstition that you don't announce the name until the bris. Other than that, we couldn't figure it out.

Then we got a call from Matt and it all made sense.

---------- Forwarded message ----------
From: Sarah Brenner
Date: Fri, Jun 26, 2009 at 4:25 PM
Subject: A New Son, and announcement of Brit Milah on July 1
To: Matthew Brenner

With great happiness and joy, we are delighted to announce the birth of our son.

Born: June 24, 2009

1:33 a.m.

9 pounds, 4 ounces

And a full head of hair!

We will be naming him according to tradition at a Brit Milah ceremony (ritual circumcision), eight days following his date of birth. As is customary, no formal invitation is issued -- all are welcome to attend.

The brit will take place on:

Wednesday, July 1, 2009

Ceremony begins at 5:45 p.m., followed by a Seudat Mitzvah (celebratory meal for all in attendance)

Congregation B'nai Israel

2111 Bryan Avenue

Tustin, CA 92782

The commandment for the Brit Milah was the first God gave to Abraham. There is a tradition that this mitzvah should be performed zealously, and so on the eighth day, many people look to perform the brit as early as possible in the morning as a sign of their devotion. While the Rabbis and scholars espousing this view were certainly well-intentioned, it is unlikely that they ever commuted on a freeway. Indeed, successfully attending a Brit at 8 a.m. by commuting on either the 5 or the 405 would not constitute a mitzvah, it would constitute a miracle. So make no mistake: we are excited and blessed to be here today, no matter the time, and thank all of you for joining us.

We are naming our son Hersh Shlomo, Hersh for my father, and Shlomo for Sarah’s paternal grandfather. In English, his name is Henry Sidney, also for my father and Sarah’s grandfather, with thoughts of two others as well.

The name Henry is for my father Harry Brenner. Harry spent his working life as an engineer, beginning at the Navy Department in Washington DC and later starting his own business in Los Angeles, focused on testing and confirming the safety of the critical parts that hold our buildings, airplanes, spacecraft, and even golf clubs together. He also valued Judaism and Jewish life, beginning as an international leader of B’nai Brith Youth and continuing on with constant yet unassuming involvement in his synagogue and B’nai Brith. Most importantly, he was fully devoted to his five grandchildren, babysitting, attending little league games, and generally doing everything he could to support and love them. While he didn’t make it to see our children, his devotion to them is unquestioned. He would get a real kick to know that his grandson is named for him. Long ago, the name Harry began as a nickname for Henry, and so while the names come from the same place, they are different. My dad would have certainly encouraged Henry to be his own man, and not be bound by any path that my father himself had taken.

In naming Henry, we also remember Henry Strongin Goldberg, the son of our friends Allen and Laurie and the toughest guy I ever met. Henry faced overwhelming odds from birth, due to a rare disease that subjected him to medical challenges and procedures beyond anything that any of us can comprehend. During his seven short but full years, Henry did not allow the disease to define him. Instead, he showed constant strength and courage in facing any surgery or treatment thrown his way, all in a fierce and determined battle for what we all take for granted – living a normal life. You only needed to meet him once to understand what it means to completely embrace life, from mixing it up with his brothers to idolizing Batman. His gravestone quotes Harry Potter – The Boy Who Lived – and it could not be more apt. In his short life, Henry taught that one must confront obstacles head on and appreciate all of life’s possibilities, particularly the routine that we take for granted. For our son, we wish some measure of the strength and positivity Henry possessed.

The name Sidney is for Sidney Musher, Sarah’s grandfather and husband to grandma Hadassah. He made great contributions to all of our daily lives and our most important interests. When you look in a supermarket aisle and find food that’s remaining fresh, you see the results stemming from one of the 200 patents Sidney obtained in food and pharmaceutical technology. When you read of Israel’s technological innovation and entrepreneurship, you see an Israel that Sidney envisioned when he initiated the Israel Research and Development Corporation, served on the Prime Minister’s Council for Economic Development, and was a philanthropist and dedicated supporter of Hebrew University and all technological development in Israel. And for the extended Musher family, you see it in the close relationships that all cousins have with each other, made possible by the annual vacations that Sidney and Hadassah sponsored that continue today, most recently in honor of Hadassah’s 97^th birthday.

Finally, in naming our son, we also remember Sidney Daye, the father of Henry’s Aunt Sandy who passed away a month ago. Sidney was a man of quiet strength and devotion, married to Selma for 63 years. Sidney, together with Selma, was a marvelous grandparent not just to his two granddaughters Morrisa and Yonina, but also to their cousins Ariel, Zachary, Jordan and Tali. Henry would certainly have been included in this group. Sidney’s low key demeanor meant that his resourcefulness and dedication might not be readily apparent, but I know first-hand of these traits, following the invaluable and timely assistance Sidney gave to me when my father was dying.

Henry, you begin life honored by the memory of generations, your great-grandfather, your grandfather, extended family and friends. You are surrounded by a loving family, including your sister Tali, Savta Esther, Grammy Ruth, Grandpa David, Great-Grandma Hadassah, and Great-Grampa Morris, over 100 years old and born while Teddy Roosevelt was President (we’ll talk a lot more about TR as you get older). Your broader family of uncles, aunts, and cousins, many who we’re lucky are here today and others who can’t wait to meet you soon, are thrilled that you have joined the family. And you are welcomed by friends near and far, including Tali’s good friend Karen who came over for a midnight sleepover with Tali last week that allowed Mommy and Daddy to make it to the hospital in time for you to be born. Barely in time – Mommy certainly would encourage you to complete projects with plenty of time to spare, as cutting it close to deadlines can be really painful! But whether you have tight deadlines, tough situations or any hardship that may come, you will know that you are surrounded by people who love you and a community that supports you, truly, l’dor v’dor, from generation to generation.

2009-07-02T20:41:00.000-04:00

Hey big man. Mom, Joe and I just got to the beach. We are staying with Aunt Abby and Uncle Andy for the Fourth of July. Jack is at camp - and it appears he is having a good time.

We just showed up and I gotta go eat dinner. I want to take this weekend to catch you up on everything. Let's see if I can do it.

Thinking about you. Loving you.

2009-05-21T09:54:00.001-04:00

Last night Jack, Mom and I were lucky enough to see an advance screening of a movie called "Up." It is a Disney Pixar movie and it comes out in theaters tomorrow. Of course when I see any movie before it comes out in theaters I think back to how you got to see Harry Potter and the Pokemon movie because of the nice people at the studios.

Up has a truly wonderful love story at its center. It also deals with loss. It made me think about the people who I love and who I've lossed. Which is another way of saying it made me think of you. Even though I was smiling and laughing for most of the movie, there were a bunch of times where a few tears started rolling down my cheeks.

And I wasn't the only one.

Without naming names, the other two people with me were affected the same way. Again, without naming names, the person who I was with who isn't Mom, was really moved. I think since he doesn't talk about you to anyone (like I talk to Mom or friends), sometimes his emotions will just burst through. It doesn't happen very often, but I think something like a movie can make that happen. That's why we have art - to help you think and help you feel. Sometimes it helps you "access" feelings you can't normally reach.

I'm glad we saw this movie. I'm sorry we saw it without you.

2009-05-20T13:43:00.000-04:00

Here is another picture of Stacy with Alicia.

I couldn't help wondering what Stacy's parents were doing after 7:30 pm last night. You take your child off life support and then what. Do you go to a movie? Mom had an idea that we would go drive around Minneapolis and visit some of your favorite spots while eating some of your favorite foods.

We ended going out for Chinese food. Everyone. Your grandparents, aunts, uncles and brothers. I think that may have been a mistake. There is one funny story from that meal that I will tell you one day. But not now.

I am sure that Stacy's parents are in shock right now and just going through the motions. Get up. Get dressed. Brush teeth. Cry. It is a very long road ahead.

I've said this to you before, but if you see that little guy - take care of him. You always looked out for younger kids. Part of what made you so special.

Love you so much and I am glad to be back writing to you. The conversation that I have with you in my head never ends. Even if it doesn't show up here.

2009-05-19T22:55:00.002-04:00

Hen, it has been so long since I've written. I wish I wasn't writing to tell you this, but the little fella on the right, his name is Stacy, well, he died tonight. He had Fanconi and his parents took him off life support at 7 pm. We know Alicia, his buddy on the left. She got a great Hope for Henry birthday party and gift.

I feel terribly sad for Stacy and his parents Michelle and Mark. They had to do the unthinkable tonight and help Stacy die.

Here is a journal entry from beautiful Sam McCarthy's mom, Nikki. We visited Sam and her family last month. There's a lot to tell you (we went to the White House and were on TV, Jack came in second in the state finals of the Geography Bee, Mom's book is cruising along, I am probably getting a new job). But for now,

Dear friends and family,

Since the beginning of this journey I have always tried to share all the good things that happen and the hardest parts. Today is one of the hard days. One of our FAmily members will be taken off of life support tonight at 7pm. His name is Stacy and he is five years old. He received his transplant not long after Sam. Unfortunately he contracted an infection in his port recently and it spread to his bloodstream. I remember meeting this little guy in the parent kitchen on the BMT floor. He was a teeny tiny little thing and I really only briefly spoke with his mom to ask wether he was an FA patient when I noticed that he had misshapen hands and thumbs. We have since passed in the elevator and maybe on the BMT floor at times. I never really talked to her much after that but I have spent the last few days crying, grieving and praying for her and her family. Her little dude was the same age as Joe and I am trying to keep from crying every time I look at him today knowing that this mom and dad are making a decision to let their son go tonight. Please pray for them tonight as they do something that is unthinkable for any parent to have to do. The truth of the matter is that he was in the same place as Sam is on any given day. BMT is a lifesaving but very scary process and today FA is taking a young life. I’m sad and scared but grateful at the same time. Grateful that Sam is improving a little bit with the antibiotics and feeling a little better this afternoon. I am hugging my kids and counting my blessings and praying for another mom and family today.

Nikki

2009-04-08T10:32:00.003-04:00

We went to St. Louis for Passover. It is our new tradition. We drove which was kinda tough, but your brothers were great. We saw your Hannah and Aunt Jen and Uncle Dan. We also saw Albert Pujols, who didn't come to the seder but did smack a couple of home runs.

That's a hot dog in a matzoh roll bun, by the way.

2009-03-08T22:47:00.002-04:00

Normally I don't have much good news to report. But it appears that these folks in California have come to their senses. It is so important to keep PGD safe and available for families who really need it.

Originally posted: March 5, 2009
Designer baby plan nixed for now by fertility clinic

The fertility clinic operator who grabbed headlines with his promise to help parents create “designer babies” has backed away from the plan—for the moment.

Dr. Jeff Steinberg, director of The Fertility Institutes, earlier this year had offered parents the opportunity to select their future offspring’s hair, eye and skin color by genetically testing embryos.

After an outcry, he changed his mind. “Though well intended, we remain sensitive to public perception and feel that any benefit the diagnostic studies may offer are far outweighed by the apparent negative societal impacts involved,” according to a statement posted on the clinic’s Web site this week.

Fertility experts were quick to note that science didn’t support Steinberg’s marketing pitch. Although embryos created through assisted reproduction can be tested for some genetic defects, the science of selecting cosmetic traits based on DNA data is not even close to being well established.

“Nobody can do this right now,” said Sean Tipton of the American Society for Reproductive Technology in the New York Daily News.

“The truth is that we cannot (yet) reliably test embryos for eye color, hair color, skin tones and other ‘cosmetic’ features,” warned a statement from the Center for Human Reproduction, a fertility clinic. “It will still take years before all of this will become technically even feasible.”

Distaste for the service that Steinberg promoted was widespread. Writing on her blog The Fertility Advocate, Pamela Madsen, founder of the American Fertility Association, said:
“Some things do need to have some sacred space around it. And the creation of life and the end of life is one of those things that deserves sacred space.”

Even the pope railed against the “obsessive search for the perfect child” last month, according to the New York Daily News. “A new mentality is creeping in that tends to justify a different consideration of life and personal dignity,” the paper quoted him as saying.

Genetic testing of embryos is nothing new: For some time, fertility doctors have been able to examine days-old embryos created in laboratories by removing a single cell and scanning it for known DNA abnormalities.

But so far, fertility experts have used the technique—known as pre-implantation genetic diagnosis—almost exclusively to screen for serious medical conditions caused by well-identified genetic mutations. Some clinics will also identify the embryo’s sex.

Steinberg’s clinic in Encino, Calif., is known for offering sex selection. His Web site also lists operations in New York and Mexico.

According to 2006 data published by the federal Centers for Disease Control and Prevention, the Fertility Institutes transfered far more embryos to women than are recommended under voluntary professional guidelines – a cause for concern. For instance, the clinic transferred an average six embryos to women under 35 years old; the standards call for no more than two embryos to be transferred to women of this age.

There’s reason to be lieve Steinberg will make another stab at marketing trait selection to would-be parents, despite the uproar. “Genetic health is the wave of the future,” he told the New York Daily News. “It’s already happening and it’s not going to go away. ... There’s nothing that’s going to stop it.”

2009-02-17T18:53:00.001-05:00

http://www.latimes.com/news/opinion/commentary/la-oe-mgoldberg17-2009feb17,0,4288749.story

From the Los Angeles Times

Opinion

Select a baby's health, not eye color

Clinics offering to create designer babies may turn people against a procedure that can save lives.

By Allen Goldberg

February 17, 2009

Something stinks about reproductive medicine in Southern California, and it doesn't involve eight dirty diapers.

Recently, the Los Angeles-based Fertility Institutes announced that it would soon be offering patients at its clinics the chance to choose traits such as "eye color, hair color and complexion." The clinics already offer gender selection to patients undergoing in vitro fertilization.

The Fertility Institutes employs a technique known as "preimplantation genetic diagnosis," which allows doctors to screen embryos soon after they are created in a petri dish and implant only the ones that meet certain criteria. The technique was invented to help high-risk families avoid or manage potentially deadly genetic traits, and to help women who've had multiple miscarriages conceive babies they can carry to term.

Now the Fertility Institutes is corrupting this lifesaving clinical procedure by using it to help families create designer babies, and I worry that their excesses will turn public sentiment against all preimplantation genetic diagnosis. That would be wrong.

My son, Henry, was born with a rare and fatal genetic disease, Fanconi anemia. Fanconi patients are born with faulty immune systems and a host of health problems. They are at high risk for leukemia and other deadly diseases and usually die before the age of 30. The only hope is a bone marrow transplant that replaces the immune systems they are born with. The transplants are most likely to succeed if the donor is a sibling who is a perfect genetic match.

My wife, Laurie, and I had always planned to have more children, and in the late 1990s we decided to try to employ preimplantation genetic diagnosis in an attempt to conceive a baby free of the deadly disease who would be a perfectly matched cord-blood donor for Henry. Cord blood is usually disposed of after birth, and harvesting it causes no problems or discomfort for a baby.

We were among the first families attempting the technique, but after three years of trying unsuccessfully, we ran out of time. Henry's health was deteriorating, and he needed an immediate transplant, which he got from an unrelated donor. Ultimately, his body rejected it. In December 2002, he died at the age of 7.

In the decade since we first tried to conceive using embryo screening, the technology has improved and has saved many lives. I get letters and e-mails with regularity from other Fanconi anemia families who were able to conceive babies who saved their siblings' lives.

But not all Fanconi families are lucky enough to live in the United States, where preimplantation genetic diagnosis is legal. The regulation and availability of the technique in the European Union is a patchwork, and some countries ban the practice outright.

I understand that there are ethical issues surrounding the procedure. Not all families are comfortable with creating embryos in the laboratory knowing that some of them will be discarded. And no one would advocate creating a child who is only wanted to save another's life. But the choice of whether to employ screening is a deeply personal one and should be considered with great care by families in consultation with their doctors and genetic counselors.

What I now fear, though, is that clinics offering trait selection to satisfy the whims of parents will turn people against a procedure that can save lives.

Henry was among the most optimistic, wise and courageous people I have ever met. We felt a great responsibility to do everything in our power to save his life. In the end, that wasn't possible. But our efforts contributed to scientific knowledge, and for that we are grateful. Abusing that hard-won knowledge to capriciously choose hair color, eye color and other cosmetic traits in a baby is wrong and repugnant.

Allen Goldberg is a marketing executive who lives in Washington. His blog about his son, Henry, can be found here!

2009-02-17T18:48:00.002-05:00

Benefit for Alise Williams

Posted: Feb 15, 2009 03:37 PM

CEDAR FALLS (KWWL) -- Alise Williams spent her fourth birthday in a Minnesota hospital Saturday. Williams is undergoing chemotherapy and a bone marrow transplant. Williams was born with 7 holes in her heart, and after her second open heart surgery, she was diagnosed with a genetic disorder called Fanconi Anemia.

The genetic disorder, seen approximately one in 600,000 people, causes an increased risk of cancer. William's parents and her 9 year old brother have been living in the Ronald McDonald house, near the University of Minnesota.
To help family through these treatments, friends gathered at the Cedar Falls AMVETS Sunday, holding a benefit for Alise Willimas+
"However, they still have their home here, still have bills. Deb had to quit her job for a year. Troy's taken a leave. Its been a hardship in that way also," said aunt Ladawn Hankins.

The benefit included several raffles and a silent auction. The donations were donated by friends, family, and people who didn't even know Alise.

Online Producer: Jackie Manternach

2009-02-12T12:02:00.029-05:00

Thank god for Dr. Hughes. Always the voice of reason. But where is the outrage from other doctors and everyone else. This doctor who is advocating using PGD for "cosmetic" purposes is dangerous. There are FA families who can't get PGD in the countries where they live, and this guy wants to cavalierly and capriciously cater to the vanity of parents who want to order traits for their kids a la carte.

Just because something can be done doesn't mean you should do it.

This is truly crazy and needs to be stopped before he endangers the techniques life-saving applications. Maybe I'll write a letter to the newspaper.

FEBRUARY 12, 2009

A Baby, Please. Blond, Freckles -- Hold the Colic

Laboratory Techniques That Screen for Diseases in Embryos Are Now Being Offered to Create Designer Children

By GAUTAM NAIK

Want a daughter with blond hair, green eyes and pale skin?

A Los Angeles clinic says it will soon help couples select both gender and physical traits in a baby when they undergo a form of fertility treatment. The clinic, Fertility Institutes, says it has received "half a dozen" requests for the service, which is based on a procedure called pre-implantation genetic diagnosis, or PGD.

While PGD has long been used for the medical purpose of averting life-threatening diseases in children, the science behind it has quietly progressed to the point that it could potentially be used to create designer babies. It isn't clear that Fertility Institutes can yet deliver on its claims of trait selection. But the growth of PGD, unfettered by any state or federal regulations in the U.S., has accelerated genetic knowledge swiftly enough that pre-selecting cosmetic traits in a baby is no longer the stuff of science fiction.

"It's technically feasible and it can be done," says Mark Hughes, a pioneer of the PGD process and director of Genesis Genetics Institute, a large fertility laboratory in Detroit. However, he adds that "no legitimate lab would get into it and, if they did, they'd be ostracized."

But Fertility Institutes disagrees. "This is cosmetic medicine," says Jeff Steinberg, director of the clinic that is advertising gender and physical trait selection on its Web site. "Others are frightened by the criticism but we have no problems with it."

PGD is a technique whereby a three-day-old embryo, consisting of about six cells, is tested in a lab to see if it carries a particular genetic disease. Embryos free of that disease are implanted in the mother's womb. Introduced in the 1990s, it has allowed thousands of parents to avoid passing on deadly disorders to their children.

But PGD is starting to be used to target less-serious disorders or certain characteristics -- such as a baby's gender -- that aren't medical conditions. The next controversial step is to select physical traits for cosmetic reasons.

"If we're going to produce children who are claimed to be superior because of their particular genes, we risk introducing new sources of discrimination" in society, says Marcy Darnovsky, associate executive director of the Center for Genetics and Society, a nonprofit public interest group in Oakland, Calif. If people use the method to select babies who are more likely to be tall, the thinking goes, then people could effectively be enacting their biases against short people.

In a recent U.S. survey of 999 people who sought genetic counseling, a majority said they supported prenatal genetic tests for the elimination of certain serious diseases. The survey found that 56% supported using them to counter blindness and 75% for mental retardation.

More provocatively, about 10% of respondents said they would want genetic testing for athletic ability, while another 10% voted for improved height. Nearly 13% backed the approach to select for superior intelligence, according to the survey conducted by researchers at the New York University School of Medicine.

There are significant hurdles to any form of genetic enhancement. Most human traits are controlled by multiple genetic factors, and knowledge about their complex workings, though accelerating, is incomplete. And traits such as athleticism and intelligence are affected not just by DNA, but by environmental factors that cannot be controlled in a lab.

While many countries have banned the use of PGD for gender selection, it is permitted in the U.S. In 2006, a survey by the Genetics and Public Policy Center at Johns Hopkins University found that 42% of 137 PGD clinics offered a gender-selection service.

The science of PGD has steadily expanded its scope, often in contentious ways. Embryo screening, for example, is sometimes used to create a genetically matched "savior sibling" -- a younger sister or brother whose healthy cells can be harvested to treat an older sibling with a serious illness.

It also is increasingly used to weed out embryos at risk of genetic diseases -- such as breast cancer -- that could be treated, or that might not strike a person later in life. In 2007, the Bridge Centre fertility clinic in London screened embryos so that a baby wouldn't suffer from a serious squint that afflicted the father.

Instead of avoiding some conditions, the technique also may have been used to select an embryo likely to have the same disease or disability, such as deafness, that affects the parents. The Johns Hopkins survey found that 3% of PGD clinics had provided this service, sometimes described as "negative enhancement." Groups who support this approach argue, for example, that a deaf child born to a deaf couple is better suited to participating in the parents' shared culture. So far, however, no single clinic has been publicly identified as offering this service.

Like several genetic diseases, cosmetic traits are correlated with a large number of DNA variations or markers -- known as single nucleotide polymorphisms, or SNPs -- that work in combination. A new device called the microarray, a small chip coated with DNA sequences, can simultaneously analyze many more spots on the chromosomes.

In October 2007, scientists from deCode Genetics of Iceland published a paper in Nature Genetics pinpointing various SNPs that influence skin, eye and hair color, based on samples taken from people in Iceland and the Netherlands. Along with related genes discovered earlier, "the variants described in this report enable prediction of pigmentation traits based upon an individual's DNA," the company said. Such data, the researchers said, could be useful for teasing out the biology of skin and eye disease and for forensic DNA analysis.

Kari Stefansson, chief executive of deCode, points out that such a test will only provide a certain level of probability that a child will have blond hair or green eyes, not an absolute guarantee. He says: "I vehemently oppose the use of these discoveries for tailor-making children." In the long run, he adds, such a practice would "decrease human diversity, and that's dangerous."

In theory, these data could be used to analyze the DNA of an embryo and determine whether it was more likely to give rise to a baby of a particular hair, skin or eye tint. (The test won't work on other ethnicities such as Asians or Africans because key pigmentation markers for those groups haven't yet been identified.)

For trait selection, a big hurdle is getting enough useful DNA material from the embryo. In a typical PGD procedure, a single cell is removed from a six-cell embryo and tested for the relevant genes or SNPs. It's relatively easy to check and eliminate diseases such as cystic fibrosis that are linked to a single malfunctioning gene. But to read the larger number of SNP markers associated with complex ailments such as diabetes, or traits like hair color, there often isn't enough high-quality genetic material.

William Kearns, a medical geneticist and director of the Shady Grove Center for Preimplantation Genetics in Rockville, Md., says he has made headway in cracking the problem. In a presentation made at a November meeting of the American Society of Human Genetics in Philadelphia, he described how he had managed to amplify the DNA available from a single embryonic cell to identify complex diseases and also certain physical traits.

Of 42 embryos tested, Dr. Kearns said he had enough data to identify SNPs that relate to northern European skin, hair and eye pigmentation in 80% of the samples. (A patent for Dr. Kearn's technique is pending; the test data are unpublished and have yet to be reviewed by other scientists.)

Dr. Kearns' talk attracted the attention of Dr. Steinberg, the head of Fertility Institutes, which already offers PGD for gender selection. The clinic had hoped to collaborate with Dr. Kearns to offer trait selection as well. In December, the clinic's Web site announced that couples who signed up for embryo screening would soon be able to make "a pre-selected choice of gender, eye color, hair color and complexion, along with screening for potentially lethal diseases."

Dr. Kearns says he is firmly against the idea of using PGD to select nonmedical traits. He plans to offer his PGD amplification technique to fertility clinics for medical purposes such as screening for complex disorders, but won't let it be used for physical trait selection. "I'm not going to do designer babies," says Dr. Kearns. "I won't sell my soul for a dollar." A spokeswoman for Dr. Steinberg said: "The relationship between them is very amicable, and this center looks forward to working with Dr. Kearns."

For trait selection, Dr. Steinberg is now betting on a new approach for screening embryos. It involves taking cells from an embryo at day five of its development, compared with typical PGD, which uses cells from day three. The method potentially allows more cells to be obtained, leading to a more reliable diagnosis of the embryo.

Trait selection in babies "is a service," says Dr. Steinberg. "We intend to offer it soon."

Write to Gautam Naik at gautam.naik@wsj.com

2009-02-11T13:57:00.007-05:00

Mom said that it is getting time to help her put together the photos for her book. Wow. I am incredibly excited but at the same time intimidated by that. There are so many great photos, I'd want to include them all. It is going to be hard to choose.

Here is a photo of you from the Central Park petting zoo. I "borrowed" it from Nana when she pulled out a big box of her pictures when we were in St. Michaels in December on the anniversary of your death. I wish there was a "hi-def" scanner. All of the colors seem to get muted when I scan the photos.

The good thing is that anyone who wants to see more pictures of you can come here. There will probably be a website for the book with links here and to the earlier blog. Maybe I can put together a mega-slideshow of the best of your pictures for that.

2009-02-11T11:24:00.002-05:00

You remember how your friend Sara Albert was on the show America's Next Top Model, well here is another Fanconi connection for the show. I said that Madeline Finnegan was the prettiest Fanconi patient ever. Now she'll be even more beautiful.

'ANTM' Judge Makes Dreams Come True

Tuesday, February 10, 2009

Though it may seem as if he's capable of crushing a model's aspirations on TV, Nigel Barker is actually out to fulfill wishes – for one lucky 13-year-old girl, that is. The America's Next Top Model judge has worked with the Make-A-Wish Foundation to help out teenager Madeline Finnegan, who has held on to dreams of becoming a famous fashion model for some time.

Finnegan, who hails from the town of Huntsville, Alabama, was flown to New York recently to get the full top model treatment, from the hair to the make-up and of course, the wardrobe. Afterwards, she accomplished her goal of being photographed by one of the industry's best – Nigel Barker. She came home with a portfolio compiled by the America's Next Top Model personality, which she truly delighted in.

Don't Miss

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.

2008-12-21T17:35:00.006-05:00

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.

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.

2008-12-17T23:49:00.006-05:00

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.

2008-12-17T23:10:00.003-05:00

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.

2008-12-16T11:22:00.005-05:00

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.

2008-12-13T22:25:00.001-05:00

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.

2008-12-12T18:18:00.002-05:00

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.

2008-12-11T23:59:00.004-05:00

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.

2008-12-11T22:08:00.008-05:00

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.

2008-12-11T12:35:00.001-05:00

You rode an elephant!

2008-12-09T00:29:00.003-05:00

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^thwhen 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

2008-12-08T21:20:00.002-05:00

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.

2008-12-03T23:46:00.004-05:00

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."

2008-12-01T13:59:00.036-05:00

It has been about a month since I really wrote to you. A lot has happened. Jumping into the not-too-wayback machine, I guess the most important thing to tell you is that we have a new President.

This guy, Barack Obama, was elected to follow George Bush in the White House. Mom and I liked him from when he first announced he was going to run for office.

Hillary Clinton, who is the wife of your buddy Bill Clinton, was running too, but we really liked Obama. He was all about "Hope" which is what we and Hope for Henry are all about. Gotta have hope, right. Here is a bumper sticker that Mom has on the Honda.

I have put nothing on the Defender. It is definitely a brand of truck with a history of travel and adventure that would look just right with some stickers from all over the world, but I've kept it squeaky clean. Well, except for the mud of course.

I spent a few days right before the election helping people in Virginia understand why it would be a good idea to vote for Obama. It was fun driving the Defender on the unpaved backroads in rural Virginia. I bet people were surprised to see Obama things hanging on their doors when they lived in such out-of-the-way places that looked like the mailman couldn't even make it to their house.

Then the night before the election I went to this town nearby where I was in Virginia, called Manassas, and saw Obama speak. It was incredibly cool. He rocked the place. I felt something I haven't felt since the 1984 convention in San Francisco where I saw Governor Mario Cuomo speak. I was living in California at the time and helping a friend of mine who was in charge of the Mondale for President office in that state.

There were tens of thousands of people at the Manassas rally. Mom and your brothers drove there separate from me with Aunt Tracey and Emma and Sam. It was so packed that I never even saw them. I am glad the guys went. We kept talking about history and how lucky it was for us to be a part of it.

We had a bunch of friends and family come over for election night. Mom motivated everyone to walk down to the Vice President's house to say goodbye to the Cheney's after it was clear Obama won. While they were out whooping it up, I just sat in the living room enjoying the relative quiet, savoring the win and wondering what life is going to be like in the coming years. Like Joe, I hope he is good.

This was also the month of Bar Mitzvahs, or is B'nai Mitzvahs or B'nai Mitzvot the right way to say it? Don't know. Anyway, it was Jake up first on your birthday, then Simon and we ended up a week ago with Ari.

Mom and I were talking the other day about all of this. Before everything we thought we might feel really sad especially since they land smack dab in the sad zone between your birthday and your death day. Now that it's all over I gotta admit that I feel very content - not sad. There were times during services where I cried, but overall I felt really good. Good because we were surrounded by friends who we love and who love you and love us.

Maybe it was just me, but it seemed like all of the Torah portions this month had to do with loss. Jake's portion was about the death of Abel. Simon's portion was the Akedah - the binding of Isaac - so I guess that is more about potential loss, unless you were the ram or goat or whatever it was that ended up getting sacrificed.

What's with all the father and son and death stuff?

Frankly, I never considered the Torah to be a place to look/study about your death, but maybe there is something to be learned from all of the stories and commentary.

When we got to Ari's Bar Mitzvah, which was at Adas Israel, we sat down and read the booklet that Sid and Linda prepared.

click

Remember how I said there were times when I cried. This was one of them. In his D'var Torah, Ari focused on "chesed" or kindness. That was a perfect thing for him to talk about since he is so sweet and kind himself. He, like cousin Hannah, shared his Bar Mitzvah with you. It was like a B'nai Mitzvah.

I came across this poem today and it made me think of what Ari said in the booklet.

Do Not Stand At My Grave and Weep

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

Mary Frye, 1904-2004

Of course, the B'nai Mitzvahs weren't just about sitting in synagogue pondering sad stories. We had parties to attend. And the parties, as parties are know to be, were fun-tas-tic!

The best part wasn't the music, dancing, food and wine, though they were awesome, it was being surrounded by all our friends, who are all of your friends and their parents.

So as we hit Thanksgiving this past weekend, instead of being sad I thought hard about at all that you've given us - our friends - and felt really good and at peace.

The holiday was perfect as usual. It is hard to pick a prettier spot than St. Michaels. We did miss Abby, Andy, Michael, Rachael, Josh and Noah, but I'm sure it was nice to celebrate in London. I bet you are very appreciative of the U.S. when you are away for something like that.

We added shooting to the usual football, family, fireplace and FarmAll tractors. Joe, Mom and I shot at this place Pintail Farm that is close to St. Michaels, but Jack decided that he would not participate since he objects to weapons. I respect that.

We came back early on Sunday morning from St. Michaels so Jack, Joe and I could go with Rich and Jake and Jake's grandfather to the Redskin's game.

Before the game they had a ceremony to honor Sean Taylor and induct him into the "Ring of Fame" at Fedex Field.

The guy hosting the ceremony asked Sean Taylor's dad, "Where do you think Sean is today?" That seemed like a very awkward question.

Personally, I'd answer, "Well since he's dead, I really don't have a clue."

Sean's dad didn't look all that comfortable.

I thought he was going to say something like, "He's looking down on his teammates and helping them on to a win." Instead he said, "He's out on a boat fishing."

Okay.

Even though it was miserable out, I liked being at the game. What I don't like, or better yet, who I don't like is the Redskins owner Dan Snyder. While I watched the Sean Taylor ceremony, I looked up to see a huge ad for the National Rifle Association that spanned a number of sections in the stadium. I think that was just in such bad taste considering Sean Taylor was shot dead. Dan Snyder takes anyone's money.

I also cannot for the life of me understand why he allows smoking in the stadium. It is gross. During halftime we went into the stadium concourse to get some relief from the rain and cold. There was no relief. All we could do was suck in the disgusting cigarette smoke that was all over the place. That is so wrong. Fedex Field certainly isn't "family friendly" when it could so easily be.

Dan Snyder has no class and does not care about the health of the people forking over $40 to park 2 miles away from the stadium, which is what we did for the New Orlean Saints game.

I saw this in Jack's classroom the other day.

Pirke Avot 4:1 says,

"Who is rich? He who is content with what he has."

That's from Ben Zoma. I am not so sure Dan Snyder is very content.

Speaking of Jack, November meant learning about new schools for him. Since JPDS ends in the Sixth Grade, Jack is looking at a few new schools, including Maret, Sidwell Friends and JDS. There is something about each school that really appeals to Jack and to Mom and me. Aside from the academics, which are strong at each of the schools, Jack likes the Rabbinics at JDS, the language options at Maret and the standalone coffee shop at Sidwell (Mom was digging that too). There's more to his thinking than that, but for now that's a good summary.

I really like that Jack goes to his interviews at these schools as "Jack." A lot of the other kids we see waiting for their interviews at the Admissions Offices are "gussied up," but Jack doesn't try to be anyone other than himself, and that self includes Crocs (that's a kind of shoe/sandal that people - not me - wear these days) and no socks. Personally, I need layers and layers of socks and thick boots, but Jack appears impervious to the cold.

The most important thing is that Jack is presenting himself well in his interviews, and that plus how well he's done in school hopefully will give him a chance to go to the school of his choice - whatever that ends up being. I'm really proud of him. Maret and Sidwell are pretty close by, so I'd love it if he went to one of those. I know how hard it is to get him out of bed in the morning, so the closer the better.

Liane works at Sidwell Friends and had lunch with Mom the other day. Bella is in 10th grade there, I think, and doing very well. Mom and Liane talked about Mom's book and how Bella factors into it. According to Liane, Bella still has a note from you on her bulletin board in her bedroom. She hasn't forgotten you.

For Joe, the past month has been about football. He is playing on a team called the Ravens and they are in the playoffs.

I'll let you know how far they go, but understand that Joe has excelled on the playing field just as Jack has starred in the classroom. And it seems that Joe is no slouch at school either. When we had a conference with his teacher, she said that he really enjoys school and is a delight to have in class. He is doing very well at learning to do math and to read. I know that it is just as likely we could go into parent/teacher conferences and learn that your brothers need a lot of help with something or need to do extra work, so I don't take all this good news for granted.

What else can I say other than this past month has helped me realize how incredibly fortunate and really content I am. I am a very rich man.

2008-11-23T19:21:00.002-05:00

Justin and Amanda » Remembering Lilly

2008-11-19T14:19:00.000-05:00

I gave Joe the picture book I made for him of photos of you and him, and photos of you playing baseball or with baseball players. You don't look so good in the photos of the two of you, but I didn't have much to work with.

At first Joe didn't understand where it came from. I kidded him that I bought it at Barnes and Noble. Then I explained that I made it on the computer. I think he likes it. I put it up on his night-table.

I think he wanted more text. He is learning to read right now - he read all of Green Eggs and Ham to me last night - and he was looking for words but there is only print on the cover and the back of the book.

Jack was there when I gave it to Joe. I said that I'd make him one if he ever wanted it. I try not to push you in his face 'cause I know he has his own way of dealing with you and his grief.

I think Mom's book will be a much nicer way for us all to remember you. When I read the draft I start choosing photos that go along with the action. I think we can put together a nice little movie of photos and video that can accompany or help sell the book.

2008-11-19T14:10:00.000-05:00

Tough breaks

Having been diagnosed with an illness that affects just two in a million, 24-year-old Ben Murnane has been through more in his life than most of us will ever endure, writes Joy Orpen

Ben Murnane

Also in Lifestyle

By Joy Orpen

Sunday November 16 2008

Ben Murnane is only 24 years old, but already he has been to hell and back. Having been born with a very rare disease, he has visited death's door many times; he has endured terrifying psychosis and has known the joy of recovery.

"From the moment I was born, my parents felt I wasn't quite right," says Ben. "I was small and they had to dress me in doll's clothes. I just didn't thrive, and although I was medically examined, no one thought to do a blood test."

So, the family had no option but to soldier on. Then, in 1993, when he was nine, Ben's physical health began to markedly deteriorate.

"I had excruciating stomach pain and red spots under the skin. My mother heard a programme about leukaemia and she thought my symptoms sounded similar to those, so she took me for blood tests," Ben says.

The investigation revealed his platelet count and red and white blood cell counts were right down.

"This was pretty bad news," recalls Ben. He was immediately packed off to the children's hospital in Crumlin for some serious tests, which initally suggested aplastic anaemia. General anaemia occurs when there is a drop in the number of red blood cells; aplastic anaemia, however, happens when there is a reduction in all three types -- in other words, when the body's bone marrow is failing to do its job.

"The way to fix bone marrow is to have a transplant," says Ben. But as that has its own inherent dangers, it cannot be done lightly, and donors are hard to come by.

Although the doctors were desperately worried, Ben was sent home to spend Christmas with his family.

"There was a very real issue about whether I'd survive," he remembers.

After the festive season, Ben returned to hospital so the aplastic anaemia could be tackled. But on the day the treatment was to begin, the family learned that Ben actually had Fanconi anaemia.

"Aplastic anaemia was a very serious illness, but Fanconi anaemia is even worse," says Ben. "Two out of every million children are born with the disease." Fanconi anaemia is an autosomal recessive genetic disorder, which means that both parents must be carriers in order for a child to inherit the condition. Further tests revealed one of Ben's two sisters was also affected. The Murnanes were devastated, but there was no doubt about the diagnosis.

Ben displayed some of a cocktail of symptoms typical of Fanconi anaemia, including aplastic anaemia, skin discoloration, and small stature for his age. Other possible symptoms include intellectual disability and kidney problems. The Ashkenazi Jewish population carrier frequency of the recessive gene is much higher than in other ethnic groups, at about one in 90. Ninety per cent of Jewish children born with Fanconi anaemia have no thumbs at all. Ben, who is not Jewish, has double jointed thumbs. But the bad news didn't end there.

"Fanconi anaemia patients are hundreds of times more likely to develop cancer, while the average life expectancy is just 22," says Ben in his harrowing, but inspiring book, Two in a Million.

Over the years, treatment would prove difficult and frightening, but ultimately successful. Initially, Ben was put on an anabolic steroid called oxymethalone to boost his blood count.

"Once I was over the shock of being sick, I thought it was a bit of a thrill to have this thing that no one else had," he says. The oxymethalone wasn't working effectively, though. As time went on, Ben required ever-higher doses, and consequently he became bloated, his voice broke early, and he developed horrendous acne. Eventually, when he was 11, Ben was put on another steroid, which led to him becoming anorexic and prone to outbursts of temper.

"What that steroid did was make me go ballistic. My parents were terribly worried. I hit them more than once," Ben recalls. Despite this unruly behaviour, the doctors were unable to take Ben off the medication as his blood count was finally improving.

The theory was that this drug would kick-start the original drug into action. And that's exactly what happened.

But the situation again deteriorated when Ben was 13. His skin got so bad it was like having "dandruff" on his face; he was also terribly tired and developed worrying, but benign, growths.

Eventually, when he was 15, the doctors were finally forced to wean him off steroids -- they were no longer working. Ben was now really sick, and he desperately needed a bone-marrow transplant. The first matching, unrelated donor backed out at the last moment. By then, Ben had already cleared out his school locker and said farewell to his friends -- his chances of survival were only 50/50.

Then an American donor was identified and, in June 2001, Ben headed for Crumlin and began the process.

"The type of bone-marrow transplant I was about to undergo was new, and I was going to become the first person in Ireland to have it," says Ben. "It involved a revolutionary immunosuppressant drug called fludarabine."

Nonetheless, the risks were still very high. On June 20, Ben began radiation. On day six he was moved to the transplant room, a completely sterile environment: there, he was injected with his gift of healthy bone marrow.

"The actual transplant itself was about as undramatic as it gets," remembers Ben. "It was painless and lasted just 10 minutes."

The critical time was yet to come and Ben's patience would be sorely tested.

He had a bumpy ride, haemorrhaging weight, suffering chronic diarrhoea, blood in his urine, considerable pain and finally, a dramatic psychosis.

The physical battles had been going on for some time, and as they got worse, Ben descended into an almost comatose delusional world.

"Over the next few days my mind constructed a nightmare life for me. My parents had been killed in a car accident. The rest of my family had been killed in a plane crash. I'd been sent to a juvenile hospital and tied to a bed. I heard constant screaming. I saw the baby in the next bed being beaten and stabbed by nurses."

Following frantic tests, it was determined that Ben was having a bad reaction to a drug that was fighting a severe infection, which sometimes occurs after a bone-marrow transplant.

Once that was remedied, he finally turned the corner to true recovery. On September 11, 2001, the Twin Towers were attacked; that same day, Ben went home. Now aged 24, Ben has just completed an arts degree, and is busy promoting his riveting and beautifully written book while co-writing a travel guide about Dublin.

He's in great shape now, is Ben. May he stay like that for a long, long time.

For more information, see www.fanconi.org.uk. 'Two in a Million' by Ben Murnane is published by A&A Farmar, €11.99

- Joy Orpen

2008-11-19T13:45:00.003-05:00

Our friend Mitch's son Elan is going through a tough time. Mitch and his family were so good to us when you were alive and when you got really sick. It was nice that Hope for Henry could do a little something for Elan.

Elan is a hip guy and he’ll pull through

2008-11-07T14:51:00.001-05:00

Jasper’s brave fight

04/Nov/2008

Jasper Miles and mum Brooke.

JASPER Miles is one of only four children in WA with a rare life-threatening disease, but his mum Brooke has hope a cure will be found so he can outlive her.

Diagnosed with fanconi anaemia in February last year, the five-year-old has blood tests every three months and bone marrow tests every year to make sure his condition has not worsened.

Jasper has a high risk of developing head and neck cancer, leukaemia and bone marrow failure and has a life expectancy of 29.

Brooke said she and husband Paul had to be positive about the future and “not be reactive but proactive”. Having an early diagnosis helped.

She said the doctors could not explain Jasper’s abnormalities such as his small size when he was born and after years of blood tests and referrals from pediatricians to geneticists since he was six months old, the rare diagnosis was made.

“We are actively looking for a bone marrow match and are on the national registry,” she said.

“We feel it gives us more control.

“He is healthy at the moment and we don’t really need to worry about things too much.

“If you’re not positive then what else have you got?”

Brooke said Jasper, who only had a 25 per cent chance of being born with fanconi anaemia, had some idea he had the disease.

“We told him he has special bugs and got half from mummy and half from daddy,” she said.

“He says ‘I don’t want my bugs’ and ‘why do I have to have them?’.

“He asks a lot of questions and we try keep answers as simple as possible.”

Brooke, Paul and Jasper have met other families dealing with fanconi anaemia and Brooke said they offered each other much- needed support.

She said in the past year alone, with medical research and advancements, the life expectancy had increased from 21 to 29.

“Medicine moves foward and you have to have hope,” she said.

Brooke is fundraising to raise money for further research into the disease. She sells key chains and other items and said she wanted to increase public awareness about the disease.

“There is something special about the FA kids and we have to do what we can to find a cure, because if we don’t no one else will,” she said.

“As much as it is awful and wouldn’t wish it on anyone else, we wouldn’t change him for anything. You can take it with doom and gloom and look at it the negative way, but that’s not going to get you anywhere.”

To donate, visit www.fanconi. org.au. And check out Jasper’s website at www.jaspermiles.blogspot. com.

2008-11-07T14:06:00.001-05:00

Wanted: ethnically diverse blood donors

Stem cell match sought for brothers, 7 and five months, with rare genetic disease

November 07, 2008

Elisabeth Johns
The Hamilton Spectator
(Nov 7, 2008) It was Keswick Blake's first time giving blood.

The father of three hopes his donation yesterday will inspire others of ethnically diverse backgrounds to give blood and register to donate stem cells.

His two sons, seven-year-old Lucas and five-month-old Owen, have rare blood diseases and desperately need to match up with a stem cell donor.

But there still aren't enough people from ethnically diverse backgrounds donating to find a match, said Teri Crutcher, a donor management co-ordinator with One Match Stem Cell and Marrow Network.

Blake is Jamaican and his wife, Manuela, is Portuguese.

Their sons suffer from Fanconi anemia, a rare genetic disease that destroys the body's ability to reproduce blood cells.

While Owen is doing well, Lucas's condition is causing him to be much more physically weak and tired, Manuela said.

Lucas is home-schooled to avoid catching a cold, which would debilitate his already weak immune system.
Both boys need a marrow transplant, Lucas much sooner, his mom said.

The Canadian Blood Services needs more people who are black, biracial or of European descent to register to donate stem cells to better find a match for the two boys.

Since The Spectator first wrote about the family's plight in September, 3,900 people have registered to donate stem cells, up from 1,700 in the September-to-November period last year.

They still haven't found a match, though.

In Canada, 83 per cent of stem cell donor registrations are caucasian, which includes Portuguese.
Less than 1 per cent of stem cell donor registrants are black, Crutcher said.

"There are a lot of misconceptions surrounding stem cell donation in ethnic communities," Crutcher said.
"It is a hurdle for us to overcome," Crutcher added.

Some recent immigrants voice superstitions around giving blood, while other misconceptions include unwarranted fears the stem cell donation procedures are painful, she added.

Canadian Blood Services has been making inroads in diverse communities and is working with student groups at colleges and universities, including McMaster, to encourage people to donate, she said.

"Canada's population has grown more diverse over the past 10 years," she said.

"As the face of Canada changes, we have to respond to that."

When people register to donate stem cells, they must be matched first before actually donating. To register, go to www.onematch.ca.

2008-11-07T12:31:00.001-05:00

allen has shared a photo book with you.

22 pages, contains 23 photos

He has been saying how he wishes he knew you. I hope that this helps him. It can sit on his night table with all of his baseball books.

Link to view this photo book:
http://www.photoworks.com/photo-sharing/shareSigninBook.jsp?shareCode=A3E67C1C68B&cp=ems_shr_alb_emb&cb=PW

Skip viewer, buy this book now

2008-10-28T10:34:00.000-04:00

Last night when Joe was getting into his pajamas, he wrapped your karate white belt around his waist.

He said to to me that he wished he were older when you were alive. I asked why, and he explained that he feels he doesn't know you all that well.

He was so young when you died.

I pointed out to him a picture of the two of you together that sits on a shelf in his room. He was in a stroller and you were all swollen with steroids.

2008-10-27T17:25:00.005-04:00

We just got your brothers' school pictures. They're kinda handsome themselves. No sign of me anywhere.

It looks like they took Joe's picture either after a trip to the water fountain or after recess. Knowing your brother, that is sweat on the front of his shirt. Joe loves to sweat and to point out that he is sweating. A big source of pride for him.

They are loving their long hair. Mom wants to cut it just so they can see. I'm neutral. I figure they'll ask for help when they need it. It isn't just them. Take a look at these photos I took of them with Sam and Joey Shoyer this weekend at Butlers Orchard. They could all be brothers, or Beatles.

2008-10-27T17:21:00.002-04:00

Hey, check out Dr. Rosenwaks. Mom saw this in a newspaper this weekend. I always used to joke that somehow his patients all got pregnant 'cause he was just so good looking.

We never really got close. I know he respected and cared about Mom a lot. I still remember the day we all busted into his office.

2008-10-25T17:32:00.003-04:00

Happy Birthday. We went out to the cemetery after Jake's Bar Mitzvah. It was pouring so hard that we didn't spend much time with you. Mom bought a pumpkin - she is so smart - to put on your headstone. I left a Barack Obama button (off of Mom's coat) and Grandma Phyllis' grave. I am sorry she isn't alive to see what is about to happen.

I guess it was fitting that in one of the driest Octobers ever, it should rain and be dark and dreary. Friday beautiful. Sunday gorgeous. Saturday smokey, rainy and miserable.

The Bar Mitzvah was great. It was warm and perfect. Jake was impressive. You'd have been proud of your friend.

To have you with me, I wore one of your old kippahs. It is falling apart. It was a good reminder of you.

For the Torah service, I read Bereshit and then Helaine read and then Jake's aunt and his uncle and grandfather. I felt like I was part of the family which made it very special. I got a great hug from Richard when I came down from the Bimah. I know he was welling up with incredible pride for Jake and his beautiful family, but he was also thinking of you.

It was interesting that the Rabbi made mention of Adam and Eve's "excruciating" loss of Abel, "the loss of a child." But I read the text and commentary and there seemed to be no mention of how Adam and Eve felt when their child died. They just went and had a replacement kid - Seth.

Pretty amazing that the loss of a child is right up there at the very beginning of the Torah.

Jake did his D'var Torah on Cain asking God, "Am I My Brother's Keeper." As Jake pointed out, Bereshit is the most-well know part of the bible, but I felt like I didn't really know it all that well. I want to read into it a bit more.

Of course, being your birthday made it extra emotional for a lot of people who were there. I looked down our aisle and saw Nana and Papa, and behind us were Ari, Simon, Alex, Sid and Susan. We were surrounded by all our friends - everyone who'd be there for your Bar Mitzvah or the annual dinners we have on your birthday at Cactus Cantina ever since you died.

Strangely and unexpectedly to me, I wasn't emotional or anything when I was up there reading. I was in a zone and actually my mind started to wander while I read - it went for about 10 minutes because you go through each day of creation - but not to any place sad. I had been sad leading up to it all.

I had gone to the synagogue on Thursday to get a sneak peak at the Torah when Jake was having pictures taken and doing a run-through for the Cantor. While I sat there and watched Jake practice his speech, tears rolled right down my cheeks. Also, when we were over at their house earlier in the week to eat in the Sukkah, I watched an early cut of the video that Helaine made and I welled up.

It wasn't the picture of you and Ari and Jake and Simon that made me sad. It was thinking that I wasn't going to make this video for you, or maybe that I will. Here is the shot that Helaine put in of you guys. Me being me, I grabbed them at the Bar Mitzvah party and took an updated photo. Ten years later and everyone's still pretty good buds.

The party was a lot of fun. Jack got into it more than I've seen at any other of these. Personally, I'm not in love with the Kayne West shades or trucker hats, but it was good that everyone else was letting loose.

2008-10-24T11:25:00.001-04:00

This is what I would have wanted out of James Christopher's parents when they met President Bush. They have black bears down in Louisiana.

You can be respectful and voice an opinion that is contrary to what the President believes. As I said to someone recently, if I were James Christopher's dad, I would ask the President "How can you look at my boy and not do everything in your power to save his life?"

It all just seems so passive and capitulating - which is a big word for "giving up." This is life or death.

October 19, 2008, 8:36 pm

Provoking Palin’s Inner Bear

By Julie Bosman

Just call her Mama Bear.
Gov. Sarah Palin said Sunday that the hardest part about public life as the Republican vice-presidential nominee was the news media coverage of her children. That, Ms. Palin said, brought out the grizzly bear in her.

“The toughest thing has been the shots taken against the kids, against the family,” said Ms. Palin, according to a partial transcript of an interview with WWOR, a television station that serves New York City.

“They’re my kids. The mama grizzly bear in me comes out, makes me want to rear up on my hind legs and say, ‘Wait a minute.’

2008-10-24T11:03:00.001-04:00

2008-10-23T14:41:00.001-04:00

CBS Evening News: Obama Recalls Emotional Moment With Family, McCain Cites Meeting Mother Of Killed Soldier

(CBS) In November, Americans decide whether Barack Obama or John McCain becomes the 44th President of the United States. In the series "Presidential Questions," CBS News anchor Katie Couric asks questions that move the candidates well beyond the usual sound-bites. Some questions concern policy. Others are more personal. All will give you a better sense of who these men are - and what has shaped them. What follows is Couric's question - and the candidates' full answers.

Katie Couric: When was the last time you cried and why?

Barack Obama: This one is actually easy. It was Malia, my 10-year-old daughter's, birthday party.

We were in Montana. And you know, she's a Fourth of July baby. So often times, during this campaign, we'd be traveling during birthdays. And so we were in this small hotel, I think a Holiday Inn, and we had this big public thing.

The staff organized for a smaller family party. And we were in this little, non-descript conference room, with Malia and Sasha, Michelle, me, my sister, my brother-in-law and my niece. And there was a cake. And there was some food, which wasn't, you know, stellar. And the staff had put together an iPod of all of her favorite music: The Jonas Brothers and Beyonce. And we just spent the evening just dancing. And we were all dancing to their favorite songs. And they were laughing because, you know, obviously their daddy's dancing is ridiculous. And Malia came up and said, "This is the best birthday I've ever had."

And she meant it. And I looked at her and I realized, you know, that she was growing up. And that she was wise, and turning out to be somebody who would say that to her Dad even if she didn't mean it, just to make me feel good.

And yeah, it chokes me up right now talking about it. Yeah, my kids can get to me every time.

John McCain: I cry regularly.

Couric: You do?

McCain: Aw, yeah. You know, I'm very sentimental. When I see these young people who are serving. I met a woman at a town hall meeting the other day who had lost her son in Iraq. And, I was so touched, because she talked about how proud she was of his service.

And what a fine young person he was. And whenever you have that experience, obviously you think, how could I ever - how could I cope with such a tragedy, you know? And so you know, when I say cry, I get - my eyes well up, as they are right now thinking about these brave Americans and their families who have sacrificed so much for their country, especially recently.

2008-10-22T11:03:00.007-04:00

I guess it is easy to see Joe's "presidential wish." At least it isn't "Gross Weiner."

Mom told me that a woman who walked by the house said that Joe's sign is her favorite Barack Obama campaign sign. She said that she likes walking by the house and seeing the sign. I am sure it makes a lot of people smile.

That's Joe's "too cool for school" look.

2008-10-22T08:05:00.002-04:00

I know this is totally shallow of me to say (especially when we are talking about such a serious disease), but Blaise and Madeline are the most handsome looking FA kids I have ever seen. They don't appear to have the "tell-tale" close set eyes. They seemed to have been spared the severe birth defects.

I wonder where Hampton Cove is.

October 21, 2008

Scott and Nancy Finnegan learned last year that both their 17-year-old son, Blaise, and 13-year-old daughter, Madeline, have Fanconi anemia. They will eventually need bone marrow transplants to survive.
Madeline and Blaise also have aplastic anemia, meaning they have lost some bone marrow, and is being treated by a Minneapolis doctor who specializes in Fanconi anemia.

On October 31st, a bone marrow/blood drive sponsored by Life South will be held at Hampton Cove Middle School in hopes of finding a donor for Blaise and Madeline. Siblings are usually the best bone marrow donors, but the Finnegans’ youngest child, 8-year-old Trinity, is not a match.

The ordeal began in March 2007, when Madeline, now in her final year at Hampton Cove Middle School, went to the doctor because of stomach pain and vomiting. Her pediatrician suspected appendicitis, but tests showed problems with her red blood cells, white blood cells and platelets.

Eventually, Madeline developed sores in her mouth and throat and was sent to St. Jude for a bone marrow biopsy; she was diagnosed with Fanconi anemia a few days later.

Fanconi anemia is a genetic blood disorder that causes bone marrow failure and often leads to acute myelogenous leukemia. Even after bone marrow transplants, Fanconi patients have an increased risk of developing cancer and other serious health problems.

Blaise, a Huntsville High senior who plays bass guitar and golf, was diagnosed while being tested for a bone marrow match for his sister. Neither child appears sick, but must be careful to observe signs related to Fanconi anemia.

Madeline and Blaise will eventually need a match if their bone marrow continues to fail. Nancy is Mexican, so there may be an increased chance to find a match within the Hispanic ethnicity; but we encourage all to support the effort in finding a positive bone marrow match.

We are asking for your support at the bone marrow/blood drive on October 31st at Hampton Cove Middle School from 7a.m.-7 p.m. Bone marrow testing is a painless swab of the check with a Q-Tip.

For more information, please contact
Chanda W. Davis at 256-755-4600 or Stacy Copeland at 256-428-8380

2008-10-21T23:07:00.010-04:00

While I think it is great that James Christopher got his wish - he deserves it - and it reminded me of you and President Clinton, I have trouble understanding how these folks can be so enamored of a President who doesn't support measures that are necessary to save James Christopher's life - namely, federal support for embryonic stem cell research.

The bone marrow drives are great but they are only a small part of the total picture of what's needed to save James Christopher's life.

What do you do once you identify that donor.

As Dr. Wagner points out, the life saving advances in stem cell transplantation for FA and other diseases have been made possible because of research on embryonic stem cells. I guess it is convenient for everyone in the article to overlook this truth. Or they understand that completely and are what we call up here in the North: "hypocrites."

Along with President Bush's very public opposition, Rep. Alexander, who appears to have coordinated this visit, votes against expanding embryonic stem cell research whenever it comes up in the House of Representatives.

Unfortunately prayer and the President's confidence aren't going to save James Christopher - better tissue stem cell and umbilical cord transplant protocols and therapies will.

My "presidential wish" is that we elect a leader who will take the hard but necessary steps to save James Christopher's life and other kids like him.

Monroe boy gets presidential wish
By Greg Hilburn • ghilburn@thenewsstar.com
October 20, 2008

Young James Christopher Allums is going to have a tough time topping Monday’s field trip, and he’s got the T-shirt to prove it.

Allums, 11, who’s fighting a rare, possibly terminal bone disease called Fanconi anemia, met President Bush in Alexandria, then toured Air Force One with his parents, Ellen and Chris Allums.

“I was nervous and excited — both,” said James Christopher, who said he has been a fan of Bush since he was 4 and his parents, freelance florists and decorators, were among those called upon to provide flowers for Bush’s first inauguration.

Fifth District U.S. Rep. Rodney Alexander, R-Quitman, arranged the meeting, and Alexander and Bush began waving to James Christopher soon after they stepped off Air Force One at Alexandria International Airport.

“We were just beaming, and tears were pouring down my face,” Ellen said.

Bush hugged all of the Allumses and put his hands on James Christopher’s shoulders.

“He said, ‘You’re a strong young man, and I think you’ll be just fine,” the boy said.

Allums’ parents have dedicated the past few years to searching for a bone-marrow match for their son. Without one, Chris said, his son’s disease is fatal.

The Allums have signed up more than 10,000 people to the bone marrow register — at about $55 each — during multiple marrow drives. Their efforts saved five lives last year, but so far the search for a match for their own son has been in vain.

“I talked to the president about trying to raise more money (to fund marrow drives), and he turned to Congressman Alexander and asked him to get more information about it and get it to his desk,” Ellen said. “It was an unbelievable blessing.”

The Allums, who home-school their son to keep his exposure to illness at a minimum, also prayed with Bush at the airport.

“We asked him if we could pray for him, and he said yes,” Chris said. “He was so down to earth. He looked into your eyes, and you knew that he was interested.”

Alexander said his ability to arrange such meetings is the best perk of his position.

“It was very touching,” the congressman said. “It makes all of the heartaches and politics of the office worthwhile.”

After the Allums left the airport to each lunch, they were called back by the White House staff for a tour of Air Force One.

“The cockpit was unbelievable,” James Christopher said. “We got to sit at the president’s desk and see his bedrooms and bathroom. There were also a bunch of TVs.”

As they were leaving, the staff presented James Christopher with an Air Force One T-shirt “and a bag of other stuff, too,” he said. “It was great.”

2008-10-21T21:37:00.001-04:00

John just made this video for Hope for Henry. It has some photos and video of you. I guess it answers, "Who's Henry?" for anyone who doesn't know how the Foundation got its name or its start.

Hope for Henry Video from Allen Goldberg on Vimeo.

2008-10-21T16:22:00.012-04:00

Mom can't sleep and I've had a headache for the past two days. Hmmm. Wonder what that could mean. Oh, it's your birthday this weekend, of course. Nothing gets us feeling as down-low, low down as your birthday and your deathday.

I don't know what I can do to make Mom feel any better. I actually bought her a couple of things that I plan to give her on Saturday. Everyone likes to get presents, but I wonder if this will just bum her out more. It's your birthday and Mom is getting the gifts, while you are getting rocks (see below) which reminds me of Charlie Brown. He got rocks on Halloween.

This birthday is pretty significant. You'd be 13 on Saturday. It would be your Bar Mitzvah. So instead of spending the morning in synagogue with our family and friends celebrating you becoming a man, we'll be spending the morning in synagogue with family and friends celebrating Jake becoming a man. It is a really nice coincidence that Jake's Bar Mitzvah is this Saturday. Ari can't be there, but Simon will. Nana and Papa Sy are coming.

I found this picture f you guys from what looks like the start of school a bunch of years back. Check out Helaine and a very young Abby in the background.

If I were to generalize, Jake is the cut-up athlete, Ari is the stylish sweet one and Simon is the handsome rogue who will break a lot of hearts when he get older. I wonder how I'd characterize you in 3 words or less if you were still around. Here's how it would go for your brothers: Jack is the brain and Joe is the athlete. Who knows if that'll still be the case years from now. They're still "forming."

Let's talk about Jake for a second. He has turned into quite the young "man." I really like him, and like spending time with him. What strikes me first is his energy. He is wired in a good way. And he has Richard's affable charm, and Helaine's wicked sense of humor. You cannot overlook that he is a tremendous athlete. One day he may have to choose between the Astros (his favorite team) and singing his song parodies on Saturday Night Live.

Jake is also a leader. He was just elected co-president of his class or the middle school or something. He told us that he was running against the "Gross/Weiner" ticket. Only in a Jewish school!

Mom and I bought him a New York Jets Brett Farve jersey for his Bar Mitzvah present. His liking teams way outside this market, the Astros and the Jets, is part of his goofy charm. He is also a very good friend to Jack and treats Joe really well - I know he would still be one of your closest friends.

I am going to read Torah at the Bar Mitzvah. I am first at bat with the recitation of the story of creation. It goes through all of the days and it is soooo looooooong. A whole lotta Torah goin' on. Not sure if you are supposed to reprint the Torah just anywhere, but this is it.

See what I mean. It has taken me forever to learn and practice, but I've been driven to do it to honor you, Jake and Helaine and Richard, who have been such good friends to us. Aunt Jen helped me with it. She could chant this with both arms tied behind her back. Me, a different story.

Mom noted that I haven't read or listened to music or anything for weeks and weeks. To me, and to oversimplify it a lot, this is the Bar Mitzvah you'll never have, and I want to do a good job.

We'll head over to the cemetery after the lunch. I have this idea about imprinting a message like "We love you Henry" on the rocks we leave on your headstone. There is a Jewish custom of leaving pebbles on graves to show they've been visited. I was thinking there might be a business in etching pebbles for people to use. I bet there is a Jewish Mortuary Association, and you could market through. Whatever.

I'd love to have a bunch of different messages that we could leave through the years. We can leave them in a bag tied to the tree so others can grab a nice rock when they visit you. I'm working on it.

And if it isn't squeezing too much in, maybe we'll get Joe to his Yankees game before going to the party that night. Both Jack and Joe are invited to the party, and Joe promises to show off his dance moves. I should probably bring the movie camera.

Hey, before I go and talking of "squeezing," Joe keeps setting up lemonade stands out front. It seems like every day he is rushing out to sell his wares on the street.

Maybe he'll make the move from Joe the athlete to Joe the entrepreneur someday. You gotta love the way he spells cookies.

2008-10-21T16:19:00.000-04:00

There is a quote from this comedian Woody Allen where he says,

"Eighty percent of success is just showing up."

I think he got it wrong. Eighty percent of success is following up. I think I spend most my days following up on things. You say or ask for something once, and then you spend the rest of the week asking again and again and again until it gets done. That's my life lesson for today.

2008-10-13T17:26:00.007-04:00

How cool is this. I am so excited for Mom. But I probably won't be able to stop worrying until I see it on a bookstore shelf. I just tried to pre-order the book, but the site won't let me 'cause it is only for people who live in Canada.

Speaking of bookstore shelves, this is really crazy but when I was walking through a bookstore in Boulder last month that Mom said I had to visit, I started thinking how sad it would be to see your face sitting on a book jacket on a shelf in some store.

It seems like a weird thought, but it is like you'd be lonely.

And what might be worse is if the Saving Henry book jacket gets torn or thrown away. Of course, I treat anything with your picture on it like it is a holy thing, but that's me. Maybe your picture won't be on the cover of the book.

But if I were designing and marketing it, I'd definitely put you on there. You're impossible to resist. Actually, a picture of you and Mom would be best. That way you won't ever be lonely.

It is a love story, after all.

2008-09-30T13:38:00.002-04:00

Hen, I have a bunch of photos of Mom, you, Jack and Joe on my desk at work. The only other photo I have is one of Barry Simon.

Maureen Roy Photography: In Memory of Barry Simon

2008-09-29T14:34:00.003-04:00

2008-09-24T23:01:00.000-04:00

This is what I mean when I say you were so darn cute.

Henry, the Superhero Negotiator from Allen Goldberg on Vimeo.

2008-09-24T22:57:00.000-04:00

Henry and Me at St. Michaels from Allen Goldberg on Vimeo.

2008-09-24T13:31:00.003-04:00

I haven't been able to tell you about Mom's project until now. Check this out. This is huge.

Hyperion Memoirs

Hyperion executive editor Leslie Wells bought world rights to Laurie Strongin's Saving Henry in a deal with Heather Schroder at ICM. This memoir will describe the author's struggle to save her son, who suffered from a rare childhood illness called fanconi anemia, as well as the impact Henry's courage had on the many nurses, doctors, friends and family who interacted with the boy throughout the family's search for a cure. Pub date is spring 2010.

2008-09-22T14:07:00.001-04:00

Nana just got back last night from visiting your cousins over in London. We're the next to head over. We leave on Thursday for a week, including Rosh Hashanah. Here is a picture of Nana, Aunt Abby and Rachel.

Papa Sy was heading to the airport to pick up Nana when he stopped by our house for a while because her flight was delayed. He was treated to an evening of home movies of you.

Mom is working on a project and to help her I've pulled out some of our Henry videos to watch. I thought I transferred all of the tapes to DVD, but obviously I didn't. We sat watching things that we never knew we recorded. It has been incredibly awesome and incredibly sad watching you.

I was wondering how it was affecting Papa Sy to sit there with us, especially since he is in some of the movies with you. He's old school. He doesn't wear his emotions on his sleeve, which is to say if it made him sad, he wasn't going to let it show or say anything. But it had to hurt.

The funny thing is while I watch those movies, what enters my mind is wondering how the heck can you be dead when you were so darn cute and we were having so much fun. I know Mom is thinking the same thing.

Mom told me later that it is really hard for Joe to see these video. When Mom took him up to go to sleep, he asked her if you could come back for just a day so you could play with him. He said that he'd do anything you'd want - if you wanted to play baseball, he'd play baseball with you. If you wanted to play soccer, he'd play soccer with you. Mom says that he is really upset that he doesn't know you well.

I can understand that.

2008-09-22T13:03:00.001-04:00

2 kids have rare blood disorder

By MICHELE MANDEL

Monday, September 22, 2008

HAMILTON -- Lucas Blake cradles his baby brother in his arms and the 7-year-old gazes at him with dark eyes full of love.

They are more than brothers; they are soldiers in arms. Baby Owen was supposed to be his saviour. Instead, he has joined Lucas in the same struggle to survive.

And as their father watches his two ill sons, all that keeps ringing in his ears are Lucas' words when he found out, "But Daddy, who's going to help me now?"

Lucas came home from his Grade 1 class last January complaining he wasn't feeling well. A bundle of energy who usually loves horsing around with his older brother Noah, he was suddenly overcome by fatigue and running a fever. His parents, Manuela and Keswick, initially assumed it was just the flu. It was only when they told their family doctor that they'd noticed Lucas had been bruising recently that something more serious was suspected.

After weeks of tests, the Blakes were given the devastating news: Lucas has Fanconi anemia, an exceedingly rare, genetic blood disorder. He needs blood transfusions to keep him alive, but his only hope for a cure is a bone marrow transplant.

Through their tears, his parents were suddenly seized by hope. In the midst of trying to find out what was wrong with their son, Manuela, 41, had discovered she was pregnant.

"We only planned on having two children," says Keswick, 37, with a sad smile at his beautiful family sitting around the kitchen table. "When we found out she was pregnant, we thought for sure it was a miracle."

Their miracle baby had to be the answer. Lucas' big brother wasn't a bone marrow match and neither were his parents. The new life growing in Manuela's womb became the focus of all their hopes. "I just thought God gave me him for a reason," she says. "He was going to save Lucas."

Owen was born in June but tests eventually showed that despite their months of prayers he could not be a donor for his brother. "To get that news," Manuela confides softly, "it tests your faith."

But there was more. Several weeks ago, they were called into a meeting at McMaster University hospital for news even more crushing -- not only can Owen not help his brother, but he needs his own saviour -- he has Fanconi anemia as well. Now the Blakes face the Herculean struggle of finding not just one bone marrow donor, but two to save their boys.

ETHNIC BACKGROUNDS
What makes their quest even more difficult is their ethnic backgrounds: Keswick was born in Jamaica and Manuela in Portugal. The boys' best chance of finding donors is within their own ethnic group, but no one in their extended families is a match and about 75% of the people on Canada's one match stem cell and marrow registry are Caucasian.

Shy and private, it is obvious that speaking about their family's ordeal is excruciating for both parents, yet they have no other option but to come forward to appeal to readers, especially those from their communities, to register as potential donors at onematch.ca.

"We feel so helpless," Manuela says, as she rocks the baby to sleep. "We're leaving our kids in someone else's hands and begging, 'Please fix them.' We're pleading to the public because we don't know what else we can do."

Joining the donor registry is as simple as requesting a kit from OneMatch and sending back a few swabs of the inside of your cheeks. That DNA information is then stored in their database for potential patients around the world.

If a match is made, the transplant is usually much simpler than it used to be when bone marrow was drawn from the donor's hip. With the newer peripheral blood stem cell transplant, a drug stimulates a donor's bone marrow to release stem cells into their bloodstream. Those cells are then harvested from their blood and transfused into the patient.

Since the search for Lucas began in March, no match has been found. "We're pleading with people of different ethnic backgrounds to find it in their hearts and get tested," Keswick says. "If it doesn't help our kids, it might help other kids out there.

CAN'T GO TO SCHOOL
"Just look at those boys and help them," he begs. "It's hard to watch them slip through your hands."

The life expectancy for those with Fanconi anemia is just 22 years. Lucas' health is already failing and because his immune system is so weak and he can't risk infections, he can no longer go to school or play with a lot of other kids. Visitors to the house are asked to wear a mask and when Lucas does venture outside, he puts on one of his disposable Mickey Mouse masks as well.

"Kids make fun of him," his mom says.

"He gets really depressed about it," Keswick adds. "He's always asking, 'How long is this going to take?' "

Owen is too young to understand what he is facing. But Lucas hears it all -- how he might die, how his parents are terrified. He watches them fight back their tears in front of a stranger and soon the little boy can't help crying as well.

His mother quickly draws him to her, hugging him close with one arm, cradling his baby brother with the other. "This is my soldier boy," Manuela whispers to him. "He's my strong boy. We're going to fix it, aren't we, baby? Yup, we're going to fix it."

Please help them try.

2008-09-19T17:15:00.001-04:00

Mom and I had dinner the other night with a new friend. He works at Disney. We spoke about you. He is someone, like our friend Hugh, who I think would have really wanted to know you.

I made this picture just now to send to him.

You were a big fan of Disney World. I think the hugs make that pretty obvious.

2008-09-18T12:10:00.001-04:00

I was with you in a dream last night. You were in the hospital and appeared to be doing okay. I was visiting you. It took a while to get there. We had to navigate around a huge ditch and all this other weird stuff.

We had a good time together but near the end of the dream I was in the hallway of the hospital outside your room and some doctors and nurses asked me what was wrong with me. I told them that I had a dream and in the dream I saw clearly that you were going to die.

How about that - a dream inside a dream. I can't remember that ever happening before. I stayed awake right after I woke up from the dream. I had trouble holding on to the part where we were together.

2008-09-14T22:47:00.001-04:00

I got up at 4 a.m. so I could get back in time to go with Mom and your brothers to today's Redskins' game. Mom and the guys picked me up at the airport and we went straight to Fedex Field.

It was hotter than the surface of the sun and Jack was definitely not-too-thrilled to be there, BUT it was an amazing game and we won.

The game was so exciting that even Jack came around. He was hi-fiving everyone. The Skins beat the Saints 29 - 24. It was perfect.

Joe had been saying forever that I'd taken you and Jack to Skin's games, but he has never gone. Today we fixed that. He turned to me during the game and said, "Dad, thanks for bringing me to the game." That was even sweeter than the victory - which was pretty sweet.

When we got on the shuttle bus to go to our car, these older guys were asking Joe if it was his first game. He said it was and then we all got to reminiscing about our first games. Mine was one of the most famous in Redskin history. Walt Garrison was dropped, and I'm talking dropped by Ken Houston just short of the endzone to secure a Monday Night win over the Cowboys. I was there with Papa Teddy. I'll never forget it.

I hope Joe will always remember today.

2008-09-13T23:50:00.001-04:00

As I told you, Mom didn’t come to the Bat Mitzvah, so it was a huge relief when this woman walked up to me before services and introduced herself. It was Rachel Grossman, who aside from being the mom of Jacob and Talia, wife of Alan and resident of Chicago, has the distinction of having once had a conversation with you. Jacob has FA and when he was diagnosed she got in touch with us through friends and family. I remember talking to her, and Mom visited with her on a trip to Chicago. But what really made me light up was when she reminded me that she and you had a nice talk with you on the phone about what to do to make transplant at University of Minnesota a better experience for Jacob.

Your prescription: Magic Closet.

I didn’t ask her if they actually implemented the whole “closet in Jacob’s transplant room filled with toys and other surprises that produce magic to heal pain and boredom” when needed thing. I hope so. Dr. Henry Strongin Goldberg knew what he was talking about.

Rachel and I sat together and marveled at the beautiful ark. It was huge. I had never seen so many Sifrei Torah in a single ark before. I think there were at least 12 and they went all the way up to the ceiling. I had visions of rabbis suspended by wires –Mission Impossible style – flying up to grab the uppermost Torahs. We were looking for words to describe it and I think we settled appropriately on “awe inspiring.”

But the old scrolls really couldn’t compete with Molly for our awe. There she was up on the bimah. As she and the Rabbi and Lisa all acknowledged, she shouldn’t have been there. As we know all-to-well, Fanconi kills kids, but in Molly’s case, love, science, doctors and faith all came together to create a modern day miracle. People throw around the word miracle a lot. It describes everything from a fake mayonnaise to a World Series championship, but I am confident that everyone sitting in that synagogue was privileged to witness the real deal.

Molly leading services, reciting her portion and delivering a D’var Torah was probably the most wondrous and wonderful thing that I will experience for a long, long time. It was, as Mom knew it would be, probably one of the saddest things we could experience as well. It was as concrete a reminder of you dying, of us failing, as most anything could be. But as I explained, I like hitting my head on that wall.

In her remarks, Molly talked about her portion and how it tied in to her remarkable life story. Her takeaway was the importance of humility. She said that it was incredibly humbling knowing what it took to get her to that moment. From her parents to her doctors to god, she fully understood how much work, sacrifice, innovation and love it took to bring her to the bimah. In addition to humility, Molly showed great wisdom- wisdom well beyond a Bat Mitzvah but befitting someone who has traveled the difficult, almost impossible journey she has made in her short 14 years.

I was humbled being there. I was honored to be there and that Molly and her parents thought to make us a part of the service.

2008-09-13T13:12:00.002-04:00

I had a few hours to kill before Molly's Bat Mitzvah tonight so I headed to the hills. I went from Denver up to Boulder to go hiking. Mom told me exactly where to go.

Mom used to live in Boulder after college. She worked on a bike race called the "Coors Classic." I know she loves it here.

I went on a hike up to a peak called, Royal Arch. I figured it would be good training for the trip to England, since they're a monarchy. That means they have a king or queen.

When I got to the top, I pulled out a poem I've been carrying around with me a while waiting for the right place/moment to read it. It is called Threnody and it was written by Ralph Waldo Emerson about how sad he was when his first son, Waldo, died of scarlet fever. This happened way back in 1842, and I found the writing very hard to understand. But there were parts I "got" and could relate to.

You're my darling, wondrous, hyacinthine, gracious boy.

Here is just a short part of the poem from the beginning. I thought the mention of "looking over the hills," was cool considering I was reading it up 7,000 feet high.

Threnody

The south-wind brings
Life, sunshine, and desire,
And on every mount and meadow
Breathes aromatic fire,
But over the dead he has no power,
The lost, the lost he cannot restore,
And, looking over the hills, I mourn
The darling who shall not return.

I see my empty house,
I see my trees repair their boughs,
And he, —the wondrous child,
Whose silver warble wild
Outvalued every pulsing sound
Within the air's cerulean round,
The hyacinthine boy, for whom
Morn well might break, and April bloom,
The gracious boy, who did adorn
The world whereinto he was born,
And by his countenance repay
The favor of the loving Day,
Has disappeared from the Day's eye;
Far and wide she cannot find him,
My hopes pursue, they cannot bind him.
Returned this day the south-wind searches
And finds young pines and budding birches,
But finds not the budding man;
Nature who lost him, cannot remake him;
Fate let him fall, Fate can't retake him;
Nature, Fate, men, him seek in vain.

2008-09-12T12:28:00.005-04:00

Mom and I were planning to go to your friend Molly's Bat Mitzvah tomorrow. But the more Mom thought about it, she realized just how hard it would be. Yesterday, I had to make a decision. Would I stay home with Mom and your brothers, or head to Denver to see Molly become Bat Mitzvah. My first responsibility it to take care of Mom, Jack and Joe, but I also felt strongly it was important to go be with Molly and her family.

I am now on an airplane looking out at the clouds. Being up in the clouds is totally different since you died. When you are little — at least it was for me — you think that heaven is up here in the clouds. Whenever you see a cartoon, or TV show or commercial and they show heaven, the people or angels are hanging out on clouds. So this is where dead people go.

Even though I'm all grown up now and I know that out this window is just frozen water vapor, I am crying.

Mom asked me how I made up my mind to go. I told her that I wanted to honor Molly and Jack and Lisa and the rest of their family for all that they've been through. It has been such a hard road — perhaps only they and we can really understood just how difficult it really was — and they have made it. Molly is here. She made it.

I also told Mom that I often think about how sweet and amazing it was that they all came to Washington for your funeral. That was an emotionally and physically superhuman thing for them to have done at that time.

And the last reason is maybe a bit more selfish.

Mom and I grieve you in different ways. It is tough to describe Mom's grieving because it is so personal. But the best way to describe it for me is that I charge head first into things that might make me think of you. Sad and/or are hard to do is what I crave. Because for me, the sadder I am… the closer I feel to you.

I have this need to be close to you, and it is getting harder as the years go by.

On the bus on my way to work yesterday I was reading a story Jeffrey wrote about this guy John McCain, who is running for president. Here is part of what he wrote,

"After John McCain was released, in 1973, he learned that on several Christmases during his captivity, his father had traveled to the northernmost reaches of American-held territory, to be as close to him as physically possible."

For this weekend, at least, the place for me to be is Denver.

Here’s the capper.

Yesterday I was scanning some stuff to put on here and on the new blog I started for Joe. The first thing I scanned was this rainbow that Joe's drew at school the other day for me and Mom.

Next in line was Molly's invite.

When I picked it up to place it on the scanner I saw that she and her parents included words from the song Over the Rainbow.

"Sometimes the dreams that you dare to dream really do come true."

You know how I am a sucker for coincidences. That sealed the deal.

So here I am. Over the rainbow. In heaven. With you.

2008-09-11T21:44:00.001-04:00

EVELYN HOWELL/HERALD STAFF WRITER

ROANOKE RAPIDS - For young Dylan Moore, the wait for a bone marrow transplant is almost over.

His mom, Betsy Moore, gave him the good news on Friday that a matching donor has been found.

The 6-year-old has Fanconi anemia - a rare blood disorder that leads to bone marrow failure.

In a few weeks, Dylan and his family will travel to Minneapolis where he will undergo a delicate bone marrow transplant at Fairview University Children's Hospital.

“There are only about 500 cases in this country and not many doctors have seen this case, so we had to choose the doctor who had the most experience in treating this disease,” said Moore.

Two years ago, Dylan was diagnosed with the rare disease and since then, his condition has been slowly deteriorating.

Last year, he could not attend school because his immune system was too low - meaning his body could not fight off germs and potential infections.

He was home schooled by means of an online system.

”He was forced into isolation when his blood count fell so low,” said Lenn Roberson, Dylan's aunt, and one of many champions Dylan has in his life.

“I try to be there for him, but I guess the hardest thing for him is to not be able to go to school and see his friends.”

Because the procedure is such a high risk, Moore said that her family waited as long as they could to go without choosing the surgery.

With his bone marrow functioning at only 30 percent, the family's options are now limited.

“We didn't want to go (with the procedure) unless we had to and at this point, we don't have a choice,” Moore said.

Even after the transplant Dylan will still be facing some difficulties.

“Dylan realizes he has a challenge ahead of him but he is a real trooper,” said Moore adding, that she is nervous, scared, excited and hopeful about her son's outcome.

This Sunday, the family will host a going away party for Dylan, who turns seven on Sept. 18, where friends and supporters are invited to come and join in on the celebration at the Union Hall on Roanoke Avenue from 3 p.m. to 7 p.m. Family members request no gifts, only to stop by for a few minutes.

“We appreciate all the support of our friends, family and the community,” said Moore.

2008-09-11T21:39:00.001-04:00

Freshman Again...: Essay #1 "When Bad Things Happen To Good People"

Wednesday, September 10, 2008

Essay #1 "When Bad Things Happen To Good People"

When Bad Things Happen To Good People

About six years ago, my cousin, Jenny Shields, died of a very “rare, inherited bone marrow failure disease” called Fanconi Anemia. Jenny is 1 of only 3,000 known cases in the entire world today. She was only twelve years old when she died and I was only thirteen. When Jenny was born she was not much bigger than a Barbie doll in size and they never could figure out what was wrong with her. Jenny was diagnosed at the age of ten and was on a waiting list for two years for a bone marrow donor. Time meant everything.
Jenny’s bone marrow was supposed to do so much more than it was. It was only producing five percent of the blood cells it need to and if she did not get a bone marrow transplant soon then she would run out of time. The doctors told her that her white counts were so low that even if she contracted something as little as an ear infection, it could be critical. The process that Jenny and her parents had to go through was so intense and intricate that I could not see how anyone could go through such a thing. The family tried a number of procedures, but the bone marrow transplant was the only hope left. Despite that the disease was robbing her of life’s “sustaining blood cells”, she still seemed as happy as ever.

Jenny always looked toward the better side and had hope for her condition. Her joy and great presence made it so much easier for those who surrounded her in this sad time. She could no longer go to school, doctors were telling her they could not help her, and she did not even know if she had a fighting chance, but somehow she stayed strong. Jenny wanted to be a veterinarian and saw herself with a future. She wanted to be a normal child and grow up. She had the mindset that everything would be okay and some how she made everyone believe her.

There was a group of older ladies in the community around Louisville, Kentucky, where Jenny was from. The women each wrote a prayer on a small quilt square. They all pitched in and made her one big quilt with each of their quilt squares. Jenny loved the prayer quilt with all her heart. It was beautiful and full of the nicest prayers I had ever heard. Once, when Jenny was asleep my aunt, Jo Ann, took it from the bed and washed it. When Jenny woke up, she found out and was heartbroken. Jenny thought that because my aunt washed the quilt then all the prayers were washed away along with it. Jenny usually was able to hide hear fear in the inside, but when it came down to it she was even more scared than everyone else.
Since most doctors knew very little about her disease, she was forced to an out of state specialist for her treatment. In the whole United States, there were only two doctors who specialized in Fanconi Anemia and could give her the help she needed. One was in Memphis, TN at St. Jude and the other was in Minnesota. Jenny and the family traveled to Minnesota to meet with the doctor who specialized in her case. A doctor who knew a great deal about Fanconi Anemia was a wish come true.

The first procedure they tried was having my aunt get pregnant so they could use the baby’s stem cells from its umbilical cord to cure her. My aunt was not capable of having kids anymore; therefore, they had to artificially inseminate her other daughter’s egg, along with my uncle’s sperms, into my aunt. Every time they went through this and the baby’s stem cells did not match they had to terminate. My aunt, Jo Ann, went through this procedure five different times. One of the times she was pregnant with quadruplets, but none of them matched. The last time they tried, the baby finally matched and everyone was so happy, but Jo Ann ended up having a miscarriage. Money was becoming a very big issue and they could not afford to keep doing this emotionally or financially. Can you imagine how devastating that must be? To be so close to saving your own daughter and being denied happiness again?

After they had lost all hope on that course of action, everyone was hoping for a miracle. Jenny was getting very sick and needed some type of cure soon. They never found a perfect match for a bone marrow donor, but they did find someone who was as close as they were going to get. They set the time and date for the bone marrow transplant for the very next day. Finally, more hope at last.

I remember flying in and going to see how Jenny was. The hospital was so white and huge. It was crowded, noisy, smelly, and full of hurt and sadness. How would anyone be happy spending their last days in that environment? Jenny was already in surgery when we got there. It all happened so quickly. We received the phone call the night before and the next night we were there. No one had any idea what to expect. The next day everyone got to see her and find out how she was. She seemed well, even great for someone who had surgery just hours before. I only got to see her for a minute, but I still could never forget it. I was so relieved that she was okay. I could not bear to loose not only my cousin, but a great friend.

The whole day everyone kept their hopes up that everything would work out successfully. We had to wait and see if her body would accept the new bone marrow and it seemed as if it was going fantastically. That night it went bad. She hit rock bottom. Jenny all of the sudden became dreadfully sick. I was back at the hotel. I remember hearing the phone ring. Immediately, we knew something was wrong. My grandma called and said it did not look good. We kept on praying. Then, the phone call came. That one phone call I would never wish upon anyone. Jenny was dead and it drastically changed everyone’s life at in an instant. Together my mom and I cried. It could have been for minutes, maybe even hours. I had no idea what to do, or how to react. All I knew was it had to be a lie. It had to be a joke, an awfully mean joke, but it was not. All hope was gone forever. Jenny, my cousin, my friend was gone forever.

The next week was Jenny’s funeral. My mom, my sister, and I flew to Kentucky, where Jenny lived, and my dad drove from Arkansas to meet us there. Once we got there we went to stay with my grandma and the mood around us was indescribable. It was silent and sad. I was only thirteen and did not know if I did not know how to accept that she was gone for the better and that God wanted her to live a better life there in heaven. Should I be angry with him? When someone so young, so close, and so wonderful is taken away from you, it is hard to know how to react.

The day before the visitation, we went to my great grandma’s house to see everyone and see how everyone was doing. We ate dinner and the whole time everyone looked so depressed. The family talked about how Calvin and Jo Ann, Jenny’s parents, were doing and it seemed like they were definitely not good. Jo Ann could hardly speak to anyone and Calvin would not speak at all. They both were in a major depression and the next day, when I saw them at the visitation, I immediately began to cry. Calvin hugged me. He knew how close Jenny and I were and we were almost the same age. I was surprised he even came up to me. I believe it was the saddest time of my life.

Before the funeral the next day, they played a slideshow of Jenny and there was not one dry eye in the funeral home. This big vintage, distasteful funeral home was already sad looking enough. The tears and closed casket did not help matters. The people were all so sad and I knew exactly where they were coming from; I was sad too.

As everyone drove to the grave yard that stormy sad day, I could not think of anything else except what had happened. Jenny was such an amazing young girl. She was nice to everyone and she did not ask for much. All she wished for was to be a normal child. Everyone gathered in the cemetery to watch her casket be carried to the gravesite. All the people there came around and put a flower on the casket. As tears ran down everyone’s faces, the preacher said a prayer and a few nice things about Jenny. We all watched as the casket was lowered into the ground. At that time, I knew Jenny was watching down from heaven and that she was in a better place.

The loss of my cousin, Jenny, hurt her friends, family, and even people who barely knew her. She was the girl who would have made a great impact on the world. Still now, I think of Jenny every single day and I wish there could have been a way for me to make a difference, to save her, or at least say goodbye. Why do bad things have to happen to good people?