For our anniversary, last night Mom and I went out for a nice dinner and then we went to see Todd Snider. He is the guy who wrote "Beer Run." I loved singing that with you and Jack. I always say that is how you guys learned to spell.

Bill and Cristina met us at the show. It was a really nice evening.

I was online today poking around and I noticed that Todd Snider has a song about Cape Henry. That is the place near Virginia Beach that we visited not too long after you died. It has a lighthouse.

For some reason I am not too sure about I like songs that take place during or are about the Civil War. Scott Miller and Steve Earle have songs that tell stories that take place in the Civil War. Now I can add Todd Snider to the list. This one is a little different from the ones he normally does. There is no mention of beer or love or the president or beer.

Speaking of love, he did sing two songs for his wife who I think was sitting in the audience. One of them is below. It was incredibly sweet.

This is the Cape Henry Lighthouse.

Cape Henry
Unreleased

Cape Henry, Cape Henry
Battle field on fire
On water, white water
With them flames climbing higher
We fired our cannons
For at least two hours or more
Cape Henry, Cape Henry
That old Virginia shore

Well I served as a sailor
It was back in '81
I can't say that I'm sorry
I volunteered for what I done
We trained and we waited
But we would not be outdone
Then one day, six battle ships
Came out of the rising sun

So we all manned our stations
yeah we passed a jug of wine
We waited in patience
Waited for a sign
First thunder, then lightning
Then a ringing in my ear
I can still hear that screaming
Even after all these years

Cape Henry, Cape Henry
Battle field on fire
On water, white water
With them flames climbing higher
We fired our cannons
For at least two hours or more
Cape Henry, Cape Henry
That old Virginia shore

Our deck was in tatters
That smoke was think and black
For each shot that they fired
We fired two right back
Then up in my shoulder
Something knocked me down
The last I remember was that water all around

Cape Henry, Cape Henry
Battle field on fire
On water, white water
With them flames climbing higher
We fired our cannons
For at least two hours or more
Cape Henry, Cape Henry
That old Virginia shore

So I woke up in Richmond
With a medal on my chest
I know that I earned it
Cause I know that I done my best
We did lose that battle
But I heard we won the war
So I headed back home to
Recieve my reward

I plow this man's field now
From morning until night
That war took my left arm
I'm working with my right
I guess I fought for the freedom
Of richer men up north
But I still fight for something
This plow goes back and forth

Cape Henry, Cape Henry
Battle field on fire
Hunt water, white water
With them flames climbing higher
We fired our cannons
For at least two hours or more
Cape Henry, Cape Henry
That old Virginia shore

All My Life
From Happy to Be Here

Driving all day we both said nothing
You threw your face in a magazine
I tuned in to the oldies station
Flew away in a time machine

This world is so amazing
The sun is shining and it's raining too
I waited all my life for you

I don't mind sometimes not talking
Sometimes there ain't a thing to say
Anyway I know what you're thinking
And I kinda like it when you think that way

I think I'll just keep on driving
Anywhere will do
I waited all my life for you

All this time I knew you were out there
All this time I knew someday I'd find you somewhere

Some people tell you everything they think of
Say yes I will and then they never do
Sometimes I gotta ask you to speak up
Everything you say is true

Say you'll be mine forever
Never leave me blue
I waited all my life for you
I waited all my life for you

Your soccer team was the Dophins. They mentioned that in your obituary. I don't think your Takoma Park T-ball team had a name. Jack is playing for the White Sox of Bethesda Chevy Chase Little League and Joe is once again a Pirate in the Capitol City Little League.

The Pearls are a great family. Reading this made me very happy for them.



Eureka Boy Who Underwent Rare Bone Marrow Transplant Now A Little League Shark

By Deanne Lane

(KSDK) - There are many stories and many people I've met during my more than 20 years at NewsChannel 5. I've perhaps learned the most about hope from Matthew Pearl, a 10-year-old Eureka, Mo., boy -- make that young man.

Matthew has experienced and been dealt more in his young life than many of us will in a lifetime.

To call Matthew and his family survivors is an understatement. The Pearls have watched not one, but two of their children battle a life-threatening blood disorder known as Fanconi anemia.

Matthew's sister, Alex, had a rare bone marrow transplant years ago and continues to get strong. Matthew underwent a similar procedure almost a year ago and still has a long way to go.

"It's hard to breathe. He is having breathing issues. We are checking pulmonary -- it's gonna be follow up for years. It's nine months post, so to be out here and going to school and in our home and in bed is absolutely a blessing. It's unbelievable," said his mother Diane.

Matthew is not only back at school, he is playing Little League baseball with his buddies. His teammates on the Eureka Sharks team have also learned from their friend and his ordeal.

"He scored the first run of the year. The kids came and picked him up. We lost that game and none of them cared. It's been great. It turned out to be what I hoped it would be. The kids all learned from it. They all stuck together as a team and I don't think anybody had any other thoughts. The only way it could be would be that he'd be back out this season. It's been great," said coach Blake Fischer.

The next step for Matthew and his family? They hope to meet his donor and extend their thanks.

I cannot believe how hard this must be for a family to have a kid or kids with FA and have something else major to deal with. This family in Chicago could be sent away from here, but hopefully the government will be nice to them. There are families with FA kids with a parent fighting in the war in Iraq. It is doubly unfair.



Family taking a risk to save infant

Undocumented residents are making a public appeal to other area Latinos to submit to bone-marrow screenings in hopes of finding a possible donor for their 16-month-old child, who is in desperate need

By Mary Owen
Tribune staff reporter

May 11, 2007

Felipe Aguilera needs a bone marrow transplant, and doctors say his chances of finding a match are greatest among other Latinos.

On Thursday, his family and local activists said they worry that undocumented Latinos may be afraid to be screened because it could tip the government to their illegal status. That would limit the pool of potential donors, they said.

The bouncy, wide-eyed 16-month-old cannot find a match in his family or in the National Marrow Donor Program registry.

As illegal residents, Aguilera's parents said they risked speaking with the media to save their son, who was born in the U.S.

"If he's trying and wanting to live, why would I not ask for help?" said his mother, Nancy Aguilera, of Aurora, whose three children are U.S. citizens. "I'm here to ask all people in our community to help save my son's life."

The family has planned free bone marrow screening drives this summer in the Chicago area to boost the chances of finding a match for Felipe. One is planned for 7 p.m. Friday at Alamo De Aurora, 2445 Church Rd., Aurora.

Drive organizers urge the estimated 12 million undocumented immigrants from all countries to be screened and placed on the bone marrow donor registry, a nonprofit organization that compiles potential donors. Information is private and not shared with government agencies, according to registry officials.

"There is a fear in our community, but there should be no fear," said Julie Santos of LifeSource, a local nonprofit that collects blood and blood products. Santos also is co-chairwoman of the United Voices for United Families campaign, which supports mixed-status immigrant families.

Felipe is battling a rare bone marrow disease called Fanconi anemia, which weakens the immune system and can lead to leukemia and cancer even after a transplant. He was diagnosed at birth and has undergone two transfusions and seven surgeries.About 35,000 people seek matches each year, according to the registry, and about 3,100 have transplants. There are 580,000 Latinos listed in the donor registry and lower numbers for other minority groups. Bone marrow screening is noninvasive, requiring only swab samples from the four corners of an individual's mouth.

"We put a lot of effort into all of our minority groups, and there are several barriers in all categories," said Steve Lovelace, a registry spokesman. "There's fear of the system, the concerns of undocumented individuals and just lack of normal medical access across the board."

The search for a donor will take the family back to Mexico this summer. Bone marrow screenings are scheduled in Durango, Mexico, where Nancy Aguilera was born.

Stone Park Mayor Beniamino Mazzulla contacted government officials in Durango, which is the west suburb's sister city. Stone Park will host a rodeo May 27 to help pay for the family's trip.

"He's a happy little kid for someone who is going through such medical trouble," Mazzulla said. "He's a fighter and we want to help that fight."

For more information about free local bone marrow screenings, call 847-736-5160 or 630-701-5122.

----------

mowen@tribune.com
Copyright © 2007, Chicago Tribune

Mom and I have been married for 14 years today.

I went to visit the Hasbro company for work. Hasbro, which makes Mr. Potatohead (not to be confused with Joe's fish, Potatoman), is located in Pawtucket, Rhode Island. How cool must it be to work there?





I remembered from driving through there a bunch of years ago that they have a minor league baseball team in Pawtucket. Maybe it was when we drove back from Boston after your hand surgery - I am not sure.

I picked up hats and t-shirts to bring back with me for your brothers.





They were pretty "underwhelmed," which means they weren't very psyched. Me... I was pretty bummed.

Way back in the 1970's, Papa Teddy went to Minnesota for business. He brought me back a purple Vikings hat with a yellow pom-pom on top. I loved that hat. I think I slept in it. I was a huge Redskins fan, but I also liked the Viking's "Purple People Eater" defense.

My first experience bringing something back for you was when I bought a small University of Michigan basketball in the Detroit airport when I had traveled there for work. I was so excited to bring you back something from my travels. It felt like a very grown up, very "Dad" thing to do. I didn't like to be away from you, but I was excited to bring you something back and see you smile. I didn't care if you were smiling for me or for the gift. I just loved to see that smile that was too big for your face.

Mom explained that because we already spoil the guys with so much "stuff," these gifts aren't really a big deal for them. She's right. I definitely go overboard. A lot of it is leftover from trying to keep you happy when it you were in so much pain. I told my friend Sally, who I am traveling with a lot, to remind me not to buy stuff.

Mom came back with all sorts of stuff from China for the guys and all the cousins. She even found Skittles with Chinese writing on the package. The guys were totally psyched about those!

Joe got to put a prayer in the Wailing Wall. I asked him what was his prayer and he said that he prayed that you didn't have to die. I was hoping he was going to say that. And he did.

Jack decided he doesn't want to keep studying guitar. It is too bad. He was able to play Sweet Home Alabama! Whenever I heard him start, I'd say "Turn it up" just like they say on the Skynyrd track.

So far Jack has taken piano, saxophone and guitar lessons. He chose all of these himself. His teachers have said that he is good. But he doesn't like to practice and he quits. I keep telling him he should stick with something 'cause it just gets harder to learn when you get older. And he has skills which makes it even sadder.



This is Jack with his "Biome Mobile" whatever that is.

Mom is bummed that he quits stuff and so am I. Jack needs to learn that he needs to keep working at things - even when they get hard. It is Mom's and my job to help him understand the value of hard work and hustle. He is really super smart, but that only gets you so far. It isn't enough.

I wrote Michael back and told him what happened.

---------- Forwarded message ----------
From: Michael Heck
Date: Apr 25, 2007 10:31 AM
Subject: Henry
To: allengoldberg@starpower.net


Hello Mr. Goldberg,

I am a premed student at Virginia Commonwealth University in Richmond, VA. We have (briefly) discussed your case in my class, Faith and Life Sciences.


We read an article, from 2001, about your family and the Nash family, and I did a quick Google search to see how Henry was doing now. I’m glad to see he’s still doing well.

I’m sorry I am unable to help financially or medically (yet!). I’ve attached a song by my band, Laden Angel. It’s titled “It Happened To A Man.” Our singer wrote it after losing many friends to car accidents, but it has helped me and many others through difficult times, and I hope it will do the same for you…should you ever need it.

I wish Henry and you both all the best of luck in the future.

Sincerely,

Michael Heck

Fanconi Anemia Chemo Cap Project

Fanconi Anemia Chemo Cap Project

This is a photo of John Smith and his Mom from 2 years ago on his birthday. You can see what he looked like without the steroids.

He died last night.

The Southern Civil Rights and Music Tour has come to an end. Jack is back. He is kinda tired and closed-mouthed about everything, so I'll give him space and time to tell me all about his trip.

It is nice to have Jack back.

They are going to film another Toy Story movie - Toy Story 3 - in 2010. That isn't as far off as it seems. Tom Hanks, the guy whose picture I took last month, will be back as the voice of Woody and Tim Allen, will again be Buzz Lightyear.

I read John Smith's website and it looks like he made it through last night down there in Nashville. That's good. I am really pulling for him to get better.

I just got my own call from Nashville and our Southern trekkers are visiting the XM studio that is in the Country Music Hall of Fame. I miss the people who I worked with in Nashville. They are all the nicest people. I am jealous of Jack. I told them to make sure they see all of the plaques of all of the people enshrined in the Hall. Elvis, Johnny Cash and Ray Charles are all in there; it is cool.

Mom is picking up Jack later today. He is going to be a "UAM." That means he is flying as an "Unaccompanied Minor" without any grownups. I am proud of his independence. I cannot wait to hear all about the trip.

Yesterday we went to Nana and Papa Sy's for a last night of Passover seder. I never heard of that before but Nana explained that it is a tradition for some people. I am excited to stop eating Matzoh. That happens at sundown tonight.

Since you guys were born only 2-days apart, Rachel reminds me how old you'd be now. She is very grown up and beautiful. She sews now. I am sure she is going to be good at whatever she chooses to do. Michael is a great snowboarder and Sam is an amazing skier. All of your cousins are incredible, impressive kids. Watching them grow up is fun.

During the meal last night, I was thinking back to last year when I went up to New York around Passover. I went up to help XM broadcast the Downtown Seder. I hope they keep broadcasting stuff like that and Radio Hanukkah.

I like traditions, but at the same time I'd like to do a more high tech seder. I want to show videos along with the normal Hagaddah stuff.

This is a video I watched right before the first seder last week and I thought it was important, especially when we are so focused on slavery and freedom and justice.



I would have shown that video and this one if we had video added to the seder. There are a lot of people dying right now. It is hard to take especially when we don't know if our soldiers are still fighting for people to be free.

Hey, speaking of high tech, one thing I don't understand is why they don't sell motion sensor controlled faucets and toilets for people's houses. That would save a lot of water. I only see them in airports and stadiums. Maybe one day.

I love you.

This little guy is a lot like you. He is a handsome kid. I love the red hair. And those guys in his bed remind me of you and your beanie babies.

This is from his Mom to the Fanconi anemia discussion group.

John Smith needs your prayers
Posted by: "Judy"
Sat Apr 7, 2007 8:10 pm (PST)

Hello Fanconi Family, I come to you to ask for your prayers. John has been admitted to the pediatric critical care unit, and was placed on a respirator today. They don't know yet what is causing the problems with his lungs, but he is very sick right now and in a medically induced coma to let his little body rest. The doctor did say that the next few days are going to be critical and will tell if he will pull through once again or not. I am not ready to say goodbye to my little one, but if the Lord is ready to call him home, I will have to accept it not matter what. I just pray that the Lord doesn't let him suffer either way.

John's mom,

Judy

Unfortunately, even though John had a great match for his transplant he has GVHD and now is having problems with his lungs just like you did. He is in the Intenstive Care Unit at Vanderbilt Children's Hospital in Nashville, Tennessee. Nashville is where Jack, Hannah, Uncle Dan and Aunt Jen are heading today. Aunt Jen went to law school in Nashville, and I used to go there all the time for XM. It is a nice town. I hope it isn't "smokey" there today.

This is rough. I hope he pulls through.

Here is the blog that Uncle Dan started to help us see what they are doing on their trip. Jack looks very happy.

thelowfamily

I can't wait to see him tomorrow. Sounds like they are having an amazing time.

I have written you in the past about how FA patients are often really good athletes. Here's one.

March 31, 2007


Kuell finds new life after anemia misery

BY MIKE CHERRY
FLORIDA TODAY

To watch Brian Kuell pound his groundstrokes or attack a volley this spring, one would think much of his time has been spent on a tennis court.

Actually, Kuell has spent more figurative time in recent years in the woods. He is still not out of them.

"There's no point in worrying about something I have no control over," Kuell said after a recent match. "It's wasted energy, if you ask me."

The 18-year-old Kuell is a senior at West Shore Junior/Senior High and the No. 2 singles player for the Wildcats. He is 7-2 in singles -- he lost one match subbing at No. 1 -- and 9-0 at No. 1 doubles with the squad's top player, senior C.J. Johnson.

Those are good credentials, ones that rise when Fanconi anemia, which Kuell has, is considered. Because of that inherited disease, Kuell missed not just his junior-year tennis season, but that school year. He spent nine months receiving treatment at the University of Minnesota hospital, a stay that ended early last year.

"Last year at (about) this time," said Kuell's mother, Carol, "we didn't know if he was going to come back with us. Everything he does is an accomplishment."

The 5-foot-10 Kuell downplays his return to competitive tennis. What else, he thinks, should he be doing?

Still, there cannot be many high school players competing this spring who have had bone-marrow transplants.

"He is a huge positive influence on the team," West Shore coach Jim Rossi said.

Once a junior-tournament competitor, Kuell is perhaps through with team tennis after this season. He will attend the University of Florida next school year and study business. He has no plans to attempt to play for the Gators.

"I want to play for fun," Kuell said.

Even at Florida, Kuell, who lives with his parents in Melbourne Beach, will still have his blood checked every four months, plus take an annual visit to Minnesota for a bone-marrow biopsy. Although the blood problems were taken care of with the transplant, there is still the increased threat of cancer because of the Fanconi.

"It still isn't over for him," Carol said.

The disease was first discovered in Kuell about five years ago. His tennis coach, Tracy Singian, noticed he could not last as long in training sessions. One initial thought, Kuell said, was that he was merely fatigued from the end of football season (he played for a West Melbourne junior team). Blood tests, however, discovered the disease, which attacks the bone marrow and can also lead to leukemia.

In 2005, the disease worsened, causing his blood counts to drop.

"He was basically dying," Carol said.

After the first donor was not able to donate, a second, a fireman from San Antonio, was found. Kuell first had chemotherapy to kill the rest of the old cells. He then accepted the transplant, which entered the body through an IV. That was a critical time for Kuell, who was susceptible to numerous diseases and ailments because the white blood cells were temporarily gone.

"He threw up a gallon of blood one night," said Kuell's father, Bill.

Kuell had developed an ulcer. There were worries about infection and kidney and liver failures. Yet Kuell's health improved and he was finally released early last year. His parents spent the nine months with him in Minnesota, staying in an apartment.

"While we were up there, we watched 10 kids die," Bill said.

One oddity is that Kuell's blood type switched from O-positive to B-negative.

"He's in better shape than before the transplant," Bill said. "He used to take tennis more seriously. Now, it's fun for him."

Today Jack is starting out on his trip through the South with Aunt Jen, Uncle Dan, Hannah and a friend of Hannah's. On the first leg they'll be heading from St. Louis to Memphis. Jack's final destination is Nashville, and I think Jen, Dan, Hannah and her friend are going to keep going all the way to Atlanta before heading back to St. Louis.

Along the way they are visiting important civil rights history sights, like Montgomery, Alabama, where Rosa Parks didn't move to the back of the bus she was riding, and the Edmund Pettus Bridge in Selma, Alabama, where black people who were marching for their civil rights were attacked by police.



There is a new thing called My Maps on Google which I will use to show you their progress.

This is the book we finally made for Mom. Her birthday is on Wednesday. She leaves for China on the next Thursday. Hopefully this will make the trip a little easier.

Last night we were looking for some runs. Tonight we'll be looking for the Afikomen. This is our third straight Passover in St. Louis. We never visited when you were alive. We were doing too much traveling to hospitals and I think we were scared to be away from our home base.











The last time we were here was for the World Series. So it was nice to go to Opening Day with Hannah and Aunt Jen. Uncle Dan had to be at a dinner for his work.

The sad part was the Cardinals lost. But that's okay. We got to see the Budwesier Clydesdales, Bob Gibson, Lou Brock and Stan "The Man" Musial. And Jack and Joe and Hannah all got World Series hats that they were giving to kids. I remember getting "flip down" sunglasses as a giveaway at a Senator's game at RFK stadium when I was a kid. I used to think I was a big league outfielder when I was catching tennis balls we threw up high to ourselves in the cul de sac on Singleton Drive.

Joe took the opportunity on the last night before Passover to knock back almost all of the baseball food groups - peanuts, hot dogs, Cracker Jack and cotton candy. He passed over the beer, so I took care of that.

Here is some Cracker Jack information that I came across when I was looking for something online.

Enough Cracker Jack has been sold that if laid end-to-end it would circle the Earth more than 69 times.

-Cracker Jack is the world's largest user of toys.

-More than 23 billion toys have been given out since 1912.

-Some old Cracker Jack prizes are valued at more than $7,000.

-A complete series of the 1915 baseball cards, original and in near mint condition, has been valued as high as $60,000.

-The two men, Jack Norworth and Albert Von Tilzer, who wrote the song "Take Me Out to the Ball Game" in 1908, would not see a baseball game until years after they had composed their "baseball anthem." Norworth saw his first game in 1940 when the Brooklyn Dodgers honored him at Ebbets Field. Von Tilzer did not see his first game for more than 20 years after the song came out."

-Cracker Jack," prior to being associated with the caramel coated popcorn and peanuts treat, was slang for something considered really great. Much the way people today use the word, "awesome," people then used the word "crackerjack."

-During the Depression, the company that made Cracker Jack introduced many new products, although most of them enjoyed only a short period of popularity. New treats included Cracker Jack Cocoanut Corn Brittle and chocolate-covered Cracker Jack.

-From 1941 to 1945, Cracker Jack became a national hero by supplying emergency field rations for the Allies during World War II. In fact, the company received three awards from the Army and Navy, including one for "high achievement in the production of materials needed by our armed forces."