Wednesday, May 30, 2007

I have an old friend named Noah, like the guy with the ark, and he just sent me some pictures from the time we worked together at VarsityBooks. You and Jack were well known by everyone there. I took you to all of the stuff we used to do together, like picnics and go to baseball games.

Here are some of the pictures that Noah sent. Jack looks like he is auditioning for American Idol.

That's you in Tim's arms. I guess you're being a bit camera shy. That's rare. Fortunately.

We are going to see Tim and Catherine's new baby, Alison, this weekend out at St. Michaels.

She is brand-spanking, new, fresh-out-of-the-oven.

Here is you in a less-than-shy moment. Isn't this photo awesome. Look at that Henry smile you've got working. I showed this to Mom, and it made her so happy. It is like a present to get something like this - a picture of you we've never seen.

I am going to get a bunch of tickets for the Nationals next year. They are moving into a brand new stadium. My friend Steve showed me this cool website were you can watch the stadium being built. Steve and I grew up together. We used to play ping pong all the time in our basement. He had a Senators pennant hanging in his room.

Clark Construction: Construction Camera

Joe and I went to a game last weekend. Uncle Andrew, Aunt Tracy, Emma and Sam were at the same game. They moved from their seats and came and sat with us. Hopefully we can go together to games next season at the new ballpark. I will miss RFK. I've seen many great Redskins games there and Senators and Nationals games.

Tuesday, May 29, 2007

One idea I had a little while ago is to compile a photo gallery of Team Henry. I am going to post pictures of your doctors. We just got a newsletter from Georgetown and there were two different pictures of Dr. Shad. I think it is an important part of my Digital Henry project. There are people who are documenting every moment of their lives in real time with digital pictures, websites visited, documents written, you name it. I wish we could have done that while you were alive.

Mom said that her memory is failing her a bit when it comes to you. That scares me more than anything.

We went to a barbeque at the home of an old friend of mine and Uncle Bill. Her name is Ellen and we haven't seen her in about 15 years. She would remind me of things that I had completely forgotten, and I remembered things that she didn't remember. It is good to have other people fill in the blanks from the past.

I had people email me their best Henry stories when you were about to die. Unfortunately, I don't think I still have those.

I haven't written you for a long time. I just keep talking to you in my head and writing these notes on scraps of paper that I have all over the place.

I finally decided it was time to get back to it. Here goes.

We went to St. Michaels this weekend for Memorial Day. It was Papa Sy's 77th birthday.

Andrew and Tracy and your cousins were there. Our friends Hugh and Mary Beth and their family rented a house nearby and spent a lot of time with us. Nice.

We did the usual stuff. Rode bikes, played baseball, saw a lot of animals, went kayaking (just me -- no-one ever wants to go with me -- I am officially "Chopped Liver"), put boats in the water and stuffed ourselves silly.

This snake was on the driveway when we came home from riding our bikes into town. He was "sunning" himself. Joe and Sam and I watched him until he slithered away.

This is a bird that Joe and I found in the batting cage at the local St. Michael's high school. We couldn't hit 'cause we didn't want to hit the bird.

The bird wasn't moving. He didn't seem like he could or that he wanted to fly. I opened up the netting to let him out and he didn't budge. It was then that I realized that the bird was staying inside the batting cage for protection.

I told Nana about the bird and she said she had a friend who "rescues" birds. I went back later on to put the bird in a box to bring to Nana's friend and the bird had died. When Joe was going to bed that night I asked him what the highlight of the day had been. He said, "the bird." I didn't have the heart to tell him what had happened.

This is a really blurry picture of the Vice President's helicopter over Papa Sy's house. I recognized the whirr of the rotors from home. His helicopter is the only thing that can fly over our house in DC and the house in St. Michaels.

The Vice President gave a talk to the soldiers graduating West Point in the morning and by the afternoon he was in St. Michaels. Mom said that he lands at the Inn at Perry Cabin and then drives up to his house. I still want to get the ride from our street in Washington to here in the helicopter. No traffic!

Uncle Andrew and I helped Papa Sy put the Tashmoo in the water. The battery was dead so I had to paddle it to the dock. We got Rulen the Waves in halfway. It is a great adventure helping Papa Sy with all of these boats. We needed a higher tide to carry the sailboat off the trailer. I felt bad leaving Papa Sy without having gotten that boat all the way in.

The pool was freezing but that didn't stop your brothers and your cousins. I was in the Broad Creek a bit and that was fine. A lot of muck and ooze but no jelly fish, so I was happy. Joe looks pretty happy here.

Tonight is Michael's birthday. He is 13. A real teenager or a Jewish man, take your pick. His other grandparents, Arlene and Harvey, are having a pool party at their house tonight. We'll be seeing everyone all over again.

Some of the notes I am keeping are just things that I want to tell you about your brothers. Here goes:

-Every morning I find an entire playground's worth of wood chips in Joe's sneakers. For the life of me I don't know how he walks around like that all day and doesn't seem to notice or complain.

-Jack did incredibly well on his tests in school. He is really smart. I am proud of him. He is way smarter than me. Yesterday he started telling me that he thinks about what happens in different dimensions. I don't even know what other dimensions there are. He explained to me that there are other universes and he thinks about what those other universes are like.

-Joe has decorated his room in pictures of athletes that he has cut out of magazines and books.

-Your brothers, both of 'em, won't wear jeans.

-Joe has the bad habit of admiring his hits in baseball. Mom explains that he is the only player who turns triples into singles because he stands at the plate after he hits the ball to watch how far it goes. He reminds me a bit of Manny Ramirez of the Red Sox.

-Jack is a big fan of comedy. He listens to Steve Martin, Bill Cosby and Monty Python.

-Joe isn't big on learning to swim or ride a bike. This frustrates me a lot but I know it is only a matter of time. Patience. He can't go through life not knowing how to ride a bike, right?

-Both guys and Mom became fans of this show called American Idol. Joe was crushed when his favorite, a guy named Blake, didn't win.

-Jack watches the Simpsons... maybe too much. The Simpsons Movie is coming out soon.

-Joe watches SportsCenter all the time. Our routine is that he comes down for breakfast and we watch the highlights together. He always asks me "Who won," and I try to teach him to read the scores and learn for himself.

-Jack had a ceremony at school where he and his classmates got their own Chumashim. What was interesting for me is that when the whole class was singing I could hear Jack's voice separate from everyone else. I guess that is what being a parent is.

-Joe is obsessed with jigsaw puzzles. He went from ones with a few pieces, to 100 pieces to 200 pieces and I think he is working on a 500 piece one. Mom helps him out, but he is good on his own.

-Jack likes the Red Sox and Joe is a Yankees fan (I am rooting for the Nats and wish they would too)

So I guess what I want to report to you Big Brother, is that your two younger brothers are doing great. Jack needs to be a little nicer to Joe but otherwise, they're cool.

Aside from Mom's trip to China... here are some pictures from that...

...there is other big news that I didn't report. First, Zhenny left us. She wasn't working enough hours, so she needed to go to a family who needed her more often. You were the one who told me to hire Zhenny. I still remember calling her from Minnesota to tell her that we were coming home without you. She had only been working with us for a few weeks at that point. That was hard. We are going to miss her - Joe most of all. They have an incredibly close bond and Joe is so tight with her husband Peter and her son Jeff. Hopefully, Zhenny can come over to babysit from time to time.

The other really, really big news is that Papa Teddy is getting married to his friend Jeri. That is happening in June. I am Best Man. I am really happy for him.

Papa Teddy and Jeri just went to Italy for a visit. Here are some pictures of their trip.

Aunt Abby, Uncle Andy, Cousin Michael, Rachel, Joshua and little Noah are heading to Italy next month. Bill and Cristina went to Italy this weekend for a few days themselves. Seems like the place to be. I told Mom that I'd like to go to Israel after we go to Spain next summer with everyone for the 10th Anniversary of Bill and Cristina's wedding. You and Grandma are the ones who made the original trip who won't be there for the reunion.

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That's a picture of you and me on a boat from that trip.

Hey, we had 3 Israeli girls stay at our house this weekend. They are going into the army soon and before they start their service they travel to the United States for a while. I'm glad we were able to host them. They said to visit when we go to Israel. Maybe we will.

Finding Felipe a donor

May 25, 2007

By JUSTINA WANG Staff Writer

When Nancy Valverde kept watch over her newborn son for three months in the hospital, nurses told her they had expected she’d give him up for adoption.

A 21-year-old undocumented immigrant who already had two toddlers, she now had a baby whose tiny deformed bones twisted his hands inward and revealed a fatal genetic disease. But Valverde shook the thought of adoption vehemently away. She would keep the infant, because of her integrity as a mother and the integrity of her community. “Hispanics take care of each other,” the Aurora woman said firmly.

Now, as doctors say her 16-month-old son, Felipe Aguilera, needs a bone marrow transplant to live, Valverde’s still counting on the kinship of Latinos, who are the most likely matches for her son.

But she’s fighting long odds.

Less than 1 percent of eligible Latinos give blood in the Chicagoland area, according to LifeSource, a local agency that collects blood and registers bone marrow donors. By comparison, about 3 percent of eligible Caucasians donate. The national average of all races nationwide is 5 percent.

Neither Valverde, nor Felipe’s father Salvador Aguilera, nor his 2- and 4-year-old siblings, are bone marrow matches for Felipe. So earlier this month, LifeSource offered a free bone marrow screening in Aurora to help broaden the pool of possibilities.

About 240 people showed up — a relatively large turnout, but a number Valverde worries isn’t big enough to combat the “one in a million chance” of finding a donor. As the family awaits the screening results, LifeSource is running seven more bone marrow drives this Saturday.“

(Felipe’s) fighting a lot, so why wouldn’t we?” Valverde said. “Why would I give up if he’s not giving up? I’m not allowed to.”

But she fears undocumented Latino immigrants won’t show up for the screening because they think it will give away their status.

LifeSource spokesman Tammy Basile said information collected during blood and bone marrow drives is confidential, and citizenship status is never asked. The drives are also staffed with bilingual workers who can help Spanish speakers.

At her mother’s Aurora home Wednesday evening, Valverde nudged a bottle into Felipe’s mouth as he awoke from a quick nap. At 16 months, he weighs 17 pounds, has a tiny splint on his left wrist and tries to bury his head in his mother’s arms.

Valverde talks about his disease in the calm tone of a doctor:Felipe was diagnosed at birth with Fanconi anemia, which makes him easily susceptible to other diseases, leukemia and other cancers. He has had two transfusions when his blood count dropped. His blood count is now in the low 50s. If it falls below 33, he might die.

The child has had seven operations: one to repair a hole in a heart valve, one to implant a feeding tube into his stomach, one to place a tube in his ear, one to fix his left hand and three to place a shunt in his brain to drain excess fluid.

Even if he receives a transplant, he must undergo chemotherapy and radiation, and his body could still reject the bone marrow.

But Valverde doesn’t waver.“You cannot even imagine the amount of faith I have,” she said. “I don’t know how long we have, but I have so much faith right now. I have to.”

© Copyright 2007 Sun-Times News Group

Thursday, May 17, 2007

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.

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This is the Cape Henry Lighthouse.

Cape Henry

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

Wednesday, May 16, 2007

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.

Copyright © 2007, Chicago Tribune