Cal is being inducted into the Baseball Hall of Fame today. His streak of consecutive games ended about a month before you were born. I think that your buddy Jake was born the same day the streak ended or the next day. Jake is going to Bristol, Connecticut this week to represent Washington, DC in the tournament that feeds into the Little League World Series. He had a sleepover last night with Jack and Joe.

Everyone is proud of Jake and his team's accomplishment. It is very exciting. If they win a few games they'll be on ESPN!





And in more baseball news, Barry Bonds is about to break Hank Aaron's all-time home run hitting record. It might happen today which would be a weird thing to happen on the day Cal is inducted. This is the baseball card the Big Michael (Barr) and Hannah gave you when you were born. Mom saw Michael on Friday. He was in Annapolis visiting. He and Hannah and their kids live in Ann Arbor, Michigan. Remember when we all went there and had lunch with Dr. Hughes.



Lastly, A-Rod is about to hit his 500th home run. He must be doing so well because of the pointers you gave him in batting practice at the Metrodome.

Hey Hen. We are down in Florida for vacation. I am sitting in the car next to the Starbucks outside of South Seas Island Resort in Captiva. As I started to type this, I glanced in the rearview mirror and saw this guy, Ted Koppel, who introduced the Nightline story about you that John Donvan did. Everything comes back to you.

He was walking to his car with his son carrying cups of coffee. Jack drinks stuff from Starbucks. I think that is crazy, but Mom says it's fine. I guess it is because I have never had coffee. Mom says that Jack drinks something that is just like hot chocolate.

So I am here looking at my email because we are going to send out an invitation to all our friends for a big Hope for Henry Superhero Party early next month. I am waiting to send that out.



When we were landing in Florida I said to Mom that this is the last place that was a "Henry Place," that we haven't been to since you died. The beach, the Dolphins, the alligators, Ding Darling, manatees, the shelling, you and Jack and me playing pirates, you singing Twinkle Twinkle Little Star over and over again. I am thinking about all of those things that remind me of when we were here with you and Jack. Every time we drive by the stadium in Fort Meyers I say, "that's where Henry met Cal Ripken." I remember how you hit your first golf balls in the driving net they have set up at South Seas. That place was beat up real bad by Hurricane Charlie but now they are rebuilding. We are staying somewhere else this time around.

For Hanukkah I bought video iPod, put every movie we have of you on it and gave it to Mommy. She really liked that. The funny thing is she bought me the same thing for my birthday. She bought it a while ago because she had them write something on it. Of course the first thing I did was put all those same movies of you on mine. I have it here. There are two videos from two different trips we made here all together. So you're here with us, kinda.

I am going to get back to everyone now. Nana and Papa are here, and so are Uncle Andrew, Aunt Tracey, Sam and Emma. It is raining but that is okay 'cause we're all together.

I love you.

Hey, this kid doesn't live too far from us. We definitely know the journey he has ahead. You weighed 33 pounds when you were 7-years-old. I will see what I can do to help with the Cal stuff.





Wednesday August 30, 2006

'Best buddy' must travel a long way to find the path to health
by BOB MAGINNIS

Though he weighs only 32 pounds and looks more like a 5-year-old than the 8-year-old he really is, Devin Fales is one firecracker of a kid.

It wears me out just to watch him scamper happily around the Red Byrd Restaurant in Keedysville as I talk to his parents.

But his father, Curtis Fales, says that every night at bedtime Devin asks him, "What's going to happen to me?"

The short answer: In the next few months, a lot, and none of it pleasant.

Devin has a rare condition called Fanconi anemia (FA). According to Web site of the University of Minnesota Medical School, it is a rare, inherited disease that causes bone marrow failure.

Devin's mother, Crystal Fales, knows all too well what the disease can do. Her sister died at age 10 of complications from the treatment for the disease, she said.

Because both parents must carry the gene, the Fales were unaware before Devin was born that he had it. But when they saw the underdeveloped thumb that is a marker, they had him tested.

Then the family began hunting for a doctor who was an FA expert. That wasn't easy, Curtis Fales said, because there are only 800 documented cases in the U.S.

They found Dr. John Wagner at the University of Minnesota Children's Hospital. Sometime next month, the medical staff there will perform a bone marrow transplant.

It's not an in-and-out procedure, according to a statement sent to me by Janet Ziegler, a clinical social worker at the hospital.

First, the family will travel to Minnesota while Devin undergoes a one- to two-week evaluation. Then will come a week of chemotherapy and radiation, after which the donated bone marrow cells will be transplanted.

Devin will be in the hospital for four to six weeks, but even after his discharge, he will have to remain within 30 minutes of the hospital for three or four months, during which time he may have to be re-admitted, based on how well he heals, Ziegler wrote.

Hospital rules also state that a caregiver must remain with him throughout the treatment process.

Fortunately, Curtis Fales' insurance as a technician with the National Institute of Standards and Technology in Gaithersburg, Md., is expected to cover the transplant's $1.5 million cost.

But the family will have to rent a place in Minnesota while Devin is there and deal with the cost of going back and forth to deal with the sale of their home.

Curtis Fales said they must sell because after his wife was forced to quit her job with the Board of Education to care for Devin, they couldn't pay their home equity. They've had $10,000 in medical bills in the last 12 months, he said.

Curtis Fales he said he hoped the bills would total no more than $50,000, but said there were no guarantees.

Even if money weren't an issue, they'd have to sell, he said, because Devin will have to live in a hypoallergenic house, because he will be susceptible to fungus, mold and other tiny critters for a long time.

The Fales each handle the stress in different ways. Devin's mother is quiet, while his father alternates between quick, nervous bursts of speech and rapt attention when Devin rushes up to the table to ask for a quarter or to report that another friend has shown up.

As Devin sprints off, his father said, "It's killing me. He is my best buddy in the whole world."

His anguish is made worse, he said, because even if Devin does well, FA patients are susceptible to other medical problems for the rest of their lives. Devin is close by when he says this, but the boy shows no signs that its impact registers with him.

He is, from all outward signs, a happy-go-lucky child. That fact was attested to by his friend, Don Shumaker, president of First Hose Company of Boonsboro, where Curtis Fales has been a long-time volunteer firefighter.

The fire company has tried to help, Shumaker said, proudly pointing to his latest project.

The company has purchased a New York City firefighters' helmet emblazoned with No. 8 and Cal Ripken Jr.'s name. Shumaker said the fire company is making arrangements to have Ripken sign it, after which it will be offered on the eBay Internet auction site.

With Ripken certain to be on the Baseball Hall of Fame ballot in 2007, it could be quite a collectible.

If you have healthy children and don't have to spend this winter watching them suffer in a place where the outside temperature can reach 30 below zero, consider helping the Fales family get through the next year.

To do that, you may go to any branch of Hagerstown Trust and contribute to the First Hose of Boonsboro/Devin Fales Benefit Account, No. 155007179.

Please help. Everyone needs a healthy best buddy.

Bob Maginnis is editorial page editor of The Herald-Mail newspapers.

There are a lot of things that have happened so far this year that I haven’t talked about with you. Nothing too important. Just stuff. Here is some of it. I will put some pictures in now and try to fill in the details later. Hopefully I will get back to writing you more regularly. I have scraps of paper piling up all over the place with notes of stuff that I want to tell you.

I guess a good place to start is Jack's birthday. I got him a present that a lot of people wanted but had a hard time getting their hands on during Hannukah and Christmas. It is probably both a good an hard thing having your birthday smack dab in the middle of the holiday season.



You can see how psyched he was.

Also in January, Mom and I went to Las Vegas for my work. We saw Cal again and met Derek Jeter.



Then in February, Mom and I went on vacation with Rich and Helaine. This is a picture of me at the beach where we went in the Carribean.



I took this picture of a catepillar who was crawling up the side of the place we were staying. It was HUGE and very beautiful. Remember the catellipars they have at Politics and Prose. They were neat.



In March, your brothers and I went up to Cooperstown to visit the Baseball Hall of Fame. My friend from work, Lee, has a plane and was nice enough to fly us up there.





There were no Starbucks, GAPs or even malls in Cooperstown which is odd, but really, really nice. They did have a couple of stores that sold baseball bats. Joe and Jack both got ones and they were personalized with their names and they also say "Future Hall of Famer."



Also in March we all went up to New York City for a wedding. For a change of pace we took the train together with Nana and Papa Sy.



The guys had a good time. A woman left her bag on the platform and the train took off without it. That caused a lot of excitment.



We went to the NBA store and the guys got shirts. Joe got Shaq's and I think Jack got Kobe Bryant's. I remember that my friend sent you Kevin Garnett jerseys when you were in transplant. They were a little big. It was appropriate beause KG plays for Minnesota and we were in Minneapolis.

Joe wears your Michael Jordan Wizards jersey all the time.



Mom and I had a good time at the wedding. It was wacky. There was a sword and a dog in the ceremony. It was definitely different than any wedding we will ever go to.

Joe and I went to the slide that you and Jack love so much in Central Park. There were 3 Henry's on the slide with Joe. I guess it is a popular name. Mom and Jack were over at the zoo while we slid. Joe didn't want to use cardboard.





April 4 was Mom’s birthday. As always I had a "grand plan." But unlike last year's Photo Booth, I wasn't able to pull of this year's gift as I had planned. My idea was to make a book of photos to give her. The photos were all of the ones I could find of just you and her. I found almost 70. I scanned them all in but couldn't get the book made just then because of something technical. Basically I screwed up.

So I got her a really nice camera instead. God, I wish we had digital cameras back when you were born.

What I have done is put all those photos of you and her on a electronic picture frame Mom has on her night table so she sees them as a slide show.



Mom got the camera just in time to use it on a trip to... Disney World! We all went to Disney World for my work for the grand opening of a new roller coaster. I do have an amazing job.



After we came back from Florida I went back to Las Vegas for work. This time I did something I never have really done there before. I went outside. And outside in Las Vegas is really cool. There are mountains all around the town.





I hiked up one of the mountains. It was in a place called Red Rocks. I thought about you a lot while I hiked. It was good to be alone. I thought the usual thoughts about how sad I was that you never saw anything as beautiful as Red Rocks, but I also just thought a lot about how much I miss you.

All of us went to St. Louis for Passover, and then Cousin Hannah and Aunt Jen came here to go with us to a rally on the Mall to try and help people in Africa who are getting killed. We met up with other people who came in from St. Louis. A lot of babies and boys and girls are dying in a place called Darfur. I hope Jack and Joe learn about the need to help others in trouble, no matter who they are or where they live.







We also went with Aunt Jen and Hannah to the cemetery. We visited your grave, Grandma's grave, Aunt Ida and Uncle Ben's graves and Mommy's grandparent's graves. We have lots of people to visit.

Hannah did what Mom and I do. She laid down on the grass on top of your grave. I saw a picture in a magazine of a Mom who lost her son in the war in Iraq. She was laying down on top of the grave. A lot of people just stand and look down. I understand the need to lay down and be as close as possible. I remember laying with you in your hospital bed and your bed at home. I miss that.

At night I sit on one end of Jack's bunk bed and read while he is tucked in at the other end reading too. We sit like that until it is time for lights out. Mom is usually in bed with Joe reading to him. I like that time with Jack even though we aren't talking.

Yesterday was Father's Day.

Jack gave me this present. How awesome is your brother.




I was okay until about 11:00 am and then I started to think about you and got really sad. I started to feel like I had no energy to do anything. But it was "my day," and Mommy asked what I wanted to do. I said that I wanted to go to the cemetery.

First we went to Galayan's, which is now called "Dick's." Go figure. We bought rollerblades for Jack and Joe. When we were there we ran into our friend, Obbie, who happens to be Uncle Andy's cousin. Andy and Obbie are first cousins, just like you and Michael.

We left there and went to the cemetery.

The grass was really dry and not comfortable to lay on, but we did anyway. I wish that we could put down some really soft turf. I think will ask the people who operate the cemetery if I can bring in my own grass. There is actually a place out near the cemetery called a "turf farm." I want it to be green and soft on top of your grave.

Joe busied himself playing with all of the little Pokemon and other things that are on your headstone. Jack wasn't particularly pysched to be there, so he went back and sat in the minivan and listened to music.

Mom and I went and saw Grandma and everyone else buried there that we know. I didn't cry this time.

When we got home everyone put on their roller blades and we went around that track where we went for Michael's soccer birthday party. Here is a photo of you, me and Mom from Minnesota. I was thinking a lot about our apartment on Lake Calhoun. It was so nice that we were all together and neither Mom or I were working. It was great being together so much as a family -- even though it was all because of you needing to get new blood.



Today I went to Boston to do something fun for work. I gave a fifth and sixth grade class money to help them with a project they are doing. It is all about good sportmanship. It felt good to be able to do this. I thought about you a lot.


Students get A for effort
Radio service donates $10K to Acton elementary school

By Douglas Belkin, Globe Staff | June 19, 2005

The Yankees and Red Sox never did agree to shake hands, but the good sportsmanship campaign by a group of Acton elementary school students -- which got the country wondering whether the rivals would shake -- is paying dividends just the same.

Washington, D.C.-based XM Satellite Radio will present the Merriam Elementary School with a check for $10,000 tomorrow morning in a case of what ad-types might well call synergy.

The check is a one-time gift the company is giving to the school because the handshake project so closely echoes its advertising campaign, ''Why can't we be friends."

The project drew national attention earlier this year when the school's fifth- and sixth-graders campaigned to get the Red Sox and Yankees to shake hands on opening day in Fenway Park as a show of good sportsmanship. Everybody from Sports Illustrated to Bud Selig, the commissioner of Major League Baseball, weighed in. A spokesman for Yankees owner George Steinbrenner said the boss himself liked the idea. Red Sox manager Terry Francona said he admired the students' initiative -- they started by sending letters to the Sox -- and he'd talk to team captain Jason Varitek about it.

But, ultimately, it was the players' decision and they demurred.

That said, the kids took heart when the Yankees applauded the Red Sox during the world championship ring ceremony at Fenway Park on April 11. Apparently not everyone had read the good sportsmanship memo that morning, however. During the ring ceremony, at the tail end of a moment of silence to honor the recently deceased former Red Sox reliever Dick Radatz, one fan in the stands yelled a vulgar remark aimed at Yankee third baseman Alex Rodriguez.

The remark was followed by a terse ''thank you" by Red Sox announcer and master of ceremonies Joe Castiglione.

The XM Satellite advertising campaign centers around the 1975 song ''Why Can't We Be Friends?" by the group War and plays on the idea that even though fans of different Major League Baseball teams may antagonize each other when they root for their home team, they are all part of a larger community of baseball fans. XM subscribers can listen to almost every baseball game from anywhere in the country.

''We became aware of what the kids were doing around the time we launched the campaign and we thought they complemented each other," said Allen Goldberg, a spokesman for XM. ''So we got in touch with the school and teachers, and even sent them the spot before it aired."

The money is meant to be spent furthering the ideals of the handshake project, said Goldberg, but can be used however the school sees fit.

An oversized check will be awarded at a schoolwide ceremony Monday morning and will be followed by a panel discussion with some local news reporters who covered the story, as well as Bill Maver, Acton-Boxborough High School football coach, and Middlesex District Attorney Martha Coakley.

After the panel discussion, the students will take a bus to Fenway Park, where they will take a tour and meet with Charles Steinberg, the Red Sox vice president in charge of public affairs.

On Tuesday, the students will participate in the ''Ripken Family" baseball radio show, hosted by Cal Ripken and his brother Billy on XM Radio.

''This whole thing has been a wonderful experience," said Ed Kaufman, who organized the effort with fellow teacher Mary Ann Brandt. ''It surpassed what any of us expected."

''I think the kids learned they can make a difference in the world and they can get people talking about something if they show enough passion and sincerity about what they believe in."

I got to talk to the kids at their school and then we went to Fenway Park, which is where the Red Sox play baseball. While I was waiting for the school bus to pull up, I saw two Boston Children's Hopital buses go by. I thought about the time when you were there for heart surgery and Mark took me for a walk up to Fenway.

This is me with all the kids. I am in the middle. This felt great. I am very lucky.



Yesterday at Fenway, they had a special Fathers' Day event. After the baseball game, dads and kids get to go down on the field and play catch. How cool is that.







It is great for the dads and their kids, but hard on the grass. Today they had all these people working on the field to make it nice again. You know I was thinking how great it would be for the cemetery to do the same thing.

I bought Joe a book that I remember liking when I was a kid. It is called "Suppertime" with Snoopy and the Peanuts gang.





I really, really liked it when I was a kid, but honestly I was a little disappointed when it came to reading it to Joe. It wasn't as great as I remember it. Some things are like that. The book is just a bunch of little sayings. I seem to recall there being a Peanuts saying, but it isn't in that book, that "Happiness is a Warm Blanket" or something like that. I think that Love is wanting to share stuff with someone.

Last month I went to this city called Las Vegas. I stayed in a hotel that has lions in the lobby. The lions hang out in a habitat that has glass walls and even a glass floor. You can walk underneath the lions. It was totally cool. I really wanted Joe to be able to see the lions that close. He would have really enjoyed it.

I was lucky enough to spend a little time with Cal Ripken when I was in Las Vegas. I showed him the photos of the two of you and the newspaper article that was written about your visit. I had a lot of trouble not crying when I was telling him about it. I told him how great it was for you to have been able to sit and talk about Pokemon with him. He is a really nice guy. He is doing something with where I work so maybe I'll get to see him again.

Mommy and I went to Uncle Poopy's 40th birthday party. It was kinda like the Cal Ripken thing again. I knew that if I opened my mouth to tell Bill how much he means to me that tears would fall right down my cheeks. So instead I listened to everyone else tell him how special he is and how great it is to know him so long. I sent him powerful brain waves to let him know how I feel. I guess that is kinda funny considering at his wedding I said in my toast that every single day you need to tell the people you love that you love them. It isn't enough to show them you love them you need to tell them, too. I don't know why that is, it just is. Jack said to Mom the other day something like "okay I get it already -- you can stop telling me you love me so much."

Mom's 40th birthday is coming up in another few weeks. I got her the best present. I cannot wait to show you pictures. I hope she like it. I also got her the best Valentine's Day present.



It is just like this one except it is green, like her car. I think she was really surprised. Her life has been so hard - but happy - that I really feel like I need to get her the most extra-special things in the world that make her smile a lot. Remember how you always needed to get a gumball from the one like this at Blockbuster. The one I got Mom takes quarters. I am hoping that will keep Jack and Joe from going gumball crazy.

Mommy had an idea about one of the rooms that is going to be added to the back of our house.



She wants to put an old fashioned candy store in the room and call it Sugar. She is going to make it a really fun place to be. I told her it is a great idea but she needs to take Jack and Joe to the dentist for the rest of their lives. I am not going to do it. I bet when the candy store is finished Mommy will be happy and a little sad. I am sure she would have wanted to share it with you.

Usually at these big birthdays, like someone's 40th, people make speeches or they do movies. I don't think I will be able to say anything at all. It'll be too hard because I'll think of you and I won't be able to talk. I have to look into something I can do that will be nice but doesn't require me to cry.

On Sunday we went to JPDS. They are filming a movie for the school and they wanted Mom and me to talk about you and the school. I just sat there next to Mom and let her talk. She was great. She started to cry a little but I told her she was doing great and should just keep going.

Then on the following day we went to a parent teacher conference at the Gan with Cheryl. She told us that Joe is doing great. She said that he has a very good sense of humor. That is a really good and almost a grown up thing. It made both Mom and me think of you. The two of you are so alike. I asked Mom the other day if she thought Joe would have turned out so much like you if you had lived. I wonder if there would have been room enough under one roof for two cute, funny guys who knew they were cute and funny. Jack is very funny but in a different way. Joe, like you, makes faces and does funny things, while Jack tells jokes.

At one point Cheryl asked us about Joe and you. He talks about you in class and Cheryl just wanted to know what we tell him. Mom explained that we tell Joe that you were his brother but you died. Cheryl said that he is getting near the age when kids are very curious about death. I guess he has a big head start on the other kids in his class.



Mom says what breaks her heart the most is when Joe (often) tells her how he wants you to come to our house to play. The other day Joe asked me if you were still dying. I like that he is aware of you. I am glad that I am doing this so he can read it when he gets older and know you. I wish I had done this while you were alive, though. I was telling someone this weekend that I think it is really interesting that nowadays we can capture so many photos and videos of the people we love and have them to look at after they die. Before, people had only the pictures in their minds, unless they were movie stars. Now if anyone dies we can watch a movie of them everyday if we want.

Mom and I have been working on the Hope for Henry Foundation. Aside from all the great stuff it does, it is just so nice to be able to say your name every day and look at pictures of you. There is a picture of you on all the brochures and other stuff. We even made a website that talks about the Foundation and you, and has a whole bunch of pictures. I know the kids are enjoying the gifts. We ask them afterwards and they tell us great things.



We bought another portable DVD player for us. Funny thing is that I don't have much interest in it. My life used to revolve around the one we bought for you, buying DVDs and keeping it in good running order.

When Mom had her idea about the candy store, I had this idea about putting together a small book about fathers whose kids have died. What made me think of it was reading this book by a doctor who doesn't live too far from here. His name is Gordon Livingstone and two of his sons died. One was older and one was just about your age and died like you, after a bone marrow transplant. The book was very good and I even ordered another one of his books that is just about his sons' death.

I think my book would just feature a page or two for each dad to tell the story of how he was able to live his life after his kid died. Right when someone dies you don't know how or if you want to go on living. But most people do. I think it might be helpful for some people to read about that. It might not be helpful right when your child dies but maybe a few months out. It could be regular dads like me, and some famous ones. That would help sell the book.

I think it is interesting that there are a lot of famous rock and roll stars who have had kids die. Eric Clapton -- he's kinda old now and having another kid --, who I have mentioned to you before, and this guy Robert Plant, who was in a great band, Led Zepplin. You know the Beatles -- Led Zepplin was after them and really good too. One thing I will tell you about at some point is how David and Jeffrey and I got into a little bit of trouble with the Jewish Rock and Roll Hall of Fame. It has come a long way since the meetings that you sat in. Jeffrey and David are so smart and funny that I am sad that we don't get to have those meetings anymore.

Speaking of music, that is another way Joe is a lot like you. Most mornings we drop off Nina, David and Jack at JPDS, and then Joe and I head over to the Gan. It is nice to have this alone time with him. He loves listening to XMKiDs on the radio, and always wants to call up and ask to hear "Piderman" which is this great version of the Spiderman theme by a guy named Michael Buble. You and Jack always listened to the Ramones version. I never had the one from the cartoon. Joe also asks for "Dogs Out," which is "Who Let the Dogs Out." I remember when I bought that for you and Jack in Minnesota. We turned it up loud and had a dance party. Joe also loves Blues Clues. We listen to the CD that I bought for you and Jack. "Things I Love to Do" is my favorite song off there. I have turned Joe onto it too, and he can now sing along.

Another way he reminds me of you is that when we walk into the Gan in the morning he says hello to both of the guards. He is very sociable. He says hello to everyone. We are always there very early so we go down to the Gan space and play catch with the football. Do you remember Natalie, who was in your class. Her brothers, Robbie and Matthew, are there early too and they play catch with us. I love Mom, Jack and my job, but maybe the most fun part of my day is playing with Joe before school. When it is time we walk into the classroom and Joe walks in very close right behind me trying to stay hidden from Cheryl, Jane and Ian, who is the helper like Big D - Dennis was in your class. When he is ready or when he sees someone else playing, Joe comes out from behind me and gets busy with blocks, or trains or animals or whatever the arts and crafts thing for the day is. After a little bit I tell him that I have to go and I get sent off with a huge hug and a smack on the lips. I always feel good after that.