Wednesday, August 30, 2006

Joe was flipping through this costume catalog last night and when he got to this page he said,

"Hey, there's Henry."

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

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.

Tuesday, August 22, 2006

We are back from picking up Jack.

We drove up on Friday to New York, and stayed overnight with Lisa, Bruce, Evan and Alex. The next day we had brunch with some really nice friends of theirs. We made it to Massachusetts on Saturday afternoon. We stayed at a hotel on a lake not far from Palmer, Massachusetts where the camp is, and Joe was loving it. There were ducks and other kids for him to play with. When we were having dinner out on this deck on a beach at the lake, a nice man who came to the restaurant on a boat with his kids was telling us how lucky he is to wake up and go waterskiing barefoot every morning. That sounded nice.

I remembered the place across from our hotel, the old Sturbridge Village, from when Grandma and Papa Teddy and I picked up Aunt Jen at Camp Ramah back in 1973 or 74 when she went there. I called Aunt Jen to tell her where we were. It is too bad that Hannah doesn't go to camp there with Jack.

We arrived at Ramah at 10 am on Sunday and there was a long line of cars waiting to get in. I joked with Mom that she was using all of her self restraint not to jump out of the car and run up to Jack's bunk.

When we finally got up to Jack's bunk he was there ready for us. We didn't need to read his shirt to know what to do. When it was my turn, Jack jumped up into my arms and I got a great long hug. Yummy.

Jack looked great. His hair was long, feet were muddy and his smile was a mile wide. He introduced us to his counselors -- one was from England -- and his bunkmates. When we went into the cabin it was a beautiful thing to behold. It was a glorious mess of boy stuff. Packages of Twizzlers, wet towels and smelly shoes were thrown all over the place.

I was jealous.

Jack said that he got more mail than anyone. Psych. We are really good at overdoing things in this family.

He was already talking about plans for camp for next summer. He wants more of his friends from home to come. Aside from Matthew and Sam, he wants David and Max to go. We'll have to talk to their parents. Oh, you know who was at camp, Eyal from your class at the Gan. I am not sure I spelled that right. It was good to see his parents.

When we were driving from the hotel to the camp we stopped to ask for directions. The man told us to take a left at the blue cow. Blue cow? The blue cow was at an ice cream place called Rondeau's. I remembered Aunt Jen talking about Rondeaus when we were kids.

We went to Rondeaus after we put all of Jack's stuff in the car. All of his buddies and their parents went to get ice cream and make camp last a little bit longer.

Does Mom look happy to see Jack? Everyone got Root Beer floats.

Matthew's family told us they were going to the Basketball Hall of Fame in Springfield, Massachusetts which was really close to Palmer. I thought it was a great place, especially because the whole bottom floor was a basketball court and there were plenty of basketballs for people to shootaround with.

I was lucky enough to get tickets for us to all to go see the Yankees play the Red Sox at Fenway Park in Boston that night. We headed straight to Fenway after the Basketball Hall of Fame. We got there about 3 hours before the game and had a great time. They close off the streets by the ballpark and there are a million people out.

We had dinner at this sports bar, Game On, and got a perfect table right out on the street. I was feeling blessed.

It was fun watching all of the people walk by. The DJ at the bar played great music to get everyone excited for the game. One of the songs they played and that they play at each game at the middle of the eighth inning was/is Sweet Caroline. You know I was thinking of you.

And of course we had to go shopping for Red Sox stuff. The guys got jerseys. I wonder if Washington fans will ever love the Nationals the way that the New England fans love the Red Sox. It will take years and years.

The game started at 8:05 pm and about an hour after it started it began to rain. When you include our rained out trip to Busch Stadium in St. Louis, we have a pretty high rain to ballgame percentage. But luckily, this wasn't a rainout, only a rain delay. The delay lasted about an hour.

By the time they started to play again it was pretty late and Jack was falling asleep. We headed to our hotel, missing David Ortiz's homerun, and everyone fell asleep right away but I stayed up to watch the rest of the game on TV. I fell asleep about 1 am and it was tied 5-5 going into extra innings. I kinda sensed that when I woke up I would see that the Yankees had won. I was right. It was a terrible weekend for the Red Sox. But even though it rained and even though the Red Sox lost, we all had a great time and I still felt blessed.

Next year we are all going to go on the tour of Fenway that I took last summer. Hopefully the Sox will be in town and we will see a win.

The weather cleared up the next morning for our ride back to Washington. Mom and I thought it would be fun to stop at the Mystic Aquarium in Connecticut. We have talked about stopping there for years because they have beluga whales.

There is a beluga swimming just to the left side of everyone in this picture. It was a great stop. I would love to see them in the wild some day.

There were 3 of these whales. They are so peaceful and beautiful. I asked Joe if he thought we can keep one in the pool in St. Michaels.

The remainder of the car ride back was long but fun. We all got along well which isn't easy when you are packed in a small space for such a long time. This might be left over from all of our trips with you to the hospitals in Minnesota and New York and New Jersey.

At one point we were stuck in really bad traffic in New York so we made a movie and interviewed everyone in the car. It was nice to talk about how great it was to see Jack again.

Joe loves to sing Take Me Out to the Ballgame. He sang that for a few hundred miles. Mom gave him her iPod and then he sang along with Weird Al Yankovic songs for a few hundred more. Joe likes to make noise -- it doesn't matter if it is singing or talking or doing play-by-play when he plays Gameboy or just making sounds. Not sure where that comes from.

Jack is just the opposite. If I didn't look in the back seat I wouldn't know he was in the car. He just sits and reads and listens to his iPod.

It was pretty late as we got close so we started cranking tunes, like the music from the movie School of Rock and AC/DC, and signing along... loud. I think everyone was excited about getting home. How cool is it that we all like the same music. I like being able to introduce Jack to songs I think he will like. At one point he asked me why Ted Williams and Jimi Hendrix are similar. I said because they were both great left-handers. He explained that he was thinking about how much better they were than their respective teammates/bandmates. I was impressed.

With you being gone forever, I think Mom, especially, was worried about Jack leaving and him never coming home. She said it was nice to wake up this morning and go downstairs to see everyone laying around on the couch in their PJs. I think we are all okay.

Sunday, August 20, 2006

This is from Taliah's website. She was a pretty girl.

SUNDAY, AUGUST 20, 2006 11:30 AM, CDT


Friday, August 18, 2006

There is a little girl named Taliah who has Fanconi who is not doing too well. She, like you, is 7 and has graft versus host disease. I have been reading what her Grandma has been writing about her condition and it sounds like she might die soon.

There was a story in the newspaper today about people who keep blogs (this thing I am writing) to keep friends and family up-to-date on the condition of someone who is sick. The story told about a Mom who kept a journal about her twin babies who were in the hospital because they were born very early. One of the messages read like one of the babies was going to die, but the next day the Mom wrote how things had improved. Both babies lived. I hope that I read something good about Taliah tomorrow.

We pick up Jack from camp on Sunday. I don't know who is more excited, us or Jack. He wrote home two more times this summer. One time he was pretty homesick, but the last letter he wrote reads like he was doing really well.

Tuesday, August 08, 2006

Mommy's friend Suzie and her family came to visit us in St. Michaels. Nana and Papa Sy are with Uncle Peter on a trip on his new boat.

Eli, Suzie's son, who you played with, is in camp as is his sister Evie. That left Samara, who is 6 years old. She got along really well with Joe.

We went on the ferry, ate at the Crab Claw and spent a lot of time in the pool.

Joe had a really good time. With Jack at camp, Joe is getting a lot of Mommy and Daddy time. I took him to the local high school and we played baseball. We went into a batting cage and I threw fast pitches to him which he had no problem hitting. He is really good at baseball.

He asked if you were a baseball player. Mom said she would show him pictures of you playing. I wish I had taken more movies of you playing. I wish I had done this sooner.

I should take movies of Joe playing baseball. And dancing. He really likes this movie, High School Musical, which is very popular, and he loves to dance around the family room when it is playing.

Last night Mommy told me how happy she was. I thought that was so great to hear. My next thought was how much I missed you. I didn't say that to her, though.