Sunday, November 30, 2003
This is from the day after Mom's reunion. Everyone met at Candy Cane city with their kids. I know Mom was sad that she went kidless.
There was an amazing website for the Bethesda Chevy Chase High School Class of 1983 reunion. Everyone was able to read what everyone had been doing for the last 20 years. Mom's page talked about you. The people in her class were really nice and told Mom they were sorry about what happened, and sorry they never got to know you.
Saturday, November 29, 2003
Thanksgiving made me think about your first Thanksgiving, when you were one month old. We all went out to Annapolis to be with Nana and Papa Sy. There was no Jack and there was no Joe, just you. Nana and Papa Sy sold that house and moved out to St. Michaels when you were maybe 2 years old. This house in St. Michaels seems like home now. There are a lot of good Henry memories out here. I wish I had been doing what I am doing now, taking lots of pictures and writing everything down, when you were alive.
Joe and I drove into town in the morning to get Mom some mushrooms. Mom wanted one pound. I didn't know how many ounces are in a pound so I ended up buying close to 3 pounds of mushrooms. I guess that is why it is important to pay attention in school. When we drove back there were a few people out taking walks. Everyone waves to you when you pass by. That is nice. What else is nice is that cell phones don't work out here. It is very quiet except for the sound of the water and the occasional shotgun barrage, which sounds like popcorn popping in the distance. There were new signs on the doors all over Minneapolis that said "Please do not bring in your guns." I don't know what that is all about. Papa Sy didn't get a goose this morning even though he had "non toxic" shotgun shells. I thought that was kinda funny.
When he came back we went out to bag us a cow. There are some beautiful cows -- they are called Scottish Highlanders and look like big shaggy dogs with horns -- that now live up the street.
Joe was probably the most excited. We all cracked up when the big bull turned his tushy toward us and pooped. Joe learned a new expression, "Poopy Cow."
From big bulls to little bugs, Joe is having a great time. We found a praying mantis and put it up in the tree. Joe sat in the tree and put his nose right up close to the praying mantis, just studying it. It was just like when we were at the zoo and he would not leave the hippos. "Big."
In the afternoon Jack wanted to take out the rowboat. I had never been in it before. We rowed all the way across the cove and back. Jack wanted to row and it was a little hard so I helped him. One day he'll be taking the Tashmoo out all by himself.
Jack had a homework assignment. He had to list the things for which he is thankful. Jack said he is thankful for:
Later in the day we took a drive to Tighlman Island. It got beat up by the hurricane. Joe slept as we drove over to Uncle Peter's new house. They aren't here this weekend. I hear they have real pool inside this house. You and Jack used to think their bathtub in New Jersey was a pool. Baths there were so great because we could all fit.
There were 10 deer on the driveway as we came up to the house. I am sorry Joe was asleep and missed them. He would have been very excited.
Before dinner was ready I sat at my usual spot in front of the fireplace and looked at photo albums that Nana has on her coffee table. I thought I had looked through them before but all of the pictures seemed new to me. Finally we were all ready to sit down for dinner and I lost it. Thinking of you, seeing your face I just fell apart and wept.
Wednesday, November 26, 2003
We are in St. Michaels. Joe cried the whole way. I think parents should carry ear plugs to wear sometimes. Joe was tired but wouldn't fall asleep.
The headaches we all had when we got here are gone.
It feels good to be out in the country. Papa Sy is going goose hunting in the morning. Mom asked me if I wanted to go. I told her that I have no quarrel with the geese, though they do poop all over the place.
Joe is going to sleep on the bottom bunk of the bunk bed. He is getting all grown up.
There are a lot of good photos of you out here that I want to borrow and scan.
I love you pumpkin pie.
Tuesday, November 25, 2003
Here is some good news for a change.
I get emails telling me that there are stories about Fanconi anemia in newspapers. This is left over from when you were alive and I wanted to know everything I could about your disease so we could beat it.
I like reading nice things like this. I hope Anthony's transplant goes well.
Transplant donor found for Clovis boy
Tuesday, November 25, 2003
A 5-year-old Clovis boy who needs a bone-marrow transplant is one step closer to having the procedure.
The parents of Anthony Arroyo heard Friday that a transplant donor had been located.
"It's a six out of six -- perfect match," said Anthony's father, Ronald Arroyo.
Marrow donors must share six molecular markers, or antigens, with the patient for a perfect match.
Anthony has Fanconi anemia, a genetic disorder that attacks the bone marrow. Doctors told the Arroyos in May that Anthony would need a transplant within three to six months.
The Arroyos got the good news just hours before a bone-marrow donor registration drive on Saturday in Fresno. No one in the Arroyo family was a perfect match, and because Anthony is Hispanic, the Arroyos knew it could be a challenge finding an unrelated donor. Minorities are under-represented on the National Marrow Donor Program registry.
A total of 229 people participated in the bone-marrow donor registration, Ronald Arroyo said. "We have our [donor], but we wanted to do it anyway to help other people. Hopefully, somebody else will find a match."
The Arroyos are waiting for the donor to meet with officials at Lucille Packard Children's Hospital in Palo Alto, where the transplant will take place.
Date: 22 Nov 2003 23:24:31 -0000
From: firstname.lastname@example.org Add To Address Book
Subject: [fanconi] Digest Number 981
Information provided in these emails about medications, treatments or products should not be construed as medical instruction or scientific endorsement. Always consult your physician before taking any action based on this information.
There is 1 message in this issue.
Topics in this digest:
1. National Marrow Donor Awareness Month
From: "Allen Goldberg"
Date: Sat, 22 Nov 2003 22:26:27 -0000
From: "Allen Goldberg"
Subject: National Marrow Donor Awareness Month
As you may know, November is National Marrow Donor Awareness Month. I was fortunate enough to be able to produce some Public Service Announcements through my work to encourage people to sign up for the Registry. If you go to http://www.marrowpsa.org you will find these PSAs. If you have time, email the http://www.marrowpsa.org URL to the General Managers of your local radio stations and ask them to play the PSAs. You can find contact information easily for most radio stations online on their websites. If you don't know their URL you can Google them or search through Yahoo.
The Quincy Jones PSAs are good year-round and they are targeted at signing up black and African American donors. The NASCAR PSAs are for Marrow Awareness Month.
Donor search filled with hope
Bone-marrow drive today seeks to find a match for a Fresno boy.
By Barbara Anderson
The Fresno Bee
(Published Saturday, November 22, 2003, 5:49 AM)
Anthony Arroyo, 5, rocks back and forth on black cowboy boots, the heels landing perilously close to his younger sister Annalyza's bare toes. Juanita Arroyo admonishes her son to be careful, and Anthony scoots off to watch cartoons, with 3-year-old Annalyza running after him.
Anthony is never in one place longer than a minute, which is why his parents didn't expect what doctors told them in May: Anthony would need a bone-marrow transplant within three to six months.
Juanita and Ronald Arroyo of Clovis knew Anthony would someday need a transplant, but they had hoped their son would remain healthy longer. Anthony has Fanconi anemia, a genetic disorder that attacks the bone marrow.
Because Anthony is Hispanic, the Arroyos know it will be harder to find a non-relative donor. Minorities are underrepresented on the National Marrow Donor Program registry.
Anthony almost certainly will need a Hispanic donor. Marrow donors must share six molecular markers, or antigens, with the patient to be a perfect match.
The Arroyos' relatives and friends are holding a bone-marrow donor registration drive today at a Fresno elementary school, hoping to find a suitable match for the boy.
Doctors diagnosed Anthony two years ago. They suspected the boy had the rare disorder because of his thumbs: small, spongelike appendages, about the size of almonds. Birth defects, including small or absent thumbs, are tip-offs to the condition.
Children with Fanconi anemia are at risk for leukemia and other cancers. They often show signs of the disorder -- fatigue, frequent infections -- between the ages of 3 and 12.
But the only clue that Anthony's bone marrow was failing: monthly blood tests that showed a steady decline in the production of healthy blood cells. Marrow produces red and white blood cells, platelets and other blood products.
A bone-marrow biopsy in May confirmed the Arroyos' worst fears. Anthony's bone marrow was shutting down.
A bone-marrow transplant is the only option, Juanita Arroyo says.
The Arroyos are ready. They just need a donor.
They have visited Lucille Packard Children's Hospital in Palo Alto, where the transplant will be done. They took Anthony out of kindergarten at Our Lady of Perpetual Help school in Clovis so he would not be exposed to viruses and be too sick for a transplant.
Ronald Arroyo, a supervisor at Lyons Magnus, is ready to spend three to four months with his son at the hospital and while he recovers. Juanita Arroyo, a state employee, also will be by Anthony's side.
The concern is that a perfect bone-marrow match will be elusive.
No one in Anthony's family is a suitable genetic match.
But one of Anthony's uncles, Mike Torres, learned this week he could be a match for a 2-year-old Sacramento boy with leukemia who needs a bone-marrow transplant.
And a family friend, Rhonda Capriolgio of Fresno, was a perfect match for a 31-year-old man with leukemia. She donated bone marrow in July.
Torres and Capriolgio say they would not have been in the bone-marrow registry except for Anthony's need of a transplant.
"I'm glad I'm a match for somebody," Torres says. "We had hoped it would be Anthony, being he's my nephew, but there are other people out there in the same situation as my sister and her family."
Capriolgio, who is Hispanic, says she would donate marrow again. "It's definitely an emotional commitment, but you feel good about it afterward and it's worthwhile."
The Arroyos say they want Hispanics to be tested for the registry, but they wish people of all races to join the bone-marrow donor drive. Fanconi anemia can occur in any racial or ethnic group.
The Arroyos continue to hope someone already in the registry will be a match. A search of the registry began last month.
Two years ago, the Arroyos' family and friends hosted a bone-marrow drive that drew 369 people. The idea was to have someone in the registry should Anthony need a transplant. But there was no guarantee that a match would be found from this group of potential donors.
The Arroyos considered trying umbilical-cord blood for a bone-marrow transplant. The couple tried test-tube technology last year to genetically select a healthy embryo with a bone-marrow match for Anthony. But Juanita did not become pregnant.
Juanita was seven months pregnant with Annalyza when Anthony's condition was diagnosed. Annalyza is healthy, but not a genetic donor match for her brother.
The focus now is on finding a bone-marrow donor and keeping Anthony healthy for a transplant.
"You could never get ready for something like this," Juanita Arroyo says. "But we know we have no options."
The reporter can be reached at email@example.com or 441-6310.
I get sad at the same place every time I drive to work. U Street somewhere between 12th and 11th Streets. Sometimes I look around to see if there is anything that I see that makes me think of you. I haven't found anything. I wonder why that happens.
Tonight is Aunt Abby's 40th birthday party. I am psyched for her. She definitely does not look or act like she is 40. She seems much younger, like Mom. I am not feeling much like a party right now, though. Maybe it is because I remember where I was on my 40th. Sitting shiva for you. I'll snap out of it for Aunt Abby and for Mommy, and we'll have a good time.
On Friday there is another party. This one is for Mommy. It is her 20th high school reunion. That means all of the people who went to school with Mommy 20 years ago will get together and talk about what they have been doing all this time. Everyone looks at everyone else to see if they still look like they did when they were in school. It is all very silly grown up nonsense. People that Mom hasn't seen in forever tell her she hasn't changed one bit.
I think it will be fun for Mom to see all of her friends from so long ago. At the same time I am a little worried for Mommy because she is going to get asked all night about her family. She might get sad telling our story so many times, but I don't know. When you get past the whole "death" thing, it does feel good to be able to tell people about what a great kid you are/were, and of course it is great to be able to brag about Jack and Joe.
I'll take pictures and report back to you.
Sunday, November 23, 2003
When I was driving home on Friday night the weirdest thing happened. I was thinking about something I wanted to tell you and for a split second I thought about calling you at home. It was like I forgot you were dead.
Pop Pop Teddy came over for Shabbat dinner that night. At one point Mom called Joe, "Joseph." It made me think of Joseph and the Amazing Technicolor Dreamcoat and that made me think of you. I loved the way you always wanted to hear the part near the end where Joseph reveals himself to his brothers. I would fast forward the CD to Track 13, I think it was. You knew how to do it yourself.
When I wrote you the other night about how a lot of Disney movies have someone die, I had forgotten one of the reasons why. I read in a magazine this week a story about how after Walt Disney made Snow White and the Seven Dwarfs he built his mom and dad a brand new house. That was a really nice thing to do. The sad part is that there was a problem with the furnace (that is the thing that makes houses warm) and his mom died. People think that he was so sad about his mom dying that he made movies with children being separated from parents, like Dumbo. I made the mistake of playing Dumbo for you guys when Mom was up in New York doing IVF. Jack loved Dumbo but it would make him terribly sad. I think that the song "When I See and Elephant Fly" is one of the greatest songs ever.
Cartoon Network is having an Iron Giant marathon this weekend. They are playing it twelve times in a row which is fine by me. "Rock." "Tree." "Soopermaan."
On Saturday we went down to the Mall for a Walk-a-thon to Help the Homeless which Mommy's work puts together every year. We were in Minnesota last year and couldn't go.
This year we went and Pop Pop Teddy came with us. It was very warm out and thousands of people walked. We went kinda slow because Joe wanted to walk and he walks as fast as a really slow turtle, and Jack didn't want to walk, which slowed him down to as fast as a really slow turtle. It didn't matter because it was so beautiful and we got to walk by all of the monuments.
At the very end we ran into friends and then we went to Cactus Cantina for lunch. It was a close to perfect day.
Today we took Joe to see The Wiggles. Joe fell asleep in the car and we waited outside for him to get a least a half-an-hour sleep before we woke him up and took him in. He was kinda grumpy but after a while he got into it. He finally started dancing toward the end.
I think he had fun. I bet you don't remember when we went to Disney on Ice and Jack freaked out.
I miss you. We're getting close to the day you died.
Wednesday, November 19, 2003
I jinxed Jack and me. Remember how I said I hadn't signed anyone out of school all year. That changed today. I had just dropped Jack and David off at school and gotten to work when Mom called me. The school called her to say Jack has the chicken pox and we had to come get him. I went back and there he was looking very sad sitting at the front desk waiting for me. I took the clipboard for "Signing out Students" and started to write "H-e" when I stopped and realized I was writing your name. I scratched that out and wrote, "Jack Goldberg." Jack said that he was very bummed to miss Hebrew today. He did not want to leave. Wow, that is so cool.
Jack and I drove over to the doctor's office. The doctor counted 40 bumps on Jack. He isn't too sure that it is chicken pox. Jack had the vaccine and then he had what we thought were the chicken pox 2 years ago when Mom was about to have Joe and you were immune compromised. That was the time that you had to rush over to the hospital with Mom to get V-Zig to protect you. Jack and I lived in the basement for a week so he wouldn't infect you. The incubation period was so long and Mom and I were incredibly worried that you were going to get sick.
The only way for the doctor to know for sure that Jack has chicken pox this time is to do a blood test. You know how Jack is about needles, so that ain't gonna happen. So whatever it is, Jack will stay home the rest of the week and go back to school on Monday. I hope he won't be too bored. He has his Lego, Pokemon cards, Game Boy and some new movies to watch, "Holes" and "Sinbad." Joe will be excited to have Jack around.
I have to go back to the office. It is raining out.
Tuesday, November 18, 2003
I was looking for a picture of the Batman cape and mask the kid I saw was wearing and I found this. I think it is pretty funny. I hope you do too.
When I was a little kid, probably your age, I once put feet pajamas on our dog Dizzy. Dogs shouldn't really wear pajamas. You want to know why. Because Dizzy went outside to pee and he peed all over the pajama bottoms. They were my pajamas. Aunt Jen thought it was the funniest thing ever.
I miss your laugh.
Here is the brochure that we created to let people know about the Hope for Henry Foundation. Hannah designed it. That is fitting since she designed your birth announcement. I wish you weren't a brochure.
Hannah has been so good to us. You remember that she designed the Hannukah stamp. That is something happy to look at.
Hannukah is around the corner. I think we'll take Jack and Joe over to Georgetown and bring the kids Hannukah and Christmas presents. Do you remember how whenever anyone came to wish you a Merry Christmas or give you a Christmas present in the hospital you and Jack would thank them and explain that you are Jewish. We used to giggle about the funny way you'd say, "We don't celebrate Christmas; we're Jewish." You were a nut.
Monday, November 17, 2003
We had a parent-teacher conference with Mrs. Singer and Jack's other teachers this morning. They all said he is super-duper smart and enthusiastic. It was so good to hear. I am proud of Jack. It is hard to have your brother die and go on being a normal, good kid. Jack is doing it.
This is something Mrs. Singer gave us to show how Jack's writing has improved since the beginning of school.
He doesn't write his name on everything like you did.`Meanwhile, Jack's Judaics teacher said that he really likes this prayer.
It is the prayer you say when you get up in the morning thanking God for giving you back your soul all fresh for the new day. It also means something about the concept of God bringing the righteous people of all generations back to life. That is some heavy duty stuff. I like the tune I once learned for this, but never really focused on what it is saying. Now I know.
You guys are lucky that you don't ever have to go to Hebrew school. I never liked going when I was a kid. A lot of the stuff that Jack's teachers said about Jack reminded me of me when I was in school. I think we are a lot alike, but he is definitely smarter and can do harder Legos. We got him the Orient Express for 8 year olds and he did it all by himself without getting frustrated.
You'd be proud of Jack too.
When we were in Minneapolis, Joe and Jack were in St. Michaels with Nana and Papa Sy. Nana said that Joe try to strip off his clothes. It sounded so much like you, nature boy. You know that Joe loves animals the way you loved superheroes. Joe loves to watch Animal Planet and Stanley. Did you know Stanley's best friend Lester is Jewish. His full name is Lester Goldberg. He has a pretty square head. I guess he is like Billy who is Roly Poly Olly's square headed friend.
Well at least I think Lester is Jewish. You never know these days.
I bought Jack the Stanley book about sharks, "Shark Mad Stanley," when we first got to Minnesota for your transplant. This was way before they had a television show. I saw it at that store Mom likes, Patina. I just like the way it was drawn and I knew that Jack would like anything with sharks or whales in it.
Maybe Joe will be the Crocodile Hunter when he grows up. I never understand why the crocodile hunter keeps moving the crocodiles at his zoo from one enclosure to another. Joe and I went to the zoo last weekend and he wouldn't let us leave the hippos. We watched them for 20 minutes and Joe just kept saying, "big." Maybe Joe and Jack can have an animal show like the Kratt brothers' show we used to watch on PBS, Kratt's Creatures.
When we were over at the Abramson's house in Minneapolis this weekend, Louie asked me what was your favorite animal. I totally spaced. I asked Mom and she said "horses." How could I have forgotten that?
I took these pictures when we went to a farm. I don't think you ever caught the ducks but you gave them a good run.
I wish I had brought the movie camera with us.