Friday, April 30, 2004
Thursday, April 29, 2004
Joe loves to play hide and seek. The cute thing is that he hides in the same place every single time.
Can you see him?
The other night when Joe was seeking and Mom was counting, Jack came over to me and said, "Joe counted to 6." I said, "that's okay, he doesn't have to count to 10." I went further and said to Jack that everyone doesn't have to play exactly by the "rules" every time. You know how he is such a stickler for doing things the right way (or his way).
Then Jack explained, "No, Dad, that isn't it. Joe normally only knows how to count to 4. This is the first time he was able to count all the way to 6."
Wow, I felt pretty bad and embarrassed. I apologized to Jack a lot.
Remember how I used to hide something in the house and you and Jack would look for it while I would tell you that you were "cold, warm or hot." You guys loved that game. Joe also likes to play, "Blue, Red" which you and I call Twister.
I went to Georgetown this morning and dropped off a huge amount of band-aids. This time I gave them plenty of "chick" band-aids, including Barbie, Hello Kitty and Power Puff Girls. Caryn Pass was nice enough to give us a bunch and we bought some too. There are new Spiderman band-aids. Very cool. Suzanne was there. I was good to see her. She still has your picture up above her desk.
It is a beautiful spring day. There was a speed trap in front of the hospital when I was there this morning. I was wondering what would have happened if they had that set up the day I drove 90 miles an hour to be with you and Mom in the Emergency Room. I definitely would not have stopped. That would have been interesting.
Monday, April 26, 2004
We went to the playground at Cabin John Park after skating. Grandma and Papa Teddy took you and Jack there. I used to go there when I was a little kid. Aside from the cool slides (which we didn't have when I was young) the best thing there has got to be the pig that eats your trash.
I cut this article out of the paper 2 years ago. I read it and thought here is someone to be proud of - Pat Tillman. I am not sure if I read this to you or told you about him. Maybe I cut it out to give it to you later on in life so you could read about someone who lived his life the right way.
He just died in the war in Afghanistan. It is very sad. I am sure that his parents are very sad even though he lived his life as a hero.
Saturday, April 24, 2004
Jack is trying to go a week without watching TV. It is admirable, but personally I think he is nuts. It is like not eating for a week. I think that it would be nice of me not to watch TV to help him out. Don't think I can, though. Maybe he can walk around with a blindfold on or something.
I wonder if we can have a no GameBoy week.
Do you remember the "Daddy Chair." Of course you do. That is the way that I carried you. Your back would be against my chest and I'd make a seat for your butt in my hands and forearms. I carried you that way because any other way was always uncomfortable for you. I haven't thought about the "Daddy Chair" in forever.
Last night I had a strange dream. Where is Joseph when you need him? I think you were near the end of life. We were driving in a car. Papa Sy was at the wheel. There was snow on the ground. We were at an exit ramp from the highway. I got out and moved a big rolled up carpet out of the road. When we got to wherever we were going Aunt Abby gently carried you out of the car. I wrapped my heavy shirt around you so you wouldn't get cold. Then I woke up. I kept trying to fall back asleep so I'd have more time with you.
I am glad that your last trip outside of the hospital was to a toy store. I know you were miserable but I cannot think of a better destination.
Friday, April 23, 2004
I was in the gym after work and all of a sudden I was remembering when we first pulled into Minneapolis for your transplant. It was a beautiful early summer evening when we drove onto the campus of the University of Minnesota. People were all over the place and I couldn't understand why because I knew school was over for the year. I asked a police officer what was going on. Dwight Yoakam was playing at the school that night. I took that for a good omen.
I wonder why that popped into my head?
Tuesday, April 20, 2004
This is about FA. Dr. D'Andrea is a good guy. He came to Aunt Abby's house and spoke to all of our friends when we had our first fundraiser. His sister happened to live down the street.
Link Between Cancer, Birth Defects
Though Not Fully Understood, Connection Is Already Prompting Clinical Trials, Treatment Shifts
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
April 20, 2004; Page D1
In the search for a cure for cancer, researchers have made an intriguing discovery: Many well-known cancers have much in common with rare childhood diseases.
The findings are already prompting new clinical trials testing the same drugs in cancer patients and people born with rare diseases. The hope is that drugs that shrink tumors in people with cancer will also help children with rare diseases. For those children, the drugs could be given early in life, possibly even shortly after birth, potentially eradicating or drastically changing the course of illnesses now considered incurable.
Cancer researchers have long suspected a connection with rare childhood diseases, in part because some of the same processes that are important in the normal development of an embryo go awry when a tumor develops. Only recently, though, have scientists figured out the various pathways on which certain genes sit. That in turn has led to drug trials and new ways of diagnosing and treating diseases.
"If you can understand the genetic basis of these rare childhood diseases," says Alan D'Andrea, a Harvard Medical School professor and chief of the lab of radiation and cancer biology at Dana-Farber Cancer Institute in Boston, "you can learn about cancer in the general population."
In the past few years, researchers have discovered that some of the same genes that cause breast cancer and ovarian cancer in adults are responsible for causing Fanconi anemia in children. Fanconi anemia is a rare genetic disease in which children are born with thumb abnormalities and the blood disorder anemia that eventually leads to bone-marrow failure. Breast cancer and prostate cancer involve mutations at different sites along the same pathway as the genes for neurofibromatosis, a genetic disorder that causes developmental abnormalities in children. And the genes that cause tuberous sclerosis complex, a congenital disease resulting in neurological degeneration in children, sit on a common cancer genetic pathway.
While the early discoveries are tantalizing, the full implications of the research remain unknown. But the research is starting to transform the way doctors care for patients. Instead of grouping together diseases because they share similar sets of symptoms, treatments increasingly are based on the fact that certain diseases share "common disease pathways," says David Franz, founder of the Tuberous Sclerosis Clinic at Cincinnati Children's Hospital Medical Center. He is running a clinical trial in patients with that disease using the drug rapamycin.
At present, only adults who were born with the disease are enrolled in the trial. But if the drug appears to ameliorate or even reverse some of the symptoms, then eventually children could be treated with it "as early as possible" before their organs are destroyed, says John J. Bissler, a doctor involved with the trial at Cincinnati Children's Hospital. This would allow them the possibility of living a normal life. Dana-Farber Cancer Institute in Boston is planning trials using this same drug to treat leukemia patients and people suffering from gastrointestinal stromal tumors.
Ariad Pharmaceuticals Inc. in Cambridge, Mass., developed a drug to shrink cancer tumors. The drug, called AP23573, is now being tested in cancer patients. But it's also being tested to see if it can benefit children with the genetic disease tuberous sclerosis complex. Ariad and the Rothberg Institute for Childhood Diseases are testing the drug on human tissue cells that have the genetic defect associated with tuberous sclerosis complex, which affects one in 6,000 births. Jonathan Rothberg of the Rothberg Institute, which developed the tissue cells, says that by understanding tuberous sclerosis complex better, "we can change the life of a child and also have a chance of winning the war on cancer."
There are also intriguing links emerging between breast cancer and Fanconi anemia after it was determined that BRCA2, one of the best-known genetic markers for breast cancer, is a Fanconi anemia gene too. Fanconi anemia, a rare genetic disease, is often associated with birth defects like thumb and arm abnormalities.
Harvard's Dr. D'Andrea says this discovery has already had diagnostic implications for women with breast cancer. At Dana-Farber, women with breast cancer are now tested for mutations in one of at least seven Fanconi anemia genes that sit in the same pathway as the BRCA2 gene.
When doctors went back to the parents of children with Fanconi anemia and started investigating the health histories of family members, they found that there was often a higher incidence of breast cancer. "Up until that point, doctors would ask if anyone in your family had a history of breast or ovarian cancer to determine possible risk," says Dr. D'Andrea. "But they didn't ask if there were any children in the family with birth defects. We will now have more diagnostic markers for cancer."
For doctors treating children with rare diseases, the connection to something more prevalent like cancer has brought the potential for new attention from drug companies.
Allan Rubenstein, who treats patients with neurofibromatosis, set up a company, NexGenix Pharmaceuticals LLC, to test drugs and compounds useful in treating breast, prostate and other cancers on tissue and animal models with the genetic defect associated with neurofibromatosis. NexGenix's founders include prominent cancer researchers, such as Tyler Jacks, director of the Center for Cancer Research at the Massachusetts Institute of Technology, who made some of the initial discoveries linking the rare childhood disease to a common cancer pathway.
"We're trying to make it clear to the biotech world that they may be looking for a drug to treat breast or lung cancer, but that they would also have a niche in another market that is not small by any means," says Dr. Rubenstein, who estimates that neurofibromatosis affects more than 80,000 Americans.
One of the frustrations of the new research is that it has so far proved to be more helpful to cancer patients than to children born with rare defects. At St. Jude's Research Hospital in Memphis, Tenn., studies of children born missing a protein that repairs DNA damage have led to efforts to try to stimulate the same protein in people who do have it so that their normal cells repair DNA damage better. This may prevent cancer in people who are at higher risk of getting it.
But researchers haven't yet come up with a way to treat children with the disease ataxia-telangiectasia, who end up in wheelchairs because their muscles get progressively weaker. The same is the case for children with Fanconi anemia, where research is making a difference for breast-cancer patients but has not led to a new therapy for the children, many of whom do not reach adulthood. "This has not yet kicked back information in a positive way to these children," says Dr. D'Andrea, "but we keep trying."
Monday, April 19, 2004
Jack has really enjoyed skating. He has Nana and Uncle Peter's skating genes. We've been going to the rink every Saturday morning. Jack wants to graduate to playing hockey.
Joe comes with us to the rink. We still do everything and go everywhere together. I brought your portable DVD player to keep Joe busy. Jack and Joe and I watched movies between Jack's lessons.
A mom who was there said something that I used to hear with you all the time. She said about Jack, "Isn't he the luckiest kid."
Joe wanted some ice time himself. This is one popsicle I chose not to share.
Tuesday, April 13, 2004
In the original Encyclopedia Brown books, the author describes the town where the Brown's live, Idaville, as having "three movie theaters, a Little League, four banks and two delicatessens. It had large houses and small houses, good schools, churches, stores and even an ugly section by the railroad tracks."
In later books the author speaks of "Idaville's wonderful fresh air, its beaches, its three movie theaters and four banks, its churches and synagogues, its Little League and its two delicatessens."
Now I am not as smart as Encyclopedia Brown, but my guess is that they needed someone to eat in those two delicatessens. They went from zero shuls to synagogues plural. The Case of the Mysteriously Appearing Jews.
Just something that struck me.
I love you Henry. I cried thinking about you in synagogue. What are you doing being a plaque. I want my little boy.
Good night sweetie.
Mommy and I went to Yizkor services this morning. All I could think about was who has the job of turning on all of the lights on the plaques that are part of the wall of remembrance. How long does it take. There must be a thousand plus plaques. I still haven't been able to find yours. We got a letter from the synagogue that said someone would help us locate it.
Today was the last day of Passover. Now offically my least favorite holiday. This was a puzzle that was in the "Plague Kit" that all the kids got at the seder at Nana's. Death of the First Born. How could I not love Passover.
Looks like Egypt's first born had chemo or total body irradiation like you.
Monday, April 12, 2004
We've got Joe falling asleep in his bed now instead of ours and then transferring him. That took a lot of effort. What is nice is that we have a little routine. After we turn out the lights he says, "kiss," and we kiss; then he says "hug" and we hug; and he ends it with "squeeze" and we squeeze (which is really just another hug). Dee-licious.
A few nights ago I walked downstairs and found Jack and Joe wrestling. Jack was being appropriately gentle with his little brother. It was great to see.
Jack and his new friend Liam play very physically and wrestle a lot.
They both love a cartoon about wrestling called Mucha Lucha. There is a character on the cartoon named "The Flea." The Flea's farts are his special power. Joe thinks a fart is called a burp. I think Liam gives Jack some of the physical closeness that you two shared.
Sunday, April 11, 2004
We went to St. Michaels this weekend. All of your DC cousins and aunts and uncles were there at some point. Uncle Andy couldn't make it because he was racing his boat in Annapolis. Uncle Andrew was part of his crew.
The snake that we always knew lived in the boat shed decided to come out and show himself. He was sunning himself on the gravel in front of the shed. I showed him to Jack and Joe. Joe was really interested in him and stooped and checked him out for a long time. He stayed out in full view for most of the weekend.
Joshua found another snake down by the dock. I am definitely less freaked out by snakes. I think it is from watching so many episodes of Crocodile Hunter and Jeff Corwin.
We went over to Aunt Alice and Uncle Peter's house. It is not far from Nana and Papa Sy's. There is an old, large black bell bell in the front of the house. You ring it to let everyone know it is time for dinner. Joe got to ring it. It has a great big sound.
Peter took Mommy, Jack, Nana, Papa Sy, Michael and Joshua to Oxford on his new boat. It is a truly beautiful boat and he is very excited about it. Joe and I drove - and went on the ferry - to pick up everyone.
This is a picture that I got off the Internet of the same kind of boat. I couldn't find my camera before I left on Friday. I hope someone will email me some of the pictures they took and I can put them up here. I tried to get Aunt Abby to take a picture of the snake but she understandably was not too psyched to go get a close up.
It is great that everyone is so close to each other now. I know that Nana must be so happy to have her brother living down the street both in Washington and in St. Michaels. It would be nice if Jack and Joe are that close when they get older.
Papa Sy put the Tashmoo in the water. Sam and Uncle Andrew went fishing off of it in the cove but it is still a little early and chilly for fish.
Wait, wasn't "Chilly" the name you gave Dr. Van Burik's fish?
Jack is totally into Encyclopedia Brown. We are reading the stories that you and I read.
You and I started to read Encyclopedia Brown books after I found one in the lounge at Georgetown on the 5th floor.
I went to Georgetown on Friday morning before work to drop off some bandaids for Henry's Toolbox. The "T" sticker was peeling off. Must mean it is getting good use.
Suzanne was there. She said the Barbie bandaids are a big hit. We'll have to get some more. I saw your gastrointerologist. I forget his name. He was there with his two boys because it is spring break. He was a nice guy.
Jack is also into Elvis Presley in a big way. I put together a CD with 28 tracks on it from a bunch of different Elvis CDs. We listened to it tonight before bed. At one point Jack asked about Carl Perkins. He is the guy who wrote Blue Suede Shoes. Jack wanted to know if Carl Perkin's version sounds like Elvis's version. I said it did but Elvis has this something that makes his version special. I tried to see if Jack could hear the different guitar and piano parts of the Elvis songs. Jack enjoys playing the piano a lot. I am so glad he didn't inherit my "can't play any musical instruments" gene.
Did I buy this book for you or for Jack. I don't remember. Maybe for both of you. Jack and I've read all about Elvis and Chuck Berry and Carl Perkins.
This is me with a guy named Chubby Checker. Isn't that a funny name. He sang a song called "The Twist" which is a great dance song.
Tonight to my greater joy, Jack said "Thank you very much," just like Elvis. It was amazing for two reasons. One that he knows that Elvis is well-known for saying, "Thank you very much," and two, for saying it in a southern accent just like the King. I love that Jack is so curious about stuff that I really like. I am trying to find my Elvis movies for Jack to watch. I remember Papa Teddy taking me and Aunt Jen to go see an Elvis movie called "Kid Galahad" at the KB Baronet Theater in Bethesda. The theater isn't here anymore and neither is Elvis, or you for that matter.
I think a lot about you and I think a lot about how I feel about you. Even though I have "let go" I still miss you so much and get very sad. It seemed that I was crying every day or so on the way to work for a few weeks and now I'm not. I was miserable over Passover. The seders are the saddest thing to me. Everyone is together and you're not there. I took my time getting to Nana's house for the second night. It is hard for me to bear.
I think of you a lot and I also think about the places we've been. All of a sudden someplace from our past will pop into my head and then leave just as fast. It might be the waterfront at Lake Harriet in Minnesota or the comic book store in New Jersey, Joker's Child, or room 11 on the 5th floor of Georgetown Hospital. I get transported to all of these places everyday and I don't know what triggers it.
Someone I know from high school and who lives not far from us (you may have met him at Fresh Fields once) off Mass Avenue just lost his little boy. The son was Joe's age. They had a Memorial Service last Friday. I wanted to go but Mom thought it might be too hard. I will write him a note and and let him know that I am here to talk when and if he needs. His office is next to one of my best old friends, Phil.
Phil and Mommy and I went to see John Prine the other night. Phil "turned me on" to John Prine when we worked together almost 20 years ago. John Prine is the guy who sings the "Dear Abby" and "Space Monkey" songs. Remember we used to sing "Aunt Abby" instead of "Dear Abby."
We had Mommy's birthday party last weekend. I think she had a really good time. Nana and Tracey and Cousin Catherine and Aunt Abby and all of Mommy's friends came. Aunt Abby had to leave early and I left as it was starting too. I arranged for food and a cake and a bartender and then amscrayed because I wanted it to be a "girl" party. Jack slept over at his friend Liam's house and I took Joe over to Uncle Bill's. We watched a movie until midnight and then came home.
Joe says his name is Joe "Lion" Goldberg and can tell you that he lives on Calvert Street. One of my favorite things that he says is "WinniePooh" for "Winnie the Pooh." He is very cute. You'll be psyched to know that Joe can fake burp. He sometimes talks in a funny voice. It is a deep growl. I think he may truly believe that he is a lion. Hmm.