Monday, July 31, 2006
When we were at St. Michaels a week ago I went on a photo safari. Here are some of the things that I found.
I am especially excited that I got a picture of a hummingbird. Mom is pretty sure you are a praying mantis or come visit us as one. We have had a couple of praying mantis babies at our house.I think there is something about beautiful things in nature and feeling close to people who die.
I was watching this movie called Winged Migration on our IMAX-sized TV (which I love and wish you could've seen) tonight and I kept thinking I need to come see you at the cemetery.
Friday, July 28, 2006
Thursday, July 27, 2006
I just wrote to Jack at camp. I want to try to write to him while he is away as much as I write to you.
Here is the letter I sent Jack. I typed it on my computer. I hope that isn't cheating. They have this cool software that makes your own handwriting into a font on the computer. I might invest in that.
They have these great new cartoon superhero stamps and Hank Greenberg stamps. I am going to get some to use on these letters.
Whassup big man? How is camp? Do you like your bunk? Do they use Hebrew words for a lot of stuff?
Have you been giving the waiters in the Chadar Ochel a hard time?
Question: At lunch, what did Obi-Wan say to Luke?
Answer: "Use the forks, Luke."
What foods are you eating? Do they have peanut butter or is that not okay because kids are allergic to it? Do they have you eating scrambled eggs and stuff you don’t normally eat?
Question: What is Tony Hawk's favorite cereal?
Are you loving bug juice? Do they serve bug juice. That is all we drank when I went to camp.
Have you made any new friends? Where are the guys in your bunk from – New York, New Jersey, Massachusetts?
Did you bring your mitt? Are you getting a chance to play baseball? What other sports are there?
Things are pretty much the same here at home. Joe is still squeaking and squealing.
Question: What kind of animal needs oiling?
Answer: A mouse, because it squeaks!
He misses you a lot. He is having a sleepover at Joshua’s tonight. He is really excited.
Mom and I are going out to dinner for pizza with Rich and Jill tonight. It will be weird without both of you there when we come home.
Question: How do you fix a broken pizza?
Answer: Tomato paste!
I had lunch with Hugh today. He said Liam had a blast at camp. They are going to the beach for all of next week. I will miss him.
Question: What did the Pacific Ocean say to the Atlantic Ocean?
Answer: Nothing -- they just waved!
Hey, are you listening to your iPod? Do the other kids have them too?
Question: Where can you find 50 Cent and Eminem?
Answer: In between your sofa's cushions!
Remember that if there is stuff that you aren’t that great at doing (at first), like tetherball (I was awful), ask one of the counselors or an older kid for tips. People like teaching other people what they know. Keep practicing is another way to get good at something.
I love you so much. All the way to Joe’s Uranus and back.
Write when you get a chance.
p.s. Mom told me she sent you a whole bunch of stuff. Is there anything else you need us to send you?
Wednesday, July 26, 2006
Mom just sent me this photo of Jack. I cannot believe we got something this fast. I have one picture of me from each year at camp, and it is one that they took of all of us in our group.
Jack, of course, looks so much cooler at 9 than I was at 12. You and your brothers are just so much cooler than me and Mom.
When Jack was getting ready to leave he spent a lot of time getting rid of all of the songs on his iPod that had bad words. I don't know if it was him or Mom that thought of doing that.
I thought about that movie that you and I kept watching on HBO in the hotel in Minnesota just before you got really sick and had to go back in the hospital. It had all of these bad words and I thought, "who cares."
I am glad you heard all of that "salty language" before you died. Made you a little more grown up. I wonder where "salty language" came to describe bad words. I bet it has something to do with the sea and sailors.
Sailors were supposed to swear a lot. Here is one sailor who doesn't use "salty language."
As you can see, Joe is a "cool" sailor, and here is your dorky father. Same hat 40 years earlier. When I saw that hat, I had to go find these pictures I knew Grandma had of me. I was almost the same age as Joe.
Jack left this morning for sleepaway camp for a whole month. The camp is called Camp Ramah and it is in Palmer, Massachusetts.
Aunt Jen went to Camp Ramah when she was young.
This will be the longest we've ever been apart. Mom has been a little worried about that. Having lost you makes being separated from your brothers hard, though it is hard for any parent.
Jack ... well he was completely psyched to go. He went on an airplane with Matthew and Sam. Mom said that when they got to the airport the boys were jumping up and down they were so excited. She also said that Jack was sharing JuJy Fruits with everyone. I really liked that detail. I wonder when he got them.
I think I was 12 before I went to sleepaway to camp. Jack is 9.
He seems so young. But I guess no matter how old he gets he'll seem too young for stuff.
Tuesday, July 25, 2006
Monday, July 24, 2006
I think I told you about this guy Bob Rinaldi, who found out about Hope for Henry when he was looking to do something to honor his brother, Michael, who was very sick. Bob is the guy who has worked with Mom to have pianos donated to a bunch of hospitals.
Bob's brother died last week. We are going to the funeral tomorrow. Bob and his other brother Chris asked that people donate to the Hope for Henry Foundation in Michael's memory. That is very sweet of them. They've been great to us.
Saturday, July 22, 2006
I wish they could have included a picture of you with this, but it is in part of the newspaper that is very serious. It is very serious but they still have cartoons. Kinda crazy, huh.
There is a picture of you in the paper today, though. There is a magazine called Parade that comes with the newspaper. In it there is a photo of Jack holding a photo of you. There is a picture of Mom and me, too, and I look like I am sucking on a lemon. Mom said they chose that picture because they wanted one that makes us look sad.
I am really proud of Mom.
By Laurie Strongin
Sunday, July 23, 2006; B02
It was meant to be uplifting: President Bush, surrounded by children who had been "adopted" as embryos, vetoing a bill to permit federally funded human embryonic stem cell research. The children were meant to be props, reminders of the lives his veto would supposedly save. But all I could think about were the children who will be lost because of the politics being played by the White House and on Capitol Hill.
I know, because that's what happened to my son.
On Oct. 25, 1995, I gave birth to my first child, a boy my husband and I named Henry. Two weeks later, doctors determined that he had a rare genetic disease called Fanconi anemia (FA). When Henry was born, there were approximately 1,000 people with FA worldwide, and I didn't know a single one of them. I'd never even heard of the disease. But my husband and I were unknowing carriers of the gene that causes it. And so we passed FA on to Henry along with brown hair, brown eyes and dimples.
Over the next seven years, I learned almost everything about FA, and none of it was good -- especially the impossible-to-accept word associated with it: fatal. Our only hope lay on the frontiers of science, in human embryo and stem cell research. That's where our desperate quest for a cure took us, even as distant policymakers placed emotionally devastating stumbling blocks in our path, obstacles that I believe may well have cost Henry his life.
In almost all cases, FA leads to aplastic anemia, in which the bone marrow does not produce enough red cells, white cells or platelets. This inhibits the body's ability to fight infection, causes spontaneous bleeding and exhaustion and leads to death. The most successful treatment is a stem cell transplant, commonly known as a bone marrow transplant.
In 1995, Fanconi transplant survival rates were dismal. No one with Henry's type of FA had ever survived a transplant unless the donor was a sibling. For Henry to live long enough to reach kindergarten, we would have to have a baby who did not inherit FA and was a perfect stem cell donor for him. With each pregnancy we would have an 18 percent chance of hitting those odds. It was a long shot.
From the moment of Henry's diagnosis, my husband and I believed that if we made every call, pulled every string and pushed love and science to their outer limits, Henry would escape his fate. We searched for someone in the medical world who, like us, was unwilling to accept Henry's death sentence without a fight.
Our search led us to Mark Hughes, then chief of reproductive and prenatal genetics at the National Institutes of Health. He had figured out a way to combine in vitro fertilization with genetic testing before an embryo is implanted. This procedure, preimplantation genetic diagnosis (PGD), involves extracting and testing a single cell from an eight-cell embryo. The results could allow us to know at the moment of conception that our next baby would avoid FA and be an ideal stem cell donor for Henry.
By collecting this healthy baby's umbilical cord blood -- which is typically discarded -- at birth and transplanting the stem cells into Henry, we could save him. Hughes had used PGD to screen embryos for fatal childhood diseases such as cystic fibrosis. But neither he nor anyone else had ever used PGD to save the life of a child already born.
When we began quietly pursuing PGD a decade ago, it was not on the national news or featured in fertility clinic advertisements. It was somewhere between a hope and a dream shared by a small group of doctors and families. But on Jan. 9, 1997, an article in The Washington Post reported that Hughes was violating a two-year-old federal ban on human embryo research with his work on PGD.
Under the ban, Hughes was barred from performing that work as part of his position at NIH. Refusing to abandon his research or the families who were depending on it, he set up a lab as part of an in vitro fertility program at a private hospital across the street in Bethesda. But he was considered in violation of the federal law because his work at the hospital employed NIH research fellows and used NIH equipment -- a refrigerator.
Over the following weeks, the daily headlines all read the same to me: Henry is going to die. As our doctor was forced to resign from his job and faced congressional hearings, Henry's blood counts declined. We searched for alternatives to PGD, but none existed. The politically triggered delay had stolen precious time in our race to save Henry's life. On Dec. 11, 2002, he died in my arms.
There were nearly 100 embryos left over from our PGD attempts. Many had Fanconi anemia. All were precious. After we unsuccessfully attempted to use a number of them to have another baby, it became clear to us that they are not potential life, but lifesavers. So we signed consent forms donating our remaining embryos to be used in research that would provide hope and answers for other couples.
Hospitals are filled with children whose lives depend on medical advances that hold the promise of stalling or even reversing fatal disease. During last week's ceremony in the White House East Room, Bush justified his veto by saying that the bill "would support the taking of innocent human life." But the East Room isn't big enough for all the additional innocent lives that will be lost as a result of his decision.
Laurie Strongin is the founder of the Hope for Henry Foundation.
© 2006 The Washington Post Company