Tuesday, August 31, 2004




When we went outside this morning there were police cars parked all along the street in front of the house. It seems that during the night someone came and put holes in everyone's tires.

That wasn't very smart or very nice. Mom's car had one flat tire and a lot of the cars had two tires that we flat. This was not a good thing to have happen, but something nice did come of it. Mom talked to the policeman writing a report about our car and told him the story of how you almost died. She explained how she called 911 and a police car came and sped you to the hospital. In our minds, the DC police and the doctors and the nurses at Georgetown Hospital were both responsible for saving your life. It happened around this time of the year because I remember that you were in the hospital for ten days, got better and then just like that you started school on the first day with everyone else.

Well when she told him this, he pointed out the policeman who came that morning and carried you out to his cruiser. His name is Officer Craggette. He asked Mom how you were doing and Mom told him you died. He was very sad. Mom was very sad. We never thanked him and his partner. I have felt bad about that. Now that we know who he is, Mom and I are going to write him a letter and make sure that we also send one to his boss at the police station.

The funny thing about this morning is that neither Mom or I were taking our cars to work. Mom walked and I rode my bike. The good thing about riding your bike is that you can see things that you don't normally see when you drive a car.



This is a picture that I took of three deer that were standing right inside the fence of the Vice President's house. I was a little worried about taking pictures of the Vice President's house (someone is going to jail for taking pictures of the Bay Bridge - I'll explain why a little later) so I did it real fast. And to think that I saw it on Calvert Street!

I love you Henry.


Mom and I are going to a dinner in November to celebrate the National Marrow Donor Program's 20,000 transplant. I'm helping out through work. I just checked to make sure it was 20,000 transplants not 20,000 successful transplants. It would be too hard to define success.

Mom found this in her files in the basement the other day when she was doing some cleaning.





Sunday, August 29, 2004


I didn't even have a chance to unpack and it was off to Philadelphia, also for work. It was nice that Mom and the guys came with me on this trip. I don't think you ever went to Philadelphia, but Mom went up there once when you were alive to see a doctor. It is a city that is between Washington and New York.

While I was working on Saturday, Mom and Jack and Joe spent time with Debbie and Aaron and Daniel. They moved up there about a year or two ago.



Today, I got to go with everyone to see the Liberty Bell. It is a wonderful thing to see and to think about. I remember going to Philadelphia on a class trip once. I bought an iron skeleton key that I think was supposed to open Independence Hall.

We are lucky to live in Washington, DC. The other day I rode my bike to Mt. Vernon, which is where George Washington lived. I realized that I have never take Jack there. We need to go. It is important to be a tourist in your own town sometimes.

I rode my bike to Mt. Vernon because I am getting ready for a 100 mile bike ride -- all in one day -- in October. I want to raise money for the Hope for Henry Foundation. I will ask people to sponsor my and pledge money for each mile I ride. I know I'll ride all 100 miles so maybe I'll try to get everyone to pledge a dollar for each mile. I'll put up pictures from the ride. It isn't too far from St. Michaels so we'll stay out there that weekend.



This is my number for the ride.

We are going out to St. Michaels next weekend, which is a holiday, with Susan and Simon and Alex. It will be nice to spend time with them. I know that Simon misses you and his Dad. He's had a tough life.

I am glad to be writing you again. We are back from traveling and I am sitting here with Jack waiting for Sam Shoyer to come over for a sleep-over.

Lots of love.

Friday, August 27, 2004


I went to Los Angeles for work. When I got to my hotel room I opened up my window curtains. I always like them open. I do that at home, too. It make me feel better.

This was the view from my window. Freaky, huh.




Monday, August 23, 2004


The reason I haven't written for a while is because we went on vacation. We went to St. Michaels and then the beach and then St. Michaels.

Something we did this summer that we've never done before is to go to the waterpark. Seems kind of strange to do that when you are at the beach, but it was a blast. There was a big waterslide near where we lived in Minnesota. I always talked to Jack about going there, but I think he was too young and just not into it. He was definitely into the "Anaconda" which was a splishy, splashy, fast, scary ride that we couldn't ride enough.



Of course, we did go to the beach a lot and this was an important year for Jack and for me. Jack finally went in all the way and then some. He became Mr. Body Surfer. I couldn't believe the change from last year when he hardly would get his toes wet to this year when he threw himself in and wouldn't get out. I was probably more excited than him because I have always wanted to boogie board and ride the waves with you guys.







Here is "your Hannah." She and Aunt Jen and Uncle Dan and Papa Teddy all came to the beach with us the second week. Aunt Tracey, Uncle Andrew, Emma, Sam, Nana and Papa Sy came the first. I couldn't be there the first week because I had to work. And why do I work? To buy you guys toys. Remember that is what I always said. I still do.



Joe makes faces like you used to make. The sand is the best - and safest - place for him. He eats it, rolls around in it and has the best time.



One of my absolute favorite pictures of you and me is right in this same spot. You were on my shoulders just like Joe is. I need to find it.





Lisa and Bruce and Evan and Alex came down from New York for their vacation. I hope they liked it. We went out for ice cream every night.



We put together a puzzle when we were at the beach. Mom did the most work and Aunt Jen was really good at it too. Once you put it together it is all over. There is a lesson there somewhere.



At the end of our time at the beach I suggested to Mom that we go to St. Michaels. Honestly, no-one really wanted to go but I felt like I hadn't really had a vacation. I wanted it to last a little longer. It was a good thing. We had a great time. Joe got to play with Aunt Alice and Uncle Peter's dog Zoey; Jack got to swim until he was a big prune; Joe dove off the side of the pool for hours and hours; and Mom and I went for a really long bike ride. We went by a street called "Screamersville." Whaddya think that is all about? I also saw a HUGE frog and a big snake. The frog was the size of a chicken. It was great.



This is Jack showing off his diving. He is a good swimmer, which makes me feel good for 2 reasons. One, is that he is safe and hopefully won't get hurt, and the other is that he can have more fun.











Joe wants to be just like Jack so he jumped/dove off the side of the pool. This was great except he did it 1 million times in a row without stopping. Thank goodness for Nana who was able to hang in there with him over the hours and hours.















Your - and I say "your" because Mom wrote your name on it, just like she wrote Jack's name on his - soccer ball was sitting on the side of the house and I looked at it and got sad thinking about you. You know how much I miss you. We all miss you so much.



Wednesday, August 18, 2004


I had to leave our vacation at the beach to go up to New York for work. Uncle Dan flew me in his plane to Newark airport. We went through the Signature Air terminal.

We went through Signature when we returned to Washington after you died. I thought a lot about that day and that trip. I really didn't fully feel everything that was happening then and that is a good thing.

While I waited for Uncle Dan's plane to be ready I signed up for a contest that helps Give Kids the World. That is such a great place and I do have wonderful memories from our stay there.




Tuesday, August 10, 2004


I found what I had originally written. Here it is. You were still alive.



July 17, 2001

In October my wife, Laurie and I will have our third child. Even though all three were conceived naturally, we have a significant number of embryos in frozen storage on the Upper East Side courtesy of nine in vitro fertilization cycles. As far as we know, ours may well be the largest personal cache of embryos anywhere. As chronicled in the New York Times Sunday Magazine cover story on July 1, we attempted IVF so often because we were trying to have another child who was free of Fanconi anemia (FA), the deadly genetic disease we had passed to our first son, Henry. We were also trying to guarantee a perfectly matched bone marrow donor for the transplant that Henry so desperately needed.

The remarkable science that allows families to identify and implant healthy embryos through IVF is called Pre-implantation Genetic Diagnosis (PGD). PGD is a godsend to parents like my wife and me who are carriers of genetic disease and want to have healthy children while avoiding any prospect of abortion. Naturally, PGD is only available to us now because of past research performed on human embryos.

The science of PGD has been pushed to the point where it can also identify an embryo that would be the best stem cell donor for its sibling. The application of this science is in its early stages but holds tremendous promise for all children suffering from diseases that can be treated with a stem cell transplant, like leukemia. If we had become pregnant with a healthy genetic match though IVF, then our doctors could have painlessly taken stem cells from the baby's umbilical cord at birth to cure his or her older brother's bone marrow failure and save Henry's life. Unfortunately, we were unsuccessful and Henry's deteriorating health forced us to undertake his transplant one year ago using a less desirable unrelated bone marrow donor. Henry is alive today but clinically has suffered so much more - spending a year in and out of the hospital, enduring invasive lung, brain, liver and skin biopsies - than if he had received stem cells from a genetically matched sibling. Although time ran out for us, further research on embryos will improve the success rate for all of the families coming after us hoping to use PGD to have healthy children who are also well-matched stem cell donors for sick siblings. Fortunately, we are in a position to help.

Now that Laurie and I are done baby making, we asked The Center for Reproductive Medicine and Infertility at the New York Presbyterian Hospital - Weill Medical College of Cornell University to send us its "Embryo Disposition Consent" form. The consent form came in the mail today and unlike the other medical related decisions we have had to make over the past five-and-one-half years of Henry's chronic illness, this one did not require much thought. The document details three clear choices, (1) donate our embryos to a married couple trying to have children, (2) thaw and dispose, or (3) donate them for research.

After Henry's transplant we did try one more IVF attempt, a "frozen" cycle, to have the third child we have always wanted. Embryologists at Cornell had to thaw 19 of our healthy embryos just to get three that would thrive enough for transfer. After these 3 were implanted in Laurie's uterus but failed to grow, we knew that the remaining 60 or so embryos still preserved represented a tremendous opportunity to make medical advances, not babies. Embryonic stem cell research improved the science of bone marrow transplantation and is responsible for saving Henry's life. And while stem cells extracted from embryos hold the promise of a cure for Alzheimers, Parkinson's and diabetes, we should not forget that research using embryos is also critical to the treatment of infertility, pregnancy loss, genetic disease and cancer. Today as we check the box with our preference to donate these embryos, so precious not for the lives they might become but for the lives they might save, we are understandably concerned about the current uncertainty over federal support for embryo research.

When their daughter Robin died almost 50 years ago at age three of leukemia, George and Barbara Bush lost the same heartbreaking fight Laurie and I have fought for the past 5 years. If Robin had come into the world today, medical advances partly born out of research conducted on human embryos could potentially save her life. Continued embryo research provides hope where there once was none. Robin's brother, our president, can honor her memory by supporting a federal role in embryo research. He made the case so strongly in his inaugural address; "We must show courage in a time of blessing by confronting problems instead of passing them on to future generations. Where there is suffering, there is duty. Americans in need are not strangers; they are citizens, not problems, but priorities. And all of us are diminished when any are hopeless."

Clearly, in this time of blessing it is critical that President Bush does his duty and provides hope to families suffering from illness and chronic disease by authorizing funding and oversight of embryo research. All Mr. Bush needs to do is to look as far as his own family to see that this is a priority, not a problem.

Monday, August 09, 2004


I read this story and it made me wonder if what the man in the last paragraph is talking about comes from one of the embryos we donated for research. I think it might not be because this sounds like it must be Dr. D'Andrea's work and we gave our embryos to Dr. Hughes and Arleen.



Monday, August 09, 2004 5:59 p.m.
By Steve Holland

WASHINGTON (Reuters) - First lady Laura Bush and Democratic vice presidential nominee John Edwards clashed on Monday over whether President Bush's restrictions on stem cell research should be maintained or lifted.

On the third anniversary of Bush's decision to allow stem cell research only on a limited number of embryonic stem cell lines, the Democratic presidential candidate John Kerry is seeking to use the issue to portray Bush as out of touch with mainstream America.

The Kerry campaign got a boost when Ron Reagan, son of the late ex-President Ronald Reagan, who died of Alzheimer's, appeared at the Democratic convention last month and said stem cell research "may be the greatest medical breakthrough in our lifetime" and could help save the lives of millions of people who suffer from diabetes and Alzheimer's.

Laura Bush told the Pennsylvania Medical Society in Langhorne, Pennsylvania, that Bush's policy "makes it possible for researchers to explore the potential of stem cells, while respecting the ethical and moral implications associated with this research."

She said embryonic stem cell research is "very preliminary right now, and the implication that cures for Alzheimer's are around the corner is just not right."

"And it's really not fair to the people who are watching a loved one suffer with this," she said, noting her father died of Alzheimer's.

Edwards, in a conference call with reporters, vowed that a Kerry administration would reverse Bush's policy and expand stem cell research if elected.

"We have a plan to have groundbreaking stem cell research done that can affect millions of Americans. They are blocking that research," Edwards said.

He said Kerry would increase stem cell research funding from $25 million to $100 million, with the possibility of much more.

Embryonic stem cells, taken from days-old human embryos, have the potential to form any kind of tissue in the body. Researchers hope to learn to use them to create tailor-made transplants to treat Alzheimer's, Parkinson's and other ills.

On Aug. 9, 2001, Bush restricted the use of federal funds for embryonic stem cell research to batches, called cell lines, that existed at that time. He went no further out of ethical concerns over creating embryos that would be then destroyed to harvest the stem cells.

"It's important that we not go down a dangerous, slippery slope where we divorce ethics from science," said White House spokesman Scott McClellan.

A Roman Catholic, Kerry disputed the idea his belief that life begins at conception was incompatible with his support of embryonic stem cell research.

"It is entirely within ethical bounds to do embryonic stem cell research without violating one's beliefs at all about what life is or where it is and what matters," he told reporters at the Grand Canyon in Arizona.

"I think you have to measure it also against the lives you save, against the diseases that you're curing," he said.

A New England Journal of Medicine review said the Bush policy was leading to missed opportunities.

George Q. Daley, a physician at the Children's Hospital and Harvard Medical School in Boston, said he has access to a stem cell line ineligible for federal research grant money because it was produced after Bush's policy announcement.

The line holds promise for making advances against a gene defect known as Fanconi's anemia, "but the President's policy prohibits us from using our federal grants to pursue these avenues."

This news story also made me think about a letter that I wrote to President Bush that appeared in the newspaper. The people at the newspaper asked me to take out some of the stuff I wrote about the President's sister. I am going to look for the original.



July 21, 2001 Saturday

Stem Cell Research and a Parent's Hopes

By Allen Goldberg

In October my wife, Laurie, and I will have our third child. Even though all three were conceived naturally, we have about 60 embryos frozen and in storage, courtesy of nine cycles of in vitro fertilization. As far as we know, ours may well be the largest personal cache of embryos anywhere. As we told The New York Times Magazine for an article that was published July 1, we had attempted in vitro fertilization because we were trying to have a child who was free of Fanconi anemia, the deadly genetic disease we had passed to our first son, Henry. The child also had to have the right combination of leukocyte antigen proteins to be a perfectly matched stem cell donor for Henry. Otherwise, Henry would need to have a bone-marrow transplant from a donor whose marrow was less likely to be accepted by Henry's fragile system -- a transplant that could have endangered his life.

A bone marrow transplant is a type of stem cell transplant. The donor marrow is dripped into the recipient's bloodstream, which takes the marrow's blood-making, or hematopoietic, stem cells through the patient's body to his or her marrow. If all goes well, these healthy cells will enable the body to replace the diseased marrow and will strengthen the patient's immune system.

Such stem cells can also come from umbilical cords and placentas. Our hope was to have a healthy child, unaffected by Fanconi anemia, whose umbilical cord, after birth, might provide the best stem cells -- matched in terms of tissue proteins with Henry, and so able to give him the best chance for a healthy life.

Thanks to recent scientific advances, we were able to test embryos produced by in vitro fertilization of Laurie's eggs and, after finding the best ones, try to bring one of them to term. We hoped to have another child and also be able to save Henry.

The remarkable science that helped us is called pre-implantation genetic diagnosis. P.G.D. is a godsend to parents like my wife and me who are carriers of genetic disease and want to have healthy children while avoiding any prospect of abortion. Naturally, P.G.D. is only available to us now because of past research performed on human embryos. The application of this science is in its early stages but holds tremendous promise for all children suffering from diseases, like leukemia, that can be treated with stem cell transplants.

Our own efforts at having a child who would also be an ideal stem cell donor were unsuccessful, and Henry's deteriorating health forced us to undertake his transplant one year ago using a less desirable bone marrow donor. Henry is alive today, but clinically he has suffered so much more -- a year in and out of the hospital and invasive lung, brain, liver and skin biopsies -- than if he had had a healthy, genetically matched sibling stem cell donor.

Although time ran out for us, further research on embryos will improve the success rate for all of the families coming after us hoping to use P.G.D. to have healthy children who are also well matched stem cell donors for sick siblings. Fortunately, we are in a position to help.

A final effort to have a child from our embryos failed. We asked the Center for Reproductive Medicine and Infertility at the New York Presbyterian Hospital-Weill Medical College of Cornell University to send us its embryo disposition consent form. The document details three clear choices: donate our embryos to a married couple trying to have children; thaw and dispose; or donate them for research.

Stem cells extracted from embryos may hold the promise of cure for Alzheimer's and Parkinson's diseases and diabetes, and research using embryos will continue to help treat infertility and genetic diseases. We checked the box to donate for research.


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