Wednesday, January 28, 2004

It has been snowing a lot and Jack has not had school for a few days. Yesterday, Mom went downstairs when she got home from work and she found Jack and David and Jacob Stern on the computer. They excitedly told her that they had "hacked" (where did they learn that word) into eBay and were bidding on a Pokemon card. How crazy is that. They were able to sign in using Mom's login and they were in an auction for a Pokemon card. I was psyched that they figured out how to do this, but a little worried at the same time. We talked to Jack about only bidding with money he has in his piggy bank. Can you see him bidding $500 for some one-of-a-kind card from Japan!

I guess next we'll have to watch out for Joe trying to buy rare and exotic animals off the Internet to complete his zoo. Yikes.

Sunday, January 25, 2004

We went to see Sharon this weekend. She was in from Israel. We went with Sharon to see Dr. Auerbach. It reminded me of the start of everything. We visited Dr. Auerbach at her lab at Rockefeller University. Dr. Auerbach is who figured out you had Fanconi anemia. Sharon, Mom, Dr. Auerbach and I sat around and talked about genetics, Fanconi anemia, cancer and everyone's families.

From Rockefeller you could see Cornell University Hospital. That is where Mom kept trying to have a baby to be your donor. You were a patient there once, too.

Then we went to dinner. It was very nice.

Mom and Sharon bought matching rings. Like Mom, Sharon has written a book about saving Amitai's life. The book is in Hebrew. I'll have to wait for it to be translated into English, or maybe Jack can read it to me.

Amitai is doing great. Alma, like Adam Nash, is a very special kid. What a wonderful thing to have saved your brother or sister's life. They will have an extraordinary bond their entire lives. It will be interesting to know them when they all grow up. I hope Jack gets to know Amitai.

When we got up and went out to breakfast this morning it was cold, very cold. I think the only New Yorkers who are excited about how cold it is are the Penguins at the Central Park Zoo.

I have fond memories of taking you and Jack to watch the penguins and the polar bears and the snow monkeys. We could have sat and watched the penguins forever jumping in and out of the water. The other night I was sitting in bed with Joe trying to get him ready to fall asleep and I thought of showing him some sleeping animals to get him in the mood. We visited the penguins in Central Park online and it was dark so you couldn't see them. I told Joe that they already had "lights out." Penguin Cam, Central Park Zoo

I thought of you every mile from New York to Washington. I thought about the hope we had each time we packed you and Jack in the car and left Cornell Hospital and the Helmsley Tower behind us. I made sure not to head toward Hackensack because that is my natural reflex. I remembered throwing Cheerios from the driver's seat to you and Jack in back on the Jersey Turnpike just like you were the sea lions at the central park zoo getting their fish thrown to them. I took this photo on one of our visits there.

Here are shots of you in the Tisch petting zoo part of the Central Park Zoo.

I could feel you behind me when I passed 695 in Baltimore which took us back and forth from Johns Hopkins 3 days a week. Mom said we did a lot of driving. We did.

It's snowing really hard now at home. Jack is pretty sure there won't be school tomorrow and I think he is right. I missed him and Jack a lot while we were gone.

Friday, January 23, 2004

Thursday, January 22, 2004

Mom and I met with the woman who Jack sees every other week to talk about his feelings. She told us that Jack is doing great and probably doesn't need to see her much longer. That was great to hear. She also explained to us that Jack now needs to know that it is okay to let go of you. Do you remember how I showed you the picture Jack drew of the family and you were in it. This woman told us that it is probably better if Jack drew just the 4 of us, Mom, me, Jack and Joe. She said he is a little confused and needs to know that it is okay to say that he only has one brother, Joe.

Mom and I understood what she was saying but it was hard to hear. We need to stop referring to Jack's room as "Jack and Henry's" room. We need to change the message on the answering machine so it only says, "Laurie, Allen, Jack and Joe aren't here right now." By referring to you in the present tense, by making it seem like you still live with us we confuse Jack. If we talk like you aren't gone, he doesn't know if it is okay for him to consider you gone. Do you remember how I told you he didn't want to let the ballons go on your birthday. It is time.

I miss you, Henry. Mom and I are going to see Sharon this weekend. She is in from Israel. I hope she brings pictures of Amitai. He is growing up. Speaking of growing up, we bought Joe a big boy bed. It is coming next week. I'll let you know how he does. I guess we are all letting go, growing up and moving on. It is "healthy," but it sucks (Grandma hated when I used that word when I was a kid, but it does desrcibe how I feel) all the same.

Here is another new photo of you. You are such a "badass." That means you are a tough guy. That isn't a word I'd use around Jack and Joe but I think it best describes how you went from being in the hospital in Minnesota to playing soccer at Michael's birthday complete with your shaved head from brain surgery and your black Batman shirt. I love the look of determination on your face. You made the jump from hospital bed to soccer field seem so often, so natural, so effortless, so right.

I think that if you knew you were going to die, you would have told us that you, too, would look over Jack and make sure he never got sick. This boy Robert sounds like you, a happy kid. I feel terrible for his parents. On the floor in our bedroom is a framed newspaper story from 1996. There is a picture of you in Mom's lap with me over your shoulder. The headline is "Happy Boy in Sad Situation." I don't know why we framed it. Maybe we thought that when you got older you could look back at the story of your childhood. I don't know what to do with it now. It is just sitting there.

Transplant doesn't save former Craig youth's life

By Andy Smith, Editor

Wednesday, January 21, 2004

Robert Sherman, a one-time Ridgeview Elementary School student who last year became the focus of a local effort to raise funds for a bone marrow transplant, died Friday at Children's Hospital in Cincinnati. He was 10.

Sherman, who was identified as Robert Griggs in a story published last May about his family's fight to save his life, underwent two bone marrow transplants at Children's Hospital, one of the the few facilities performing transplants for Fanconi anemia patients.

Last April, while the boy's family was temporarily living in Craig, he fainted at Ridgeview Elementary. A short time later he was diagnosed with Fanconi anemia, a rare disorder that destroys bone marrow and leaves victims unable to produce new blood. Worldwide, only one to five people per million are afflicted with the disease, according to the Fanconi Anemia Research Fund, based in Eugene, Ore.

The Craig community rallied around the youth, raising $1,078 for the operation. Several businesses donated items that were raffled at $5 per ticket during the Memorial Day weekend. The family left for Cincinnati in June.

At the time, the family's health insurance carrier had been hesitant to cover the cost of the procedure. But the insurance company eventually agreed to cover all medical expenses, the boy's mother, Lillian Sherman, said Tuesday.

Robert received bone marrow infusions from an unrelated matching donor on Nov. 20, and again on Dec. 16, his mother said.

"He rejected both transplants which means the bone marrow didn't grow," Sherman said. "They gave him a regimen of radiation before that, which wiped out the rest of his own marrow, and he was infused with new stem cells."

Despite his fragile health, Robert always maintained a positive outlook, Sherman said.

"Robert loved life -- every single day," Sherman said Tuesday. "He was the happiest child I've ever had the privilege to know."

When the second transplant didn't take and Robert's conditioned worsened due to a fungal infection, he began to prepare for the inevitable. "On Jan. 11 he told me he was going to heaven soon and that he would be an angel and make sure that his brother would never get sick," Sherman said.

Robert is survived by his parents, James and Lillian Sherman, a sister, Kimberly Sherman, his 15-month-old brother Jerret Tespa and his paternal grandmother Coral McConnell of Craig.

He will be buried at the Veterans Memorial Cemetery on Massachussetts' Cape Cod. The family now resides in Massachussetts.

In lieu of flowers, the family requests that donations be made to the Fanconi Anemia Research Fund, 1801 Willamette St., Suite 200, Eugene, OR 97401.

Tuesday, January 20, 2004

Jack brought home a picture he drew in class that shows his family. Mom feared that the little person was you, but Jack explained that the picture shows (from right to left) Joe, Dad, Mom, Jack and Henry. I don't know whose head is floating between the two of you. Maybe Headless Nick. Over New Years, our friend Hugh taught Jack how to draw Power Rangers. He makes them look just like the ones on TV. I'll scan one. You will be impressed.

Jack seems to save all of his innermost thoughts for Mom. Maybe I don't ask him the right questions or maybe he doesn't feel safe opening up to me. Jack told Mom that he didn't think anyone would ever want to change places with him. Why? Because he has a brother who died.

Here is a new photo that I scanned of us.

Check out Mom and Jack right behind us.

Thursday, January 15, 2004

I had to go out to Las Vegas for work. I was gone for a whole week.

Last time I was in Las Vegas Jack was just a baby. I had left Washington very early in the morning and I called Mom from the airport when I got to Las Vegas and asked how things were back home. Mom said they were great except for one thing. When I had gotten Jack ready for bed the previous night I put him in his pajamas and placed him in his crib. Unfortunately I forgot to put a diaper on his cute little butt. Jack and Mom woke up to a bit of a mess. Oops.

When I got back from Vegas this time I knew that Joe would seem older than when I left. He has taken to falling asleep in our bed, the "Big Bed," and he was asleep by the time I got home. I looked at him in our bed and saw you. Joe is wearing your pajamas, the size 6 Patagonia underwear tops and bottoms. I still don't fully understand how at age 2 he fits into the clothes you wore last year when you were 7. We just got a letter telling us Joe got accepted to the Gan. It will be tough living up to being the brother of the charming Mr. Henry and Jack, Jack the Brainiac. I know your teachers will be excited to have him in their classes.

Jack is doing better. He seems less sad now. He is 7; same age as you. He has a new game boy advance that he loves to play with on the trip to school, and we are cruising through his Adventures of Droon books. I told him the other day that I am really looking forward to knowing him as a grown up. I am in no rush for that to happen, though.

I have an image stuck in my head. You are a balloon. I have been holding the string in my hand for the last year since you died. You, the balloon, hovered just above me out of reach, but always with me. When I was in Las Vegas I realized that I've let go of the string or it just slipped from my grasp. You're gone, and I'm okay. I am sure it is noticeable that I have been writing to you less and less. All this coincided with the one year anniversary of you dying. It is strange that the changes in my feelings and my grief are so in synch with the calendar.

You're gone.

Please know that I love you always.

Thursday, January 08, 2004

Custom Kids? Genetic Testing of Embryos

January 8, 2004
Renaissance Washington Hotel
Washington, DC

View session (streaming media file)
View panelist biographies (PDF)

Henry's Story Illustrates Ethical Problems of Genetic Test

By Laura Pack -- Scripps Howard Foundation Wire

WASHINGTON - Laurie Strongin tried preimplantation genetic diagnosis nine times to save Henry. And she would have tried nine more if her first-born son had lived a little longer.

Strongin, a senior manager at the Fannie Mae Foundation, and her husband Allen Goldberg, used the technique in an attempt to produce a sibling for Henry who would have been a genetic match and a potential bone marrow donor.

“We simply ran out of time,” said Strongin, a Washington resident, as she fought to keep her composure. Henry died at age 7 on Dec. 11, 2002, after complications associated with a bone marrow transplant from an anonymous donor.

Strongin recounted a brief chronicle of her family’s struggle to save Henry’s life Thursday at a forum hosted by the Johns Hopkins Genetics and Public Policy Center. The center convened a diverse panel to discuss the ethical, social, political and scientific implications of PGD.

Henry was born with Fanconi anemia, a genetic disease that his parents had never heard about. Bone marrow transplants can help patients, but they are not necessarily cures.

FA is a recessive disorder that leads to bone marrow failure: if both parents carry a defect in the same FA gene, each of their children has a 25 percent chance of inheriting the defective gene from each parent. A child who inherits the gene from both parents gets the disease.

In PGD embryos developed outside the womb are tested for genetic abnormalities that cause serious disease before being transferred to a woman’s uterus, according to a report released by the center.

Like the Strongins, some families are choosing PGD to try to improve the quality of life for existing children or to avoid genetic diseases in babies. Other families are turning to this technology to choose the sex of their baby. Although it’s not possible now, soon PGD may make customizing traits a reality.

“Potential abuses should not prevent the thoughtful use of this technology,” Strongin said. “PGD should be allowed for life-saving technology.”

The panel of seven included Newt Gingrich, president of the Gingrich Group and former speaker of the House; John Podesta, president of the Center for American Progress and former Clinton chief of staff; and Bernadine Healy, a columnist, White House adviser and former president of the American Red Cross and former director of the National Institutes of Health.

“I think we’re reminded to go back to Laurie’s story and review the context,” Podesta said. “I think the American people inductively get this stuff right.”

Gingrich said that society is in transition and practical decisions will have to be made, especially when it comes to designer babies.

“We had better be thinking through the ground rules,” Gingrich said. “If we don’t have some kind of larger regime, you will have 7-foot-9-inch people entering the Olympics.”

Cloning, genetic testing, embryo selection and other technologies are sparking ethical debate about social engineering, genetic tampering and human worth.

“We as a society have to really think about what it means to have a full and fulfilling life,” said Paul Miller, commissioner of the U.S. Equal Employment Opportunity Commission.

“Who decides that for the embryo is very much the question,” Miller said.

Amy Hall, assistant professor of theological ethics at Duke University, said she would advise parents to reconsider using PGD and instead adopt children already waiting for a home. Hall said that she knew her suggestion “might seem harsh,” but that faith, hope and love make that option feasible.

Much talk surrounding PGD also concerns the public’s right to chose.

“The minute you accept contraception, you’ve begun choosing,” Gingrich said.

“There is such a thing as choice in this country,” Healy said. Healy said that she honors the moral value of considering an embryo as a person, but this view can’t be imposed on all of society.

The center’s report addressed the accessibility of PGD. It requires in vitro fertilization, which costs $10,000 to $20,000. Adding PGD can bring the total to $12,500 to $16,000, the report said.

Congress has not explicitly authorized federal regulation of PGD. No state has enacted laws that directly address PGD. But some states have passed laws related to assisted reproductive technology.

Thursday, January 01, 2004

We went to St. Michaels with new friends to celebrate New Years. It was 70 degrees outside. The weather was beautiful and we all had a great time.