Tuesday, December 30, 2003

We lit 8 candles tonight. It was the best day to have Jack's birthday party. There were seven candles on Jack's cake. After all the kids were downstairs watching the movie -- we had a movie night/birthday party -- we lit the candle to observe your Yahrzeit. It was terrible timing because no-one really focused on you when we lit your candle. You got lost amidst the party. I know it bothered Mom and Nana and me. Sorry.

Monday, December 29, 2003

Today is Jack's birthday.

He seems pretty bummed out. Mom thinks that he is having problems being the same age as you were when you died. We asked the person who Jack talks to every other week what she thinks. She said that he is more sad now, but it is a good thing. It is good that he is letting his feelings show. She said that they are more intense right now because of Hannukah and his birthday.

You died last year at this time and Jack is remembering that. Mom also thinks that Jack is having problems being the same age as you were when you died.

Mom and Jack went to the Nutcracker Ballet. Bella was in it. So was David Lane.

We went to services at Adas on Friday night. We went to say the Mourner's Kaddish. Rabbi Winaker led most of the service and Dr. Mendelson (change spelling) was there. We talked to them about their wedding. I think we are invited. I think that will be a happy/sad occasion. We had bug juice and tiny
tiny cupcakes one-bite (though maybe it should be two) at the Oneg.

This is Joe's zoo. It was really nice today. It was almost 60 degrees, which is warm for the winter. As you can see, Joe lines up his animals the same way you lined up your Pokemon and Jack lined up his whales.

JPDS had a ceremony to dedicate the school. Every time I go to a program at the school I cry. Mom said that it will be hard when Joe starts going to the Gan and we join him at Shabbat Sing. You were alive and I'd cry at Shabbat Sing.

We went to Nana and Papa Sy's for Hannukah with your cousins. Again, another sad and nice evening.

The other day Jack said that if he was ever granted three wishes, these are them:

1. That no-one would ever get sick again
2. That there would be no pollution
3. That everyone would recycle

Thursday, December 18, 2003

Who's the boss, applesauce.

I just wanted to say that to you. It used to make you laugh.

I watched the German documentary the other night. I couldn't understand a word of it but I could tell you were the dead kid. Every time they showed you it was in slow motion. Mom looked good. She was very animated. I wasn't.

Molly Nash looked great. Adam has grown into a beautiful boy. He looks a lot like his daddy. They sent us a holiday card and update and they are all doing well.

Maybe we can get Cati to come over and translate. I hear the film was very well received in Germany (that's another country) and made people talk about the science we used to try and save you and whether it should be allowed over there.

Wednesday, December 17, 2003

Check this out. Everyone brought in a superhero action figure toy to school in your memory. We get to hand them out at Georgetown. JPDS is a great school with great families. I am so glad you went there. Can you tell I was in charge of getting Jack out the door. I don't fix bed head like Mom does. I think he looks cool.

Love you my superhero. Good night.

When you were young I read a book by a woman, Lorrie Moore, called Birds of America. There was a story in the book about a mom with a sick baby. The mom talked about how much she wanted to be physically close to the baby, to kiss it. I really liked that story. I was just reading a magazine and there a story by Lorrie Moore in it. This passage made me think of you.

You didn't get depressed, really. Sometimes we thought you were being sad but it always turned out to be some kind of physical pain that was not letting you be yourself.

Here is something else that I just read. It made me cry, but in a good way. Kids are tough and smart. The Molly in this story reminded me of you. Grown ups can learn a lot by listening. I am glad we always talked about the tough things.

As Medical Choices For Sick Kids Grow, Hardest Is: No More
At 5, Molly Was Diagnosed With Serious Brain Tumor;
New Trial or Time at Home?


ARLINGTON, Va. -- In an age of spectacular scientific progress, parents with gravely ill children have never had more information or better medical options.

There are new drugs on the market and more effective methods for delivering them. Clinical trials, testing the latest experimental drugs, offer hope where little or none existed. The Internet puts all this at a family's fingertips, along with stories about people defying long odds to survive.

Each anecdote and medical innovation provides cause for optimism. But when the possibilities seem limitless, one choice becomes more difficult to contemplate: whether to do nothing at all.

That problem didn't occur immediately to Darcy Reid Trick and Roger Foley back in March 1999, when their 5-year-old daughter, Molly, awoke one morning unable to move the right side of her face. After her pediatrician recommended a brain scan, her parents received devastating news: Molly had an inoperable tumor.

Standing in the neurologist's office in front of the white-on-black scan, the doctor pointed out how the tumor wove its way like a web through Molly's brain stem, an area the size of an adult's pinky finger that controls breathing and swallowing.

The couple believed that if they looked enough they would find a course of treatment that could give Molly a chance. "I just need to figure out the right questions to ask," Ms. Trick, Molly's mother, recalls thinking that day.

Their search for that treatment took them to the cutting edge of medical technology, where brain-stem gliomas such as the kind Molly had are a major focus of research. They used the Internet to find doctors performing the latest clinical trials. They learned about experimental drugs that target particular receptors in a tumor's cellular pathway and others that try to stop the growth of blood vessels that supply tumors.

Though they found many promising leads, they also learned that survival expectancy was essentially the same as 20 years ago for children with brain stem gliomas. Most die within 18 months of diagnosis.

At first, Molly's parents were willing to try anything. Doctors told them that radiation treatments could halt the progress of the tumor, at least temporarily. Within a week Molly began an intense course of radiation therapy. Her parents spent every day seeing doctors or taking Molly for radiation treatments. In their spare moments, mostly late at night, they began doing research on alternate approaches that might improve their daughter's chances for survival.

They began by researching treatments that might bolster her immune system. They received herbal teas from a doctor who specialized in Chinese medicine. Molly also underwent acupuncture and took vitamins.

Later, they learned of a biochemist who had developed a vegetable soup that supposedly slowed tumor growth. They used the Internet to track down Sun Farm Corp., maker of the broth. It cost $495 to get a case shipped from the company's base in Connecticut to Molly's home outside Washington.

Molly hated the soup, a thick green paste of lentils, leeks, Senegal root, licorice, angelica root and more. Her mother mixed it with chicken broth, put it in a juicer with carrots and apples, and even ate a bowl of it along with Molly every day to encourage her to have more.

At the same time, Ms. Trick and Mr. Foley searched the Internet for mainstream medical advances, boning up on the latest drug and chemotherapy options. They put their names on every childhood cancer and brain-tumor Web site they could find and joined related chat groups, seeking information about technologies or procedures they might have overlooked. They spoke by telephone with staff members at the Pediatric Brain Tumor Foundation of the United States, and obtained a copy of a resource guide from the Children's Brain Tumor Foundation.

Molly's doctor, Roger Packer of Children's National Medical Center in Washington, told them one in 10 children with Molly's kind of cancer survived five years or more. So her parents started hunting for survivors, hoping to learn how they beat the odds.

After about a month, they had yet to find a single child who had survived more than nine months.

Parents crave survival statistics and often base treatment decisions on them. But studies of adult cancer patients show that doctors frequently overstate the chances of survival when they talk to patients. Some pediatric oncologists say survival rates for a tumor such as Molly's are much worse than one in 10. Dr. Packer says he based his figure on personal experience with patients. He says he stands by the numbers.

"I wish I could understand what made those children different," says Dr. Packer, referring to the survivors.
Still, the couple wondered if Molly had any real chance to extend her life.

"What was really out there if we couldn't turn up a single survivor?" asks Mr. Foley, 52 years old, a free-lance photographer. His pictures of Molly and the couple's older daughter, Kate, now 18, adorn the living room wall of the family's home.

By the first week in May, Molly finished her radiation treatments and celebrated with a party at her godmother's house. A clown performed magic tricks and made balloon animals. Even as they watched Molly play Duck, Duck, Goose, her parents knew time was probably running out. The doctors had told them that the benefits of radiation are usually transient. The tumor could start growing again, perhaps as soon as six months later.

Ms. Trick and Mr. Foley wanted more information, which they hoped in turn would give them more options. They divided up the research work according to their personalities. Ms. Trick, 50, is the daughter of a diplomat father who moved around Europe. She was sent to an American boarding school in Italy for her education and, at age 19, moved to Washington, where she worked as a researcher and a journalist and earned her degree in literature at American University. She decided to focus her investigation on conventional therapies. Mr. Foley, who plays jazz trumpet and electric guitar, decided to study alternative medicine.

The couple agreed they would take certain risks if a treatment option seemed promising. They learned about a study being done at the Dana-Farber Cancer Institute using thalidomide during and after radiation treatments to prevent the growth of blood vessels that feed brain-stem tumors. On an Internet site dedicated to brain-stem glioma, some parents said the drug made their children severely lethargic. But unlike chemotherapy, it required no surgery. The medicine was in pill form.

When Molly's parents called the doctor leading the study in Boston, though, he said the trial wasn't yet enrolling patients. They talked to their own doctor about obtaining the drug outside of a clinical trial, but he said the results so far didn't indicate that it was worth trying.

Then they got what they hoped was a lucky break. Mr. Foley's brother-in-law had been speaking to someone at work who had advanced prostate cancer and attended a seminar where a researcher spoke excitedly about antisense drugs. Antisense drugs don't attack bacteria or viruses. Instead, they attempt to block the production of the faulty proteins that fuel the disease. The researcher at the seminar spoke about a small trial he had conducted on 10 adult patients with brain tumors. It was still early, he said, but they appeared to be responding to the drugs. Mr. Foley listened to an audiotape his relative's colleague had made of the lecture and then called the researcher at his office.

The scientist told him that doctors at the Children's Hospital of Philadelphia were hopeful about starting a small trial in which the drugs would be used on children with brain tumors. Ms. Trick and Mr. Foley waited for Molly to have her first brain scan after completing radiation and then booked train tickets to Philadelphia. They wanted the doctors there to meet Molly in person so they could determine whether she might be included in their clinical study.

Even if Molly was accepted into the trial, they knew it involved much greater risk than any option they had so far considered. Doctors would have to perform a dangerous surgery in the most delicate part of the brain to obtain tissue to make the drug. The couple wasn't sure doctors would agree to take the chance. But Ms. Trick and Mr. Foley were willing to try.

"We didn't want a science that had already failed," says Ms. Trick. "The idea behind this made sense."

But when they got to the hospital, the doctor who examined Molly said the trial might not take place until much later in the year, if at all. The doctor reviewed Molly's brain scan. When she finished, her comments gave Ms. Trick and Mr. Foley the impression that the doctor didn't think Molly would survive long enough to enroll.

On the train ride back to Washington, they kept Molly busy with card games, puzzles and word searches. But Ms. Trick says she and her husband also started thinking their research might not lead to a solution. They talked about whether their pursuit of more options might cost Molly what little time she had left to enjoy her life.

"We had done everything we could think of," says Mr. Foley. "Once you start looking, one thing always leads to another thing, and you just keep going down that path searching for the next thing to try."

Says Ms. Trick: "You keep going because you feel that if you're doing something -- anything -- your child won't die."
Now, for the first time, they thought about stopping.

One day in late July, Molly had difficulty breathing and was rushed to the hospital. She insisted on packing her own bag, a small red suitcase on wheels with a picture from the "101 Dalmatians" movie on the front. Molly filled the suitcase with dresses and lay down on her bed to rest. She refused to pack any socks, telling her mother she hated wearing them.
At the hospital, doctors explained that fluids were being trapped in the ventricles of Molly's brain above her tumor. They needed to perform surgery to put a shunt in her brain to divert the fluid and relieve the mounting pressure.

While Molly was in the hospital, Dr. Packer told Ms. Trick that the latest brain scan showed Molly's tumor was growing again. The radiation treatment had failed. It was time to think about enrolling Molly in a new trial using chemotherapy drugs to try to stop the tumor's growth, he said. He mentioned three open trials, including one with a drug called taxotere, which seemed the best for Molly's condition.

The couple wrestled with their choice. How much time did Molly have left? What were the chances of this or any drug working?

When they asked Molly's doctor how other children already enrolled in the taxotere study were faring, he said he couldn't tell them.

"We are not trying to hide this information, but we also don't want to overstep our ability to interpret it," says Dr. Packer, explaining why he and other doctors don't share statistics with parents while a trial is under way. The results have little meaning until the studies are complete, he said. "People would make choices based on information that might not be correct."

Molly's parents worked independently to see if they could figure out how children in the trial were doing. They searched the Internet. They contacted friends who knew doctors doing cancer research. Finally, in late July, they found one person with knowledge of the clinical trial who agreed to meet with Ms. Trick. After making Ms. Trick promise not to reveal where she got the information, the source said that eight children had already been enrolled in the trial, and that none of them were showing any response. Seven of the eight had died before they could take the second dose of the drug, administered 21 days after the first.

That night, says Ms. Trick, "We stopped researching." Instead, she and her husband talked.

Enrolling Molly in the trial would mean she would have to undergo another operation in order for surgeons to install a central line in a vein in her chest to make it easier to administer chemotherapy drugs and draw blood. She would need hours of chemotherapy infusions and could suffer side effects.

One of their oncologists had advised them to ask Molly what she thought.

Molly was sitting on her parents' bed reading a picture book when her parents sat down beside her. They told her there was another medicine available and that she would have to go to the hospital. Molly had already told her parents that she was convinced the doctors would have fixed her already if they knew how. Now, she answered without hesitation, according to her parents, who made notes on the conversation in a journal at the time.

"I don't want them to put the medicine in me," she said. "I don't want them to do one more thing to my body."

They met one more time with Dr. Packer before making their decision.

"A parent has to have hope," the doctor said, according to Ms. Trick's notes from the conversation.

But for Ms. Trick and Mr. Foley, hope was no longer enough. If the treatment seemed likely to add even three months to Molly's life, they might have tried it, they said. Instead, they decided to focus whatever time remained on Molly.

Over the next month, the family went for long walks in the park next to their home. Molly and her sister, Kate, baked a chocolate cake with Reese's Pieces on top. Friends of the couple invited Molly to a formal dinner party, where she ate salmon and played Uno and stayed up until two in the morning.

Mr. Foley took Molly on a canoe trip. They sang, "Row, Row, Row Your Boat" and screamed when a fish jumped in their canoe. They sat outside on the front steps of their home one night and by the light of the moon read "The Owl and the Pussycat," one of Molly's favorite books.

Molly practiced her spelling and subtraction problems so she would be ready for first grade. Even as it became more difficult to walk without swaying, she insisted on navigating the house alone, using the walls for support. In late August, her parents threw her an early birthday party. She wore her favorite sundress, yellow with bright flowers. The backyard filled with friends and family.

Four days later, on Aug. 25, 1999, Molly died. She was two weeks shy of her sixth birthday.

A few weeks ago, Ms. Trick went online. For the first time since Molly died, she decided to search for information about what is happening with the treatments they had considered. She suddenly found herself jumping from site to site, and remembered once again how hard it is to stop looking for one more thing to try.

My birthday is tomorrow. I think I have looked forward to this one even less than last year. That is saying a lot since last year my birthday came and went while I was sitting shiva for you. This birthday is important because it marks a year of doing something that I never thought I could do, live without you. I don't know if I could have done this as well a few years ago. You helped get me ready. You not only made me a dad but you helped me grow up. Not grow up in any boring way but in the important ways. You taught me how to completely and unconditionally care for and take care of someone.

Friday, December 12, 2003

This came out yesterday. I thought it was an interesting coincidence. Jack was really having trouble getting ready for school. Sad or just plain tired from going to bed too late. Maybe both. I don't know.

Thu Dec 11 14:24:38 2003 Pacific Time

ADVISORY for Thursday, January 8

Custom Kids? Genetic Testing of Embryos: Thought Leaders to Examine Policy Options for Preimplantation Genetic Diagnosis

BALTIMORE, Dec. 11 (AScribe Newswire) -- The confluence of advances in human genetics and reproductive science has resulted in the ability to perform genetic tests on embryos produced by in vitro fertilization. Embryos found to be free of a disease-causing gene mutation can then be selectively implanted into a woman's womb to initiate a pregnancy. The technique, called Preimplantation Genetic Diagnosis (PGD), can help parents avoid the birth of a child with a devastating genetic disease or avoid prenatal genetic testing and subsequent pregnancy termination if a fetus is found to carry the gene mutation. PGD can also be used to select the sex or other genetic characteristics of embryos. PGD is giving parents profound new power to identify and select the genetic characteristics of their children. Is this a power parents should have? Should there be limits to its uses? Are current regulations and oversight sufficient?

The John Hopkins University Genetics and Public Policy Center is convening a diverse panel of thought leaders to discuss the ethical, social, and scientific implications of this potent new technology. Please join us.

HOW: Register at www.DNApolicy.org (see Events)

WHEN: Thursday, January 8, 2004 9 -11 a.m. EST

WHERE: Renaissance Washington, DC Hotel 999 9th Street, NW Washington, DC 20001


Carole Simpson Anchor, World News Tonight Sunday, and Emmy Award-winning Senior Correspondent for ABC News, Washington

Newt Gingrich President, The Gingrich Group Former Speaker of the House

Laurie Strongin, Goldberg Family Representative

Amy Laura Hall, Assistant Professor of Theological Ethics, School of Divinity Duke University

Bernadine Healy, Columnist and White House Advisor Former President & CEO of the American Red Cross and NIH Director

Tom Murray President, Hastings Center

John Podesta President, Center for American Progress, Former Clinton Chief of Staff

Joe Leigh Simpson Chair, Department of Obstetrics and Gynecology; Professor, Department of Molecular and Human Genetics, Baylor College of Medicine

The Genetics and Public Policy Center is an independent and objective source of information and analysis on genetic technologies and policies. It is part of The Phoebe R. Berman Bioethics Institute at Johns Hopkins University and is funded through a grant from The Pew Charitable Trusts. Visit the Center online at www.DNApolicy.org. For more information about The Genetic and Public Policy Center please direct inquires to 1717 Massachusetts Avenue, NW, Suite 530 Washington, DC or call 202-663-5971.

Thursday, December 11, 2003

You are such a goofball!

We went to Liz's mommy's funeral. She was very special. Liz talked about her mommy which must have been really hard. She said something that really stuck in my mind. She said that there was never a day -- and there will never be a day -- that she didn't know that her mother loved her, believed in her and was proud of her. I hope that is true for you.

Slain Del Ray Woman Remembered as 'Gift'

By Chris L. Jenkins
Washington Post Staff Writer
Friday, December 12, 2003; Page B01

In the week since her death, Nancy Dunning has been remembered as the heart of her close-knit Alexandria community, the person residents turned to when they needed a volunteer or information on the history of a neighborhood home.

But yesterday, in an emotional funeral not far from the house in the Del Ray neighborhood where she was found slain last week, the real estate agent and wife of city Sheriff James H. Dunning was also remembered as a beloved sister, mother and wife by those who were closest to her.

"She wasn't just people's neighbor, or real estate agent, or neighborhood activist or [local newspaper] columnist. She was their friend," said Dunning's daughter, Elizabeth, 26, who gave the eulogy at the end of the hour-long service. "She wanted to know more about people . . . so she lit people up when she talked to them."

The service was attended by hundreds of mourners, including many of Dunning's large family -- she was one of 12 children in a Connecticut family -- who sat in several rows in the front of the church. They were joined by real estate colleagues, state lawmakers, City Council members and friends so numerous that many had to stand in the aisles of St. Rita Catholic Church, where the altar was adorned with flowers and candles.

"We have all died this death," said the Rev. Jim Walsh, a family friend who led the service. He said he had known Nancy Dunning for more than three decades and married the Dunnings 28 years ago.

"She was a gift . . . and directly or indirectly was a gift for each of us here today," he said.

Police officials said yesterday that the investigation into Dunning's death is continuing, but they would not release further details, including the circumstances of her death. Sources said yesterday that there was no sign at the house of forced entry, which has continued to shake the Del Ray community this week.

Dunning was shot multiple times. Sources have said she was found at the bottom of the stairs of her home last Friday by a family member, whom police have declined to identify. Friends said that she was to meet her son, Christopher, and her husband for lunch and that one or both returned to the house when she did not arrive.

The family held a private wake Wednesday afternoon.

A reward fund has been set up for information leading to the arrest and conviction of the killer. Organizers said they had raised $50,000 by earlier this week.

Dunning's slaying came just three months after the killing of a T.C. Williams High School student who was fatally beaten in Market Square, and nearly four years after 8-year-old Kevin Shifflett was killed on his grandparents' Del Ray lawn; a stranger is charged in that slaying.

Nancy Dunning "made this community a family," said U.S. Rep. James P. Moran Jr. (D), a former Del Ray resident who spoke to reporters after the yesterday's service. Moran is a close friend of the Dunnings', and his first cousin was married to Nancy Dunning's sister Patricia. "This is a tremendous loss."

Many of the nearly 1,000 people who had attended the funeral later met at a car dealership owned by Jack Taylor, a friend of the Dunnings'. In the showroom -- bereft of the usual automobiles -- friends had erected easels with large photos and collages of Dunning as a child and later as a Del Ray mother and businesswoman.

The showroom was decorated with Del Ray Street signs -- including "West Mount Ida Ave.," where the family has lived for about 20 years, and posters from several festivals that "the Queen of Del Ray" had helped organize.

I guess I'll always know where I was on December 11, 2002 and 2003.

Sadly, Liz never really got to say "goodbye," the forever kind, to her mom. I was talking to Linda and Ari feels like he never had the chance to say goodbye to you. This is from a book that Ari wrote about the two of you. A lot of it talks about how good friends you were. I picked out some of the highlights.

Happy Henry, By Ari
He is so brave. He has courage.

After the funeral we picked up Jack at school. This flyer was in his backpack.

Nana lent me this picture. This is from your graduation from kindergarten. You were so happy and proud. We were happy, scared and very, very proud of you.

Jack asked if we could swing by Childs Play to get something to leave on your grave. Mom picked out some marbles. Jack bought Pokemon cards. He has totally forgotten Yu Gi Oh and now only cares about Pokemon. Strange. We ran into Matthew Lavine. I told Mom that I like living in Washington because you get to run into friends all of the time. We are going to take Matthew and Jack rock climbing in a week or so.

I cried the whole way out to the cemetery. I put on the CD of all your favorite songs that we made to give out at your funeral. That really helped -- not. Jack was pretty sad. I reached back and held his hand. It reminded me of holding your hand in the car up in Martha's Vineyard.

When we got to the cemetery the gates were closing, just like the prayer. The man at the gate told us that we couldn't come in but we just ran by him and said we just wanted to say hello to our son -- you. It was windy and cold so we didn't stay too long. We'll be back.

We stopped off at Cactus for dinner in your honor. At home we lit a candle.

Right now I am sitting with Nana and Mommy at the dining room table watching movies of all of us from when you were born until today. We are watching the day you left the hospital after your transplant. Jack is looking at your head and he says, "Henry's hair is growing in." He was very excited. You are wearing a Batman shirt and are clutching a bag of Fritos. I forgot about the Bat Symbol that I painted on your window. That was pretty cool.

Jack pulled you in a wagon out of your room to the escalator and then out to the car. Mommy said to me the other day that of all of us, his life has been the hardest. I agree. Today we told him how proud we are of how well he has made it through this very hard year. He loves you. We all love you and miss you.

Good night.

p.s. I have asked everyone I know who has photos of you that we don't have to give me copies for my birthday. I hope I get a lot of good pictures and memories to put up here.

p.p.s. I started writing a list at Thanksgiving of what I am thankful for. I also started writing a list of things I've learned in this year since you've died. I am going to get those up for you soon.