Dear Henry

Dear Henry
Letters to my son.

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.

posted by Allen | Tuesday, December 30, 2003

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

posted by Allen | Monday, December 29, 2003

Thursday, December 18, 2003

Who's the boss, applesauce.

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

posted by Allen | Thursday, December 18, 2003

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.

posted by Allen | Thursday, December 18, 2003

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.

posted by Allen | Wednesday, December 17, 2003

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?

By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL

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.

posted by Allen | Wednesday, December 17, 2003

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.

posted by Allen | Wednesday, December 17, 2003

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

WHO:

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.

posted by Allen | Friday, December 12, 2003

Thursday, December 11, 2003

You are such a goofball!

posted by Allen | Thursday, December 11, 2003

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.
Goodbye.

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.

posted by Allen | Thursday, December 11, 2003

Tuesday, December 09, 2003

I miss you much I can't stand it. I am at work and I am crying. No-one can see me which is a good thing. This whole year thing is too much for me, but I am not exactly sure why. I looked up your yarzheit last night and it is January 1, New Year's Day. We'll light a yarzheit candle on Thursday and New Years Day. I am going to look up what stuff you are supposed to do on the year anniversary.

posted by Allen | Tuesday, December 09, 2003

This weekend was the worst. Something terrible happened to Mommy's friend Liz's mommy. She was killed by a gun. Liz used to babysit you every now and again. You remember her -- she is super nice. Her Mom was just as nice. I met her at the Hope for Henry Foundation benefit concert we had a month ago. Liz and her Mom loved each other the way Mom and Nana love each other. Liz's daddy is a sheriff. I know Mom told you about him. I am so sad for them. They didn't get to say goodbye. We are going to the funeral on Thursday, the first anniversary of you dying.

Jack was supposed to go to a birthday party this weekend but wasn't feeling well. His chest was hurting him. What was troubling him and making his chest hurt was something he heard at school. It took Jack a while but he finally explained that he was upset because he heard that there is a gun at the birthday boy's house. I am glad he told us. He felt better after knowing he didn't have to go to the party.

Yesterday a bunch of years ago John Lennon, who was one of the Beatles, was killed by a gun. He was the same age that I am. Who was your friend who really liked the Beatles? Mom will remind me.

This is today last year.

Monday, December 09, 2002
henry is laying there like one big bloated catatonic boy. we talk to him all of the time like he can hear us. it is incredibly painful to do this. we talk in that loud voice one uses when they talk long distance on a cell phone, like it's going to make any difference. putting lotion on his body is a treat. we keep him all lubed up and moving from side to side. i hope that touch really does heal. it is sad that you cannot hold or hug him with all of the tubes and wires that have sprouted out of his body.

one thing that has been really bugging me the past 72 hours is that i cannot remember henry from any time before 7 am on friday morning. it is so strange not to be able to remember the past 7 years at all. i cannot bring into focus any images of henry playing, singing, fighting with jack, swimming, eating, cuddling, reading, hitting a baseball, kicking a soccer ball, watching movies, dancing anything. i have stayed home and taken care of him the past two years and my memory is blank. it is like how my memory of my mom is frozen on the day she died. to correct this i am going to watch a copy of the nightline dvd that we brought with us. henry was featured on it earlier this year and they captured a lot of wonder what is behind that phenomenon. why does the body punish you for crying. everyone always says, "go ahead and cry."

posted by Allen at 4:24 PM

the renal folks just came in and let me know that they want to start peritoneal dialysis sooner rather than later. peritoneal dialysis uses the lining of the abdomen to filter blood. a cleansing solution (dialysate) is introduced into the abdomen via a catheter. a surgeon will place the catheter in henry's abdomen and the procedure will either be up here in the room or down in the OR. there is always concerns about bleeding with any invasive procedure with henry. his platelets are very low, but he is receiving a lot of transfusions. we are waiting for a surgeon to let us know his availability, but it looks like it will happen tomorrow. they describe this dialysis as more "gentle" than the kind where the blood leaves the body and is cleansed by machine, hemodialysis. henry's blood pressure is too questionable to go the route of hemodialysis. the way this works is that fluid, wastes, and chemicals pass from tiny blood vessels in the peritoneal membrane into the dialysate. after several hours, the dialysate is drained from the abdomen and replaced good footage of henry being henry. i cannot wait. i have a feeling this will make me cry a lot. i keep having this headache (so does laurie) that is a result of not crying but feeling like i have to cry. when you weep a lot you get a headache. i with new solution. we're now learning all about the kidneys. fun.

what is disturbing is that all of this has no impact on the kidneys' recovery. that will happen organically, kinda like the first breathe from a baby. they told me that the small size of henry's kidneys and the trauma they've endured in the past (from toxic meds) will lengthen the recovery period. it could take as long as 4 weeks for them to start to work on their own. what the dialysis will do is clean henry's blood and take away a lot of the excess fluid that has caused him to blimp up over the past 3 days.

laurie is back at the ronald mcdonald house with her mom, her aunt and joe and jack. i bought her an aero bed because i cannot bear to see her physically uncomfortable in addition to the emotional anguish.

henry is being brought out of his deep stupor and he just squeezed his eyes shut a little tighter when i asked him too. yeahhhhhh! i asked him if he wanted to see laurie and his eyelid flickered. i called her and told her to get back here. he hasn't responded to anything since.
posted by Allen at 3:20 PM

smile, smile, smile

every time i think of you i smile for a while
that's the one thing you always do
you always smile, smile, smile

acting out stories and hugging your friends
i smile for a while
you know what i'll do when i see you again
i'm gonna smile, smile, smile

like ripples in a pond and runners who pass the baton
good feelings will go on for mile after mile after mile
and your big heart circles the world every time that you smile

doing those voices and telling your jokes
i smile for a while
your crazy hairdos and thriftshop coats
they make me smile, smile, smile

every time you break into a broadway song
i smile for a while
everyone around you starts singing along
they smile, smile, smile

like ripples in a pond and runners who pass the baton
good feelings will go on for mile after mile after mile
and your big heart circles the world every time that you smile

o' you know i love you and i am glad you're my friend
i smile for a while
you know what i'll do when i see you again
i'm gonna smile, smile, smile
smile, smile, smile

dan zanes and friends
night time
festival five records
20002
posted by Allen at 9:11 AM

posted by Allen | Tuesday, December 09, 2003

Friday, December 05, 2003

Mom called. She said that today was the last day she spoke to you. I feel so bad for all of us. I went back and looked at the journal entry from today last year. This was our last time together. Tomorrow our lives fall apart forever.

Thursday, December 05, 2002
a good night overall. we made two adjustments last night. i asked the resident to figure out how they were keeping henry comfortable when the pancreatitis was just diagnosed. she came back and said the dose of morphine was higher last week. so she wrote him for more. then, when the nurse came in and asked if we wanted henry to get the morphine when he wakes up during the night, i said "no, just keep it coming, even if he is sleeping." i remember someone once said "stay ahead of the pain" and that has been my mantra of late. don't wait for him to wake up in agony. keep him in a comfort zone. it worked. we only got up for vitals and for peeing and pooping and when the nurse made noise. no long sessions of moaning and discomfort. there was a lot of sleep happening in this room last night. henry actually sounds/seems like his almost normal self this a.m. when he woke up to go poo. the anger, sadness and pain have subsided a little. maybe even his counts went up a bit to round out this very encouraging night. there's the miracle i was asking for.

happy hannukah!

posted by Allen at 7:25 AM

Five minutes ago I ran into someone I used to know from my old job. She was visiting the building with some other people. She asked me how you were. I told her that you had died almost one year ago. She was sorry. I tried to change the subject so the other people wouldn't be too uncomfortable and I wouldn't cry. I walked back upstairs to where I sit. I am feeling pretty sad and upset but I need to get back to work. I just wanted to tell you how much I miss you.

posted by Allen | Friday, December 05, 2003

Wednesday, December 03, 2003

Here are some pictures we took this past weekend, Thankgiving weekend, in St. Michaels. You were missed big man. I hope you like the picture of all your cousins. They ran around outside and had a great game of tag while the sun was setting. It was a beautiful sunset.

posted by Allen | Wednesday, December 03, 2003

Last night when I put Joe in his crib I kissed him goodnight and walked out of his room. I was walking down the hall when he started to cry out, "Dad, Dad, Dad." It hurt me so much in my heart to hear that. I felt like I was hearing you. I walked into Mom's and my room and got under the covers so I wouldn't hear Joe. I knew he was just trying to stay up a little longer. He would fall asleep quickly if I left him alone because he was very tired. It is hard to resist going to him. The next thing I know I was waking up in the morning.

I have to work on being extra good to Mom when she is sad. She had to work on telling me when she is really sad, and she is doing it. The other day she told me that she keeps thinking about December 11 and feels very run down. I need to be good at listening and make sure the guys don't get too crazy when Mom is at her lowest. I am taking the day off of work on the 11th to be with her. I don't know what we'll do. Mom suggested we do stuff that you really liked to do. Maybe we'll go out to St. Michaels or go to Sullivans and buy something for the boys and/or kids at Georgetown Hospital. Should we have lunch at Rainforest Cafe and dinner at Cactus Cantina. Maybe we can watch Disney movies all day.

Here is what I wrote in my journal last December 3. The next day, December 4, is the last moment that you had outside of the hospital. At least it was in a toy store even though you were so miserable. God, I am sorry for the pain you suffered.

Tuesday, December 03, 2002
taking inventory. in the past month i have had tix but didn't go to...

vikings v. falcons
vikings v. packers
redskins v. rams
minnesota v. michigan (college)
fountains of wayne
kim richey

testimony to my optimism i guess.

henry's blood counts continue to plummet. the docs haven't a clue. his platelets were 8K this morning. possibly/probably the lowest since transplant. they want to do a bone marrow aspiration -- perhaps he has graft versus host disease in his marrow. that doesn't sound good, does it. i haven't been able to patch together more than 3 hours of consecutive sleep in 4 nights. i am burned out and don't think i am a good cheerleader for henry right now. he needs to be gently pushed and prodded and cajoled to help him get out of the hospital. whatever his physical problems, they are just totally crushed by his emotional upset. i think his insistence on morphine for the real or phantom pain (i think it is real but not that terrible, more like a "soreness") is the saddest thing to come along in a while. but i have long since learned not to doubt or second guess henry when it comes to pain. he fell last night after pooping and i had to quickly grap his arm to keep him from hitting the floor and ripping out his tubes. of course i had to grab him hard on the arm that is presenting him with so much pain. this is madness. henry slept a bit last night. i didn't. i was too scared of everything, of him waking up in pain or needing to poop, of him not making it out of minnesota.

pat is here tomorrow and i told laurie that i need to take a half day for myself. i am going to buy a winter coat and see if i can go to the calhoun beach club (our old apt.) and take a long sauna and whirlpool bath at the fitness club. i used to do that every other day (when i wasn't at the hospital with henry) when we were here in 2000 for transplant. i never got sick or burned out. i gotta say that pampering goes a long way in crappy times like these.

laurie is smart. she is trying to strategize how to get us home soon because she thinks that it will perk up henry. that is true but what nags at me is that we reach a certain point that we cannot bear being away and then the tradeoff is his physical well-being for his emotional health. my fear, of course, is getting him home and having him just get sick again. i think that has happened before. i kinda want to stick it out here a while longer to get those few "good weeks" in but being away from home my be doing everyone more harm than good. it is so hard to figure this all out. laurie usually has a good sense of what is best to do. i think i have more patience because i have more optimism. i keep thinking who cares about a week or month or year when it buys us a lifetime. maybe that isn't an option or the right way to think.

it is all very christmassy here, in the hospital and the ronald mcdonald house. i feel like a bagel eater among bacon eaters.last night i took the boys down to have our first communal dinner. santa claus showed up too. scared most of the kids. i couldn't identify any of the things that had been mashed into the dozen or so noodle and macaroni based dishes. the volunteers who (sweetly) donated the meal maybe should have coordinated a little better. instead of a bunch of brown things there could have been something green. jack wanted a salad which my dad made for him from the communal fridge. joe had some milk, two spoonfuls of yogurt and i ate celery. my dad scooped up a lot of the casserole looking stuff and chowed down. how come i didn't inherit his intestinal fortitude. laurie, henry, jack and i are as finicky as they come. there is hope for joe, though. there is this huge family of south dakota ranchers staying in the same part of the ronald mcdonald house as us. not much in common. laurie is down on them 'cause they don't do their dishes and leave their food out all night. they just sit outside in the below freezing temps and smoke. stress is one thing we have in common, i guess. overall, it is a great facility and the people are really nice. oif course yesterday we got the flyer under our door that some kid staying there had tested positive for chicken pox. i can imagine the shudder of fear that ran through every other adult in that house. luckily, it is very unlikely that joe was exposed.

joe seems to be doing the best of all of us. in the past two nights jack threw up all night and then emotionally cratered the next because we have lost his blanket in all of our moving around. laurie said he was sobbing last night. dealing with the emotional is so much harder than treating the physical ailments.

we're coming up on our one month anniversary here. let's hope things start to improve soon.
posted by Allen at 8:43 AM

posted by Allen | Wednesday, December 03, 2003

Tuesday, December 02, 2003

Bless Jack's Rock 'n Roll soul, when we were waiting for the Oxford Ferry he asked Mom and me to remind him who is the "King." Elvis Presley. We then went through and explained that Bruce Springsteen is the "Boss;" Aretha Franklin is "Queen of Soul;" James Brown is the "Godfather of Soul" and Michael Jackson is the "King of Pop." Jack had us drill him on this a couple of times. I should ask him tonight who is the Boss. See if it sank in.

When we watched Fantasia 2000 this weekend there was a part where Quincy Jones comes on to introduce George Gershwin's (he is a composer, like Mozart and Beethoven) Rhapsody in Blue. I told Jack that I had met Quincy Jones last month at work. He is one great musician, composer, producer and all-around cool dude.

Mom says that Jack wants to take piano lessons. I think it would be great if he learned to play guitar. I remember we were trying to get you guitar lessons but the teacher was all booked up with students. We were supposed to call back later to try and schedule you.

posted by Allen | Tuesday, December 02, 2003

Jack kept wondering when were going to hit December. He wanted to begin the countdown to his birthday. Every morning now he has announced to me how many days are left until the 28th.

For Mom and me it is a different countdown. All we think about now are how many days until December 11, the day you died. I have been scared to go back and read the journal I was keeping. This morning I read what I wrote for December 3, which is tomorrow. You were in a lot of pain. I am so sorry.

posted by Allen | Tuesday, December 02, 2003

These are some of the photos that Nana had that I was looking at before Thanksgiving dinner. They are all taken at St. Michaels over the years. I cannot believe how different you look at different times in your life and treatment. I will always remember you as the cute, handsome guy you were. I miss your face.