Sorry I haven't written, but know I have been thinking about you constantly.

These are pictures from Sunday when we went sledding at Battery Kemble Park. It is the best sledding in Washington. What was weird was I flew to Los Angeles just a few hours after sledding, so by the evening I was somewhere warm. I just got back this morning, and tomorrow morning I leave for New York.

I've told you that when I travel I have a lot of time to think of you. Now I watch movies of you on my iPod. I also watch a lot of my favorite TV shows which I record on TiVo and movies. I am reading this biography of Walt Disney and watching some of the old cartoons and animated films, like Fantasia, Snow White and Dumbo. I watched Iron Giant on my way to California. I love that movie. "Rock." "Tree." I loved watching with you. Iron Giant isn't a Disney movie, but the deer scene in it is purposely like what happens in Bambi. Do you remember how you got an Iron Giant toy robot at the Make A Wish event at the Willard Hotel.





When I was in the airport waiting for my plane, I ran into a very old friend of mine, Kathy, who grew up across the street from me. We hadn't seen each other in forever. She was on her way to Zurich, Switzerland which is in Europe. Mommy goes to China next month and that is even farther away. I told Kathy about you and you dying, and it was hard not to get emotional. I just did it as fast as I could.

Kathy was really sweet. She told me that for her daughter's birthday everyone came with Teddy Bears for kids in the hospital instead of bringing presents. Isn't that great. I liked seeing her and catching up on old times. I have been in touch with a lot of my high school friends lately, which has been really nice.

I love you.

We went to St. Michaels for the day. Papa Sy has a saying and it's true,

"Everyone holds hands in St. Michaels."

Whenever you drive or ride through town you always see couples walking along holding hands. That is part of the reason that I like it so much out there.

I was reading one of Nana's magazines and I saw this story below. I remember writing to you about your dentist who keeps sending you birthday cards. I think I have the opposite response. I like getting this kind of stuff 'cause it makes me think about you.

The daddy who wrote this says that it is still "painful." I think I am more like the medical story I posted a few days ago, which says that most people after some time has passed feel "pangs" of "yearning," for loved ones who have died rather than "pain."

I get pangs now and then, and I sometimes get these feelings of "I can't believe you're dead." Most of the time I just think about you without being sad or anything. Just missing you and loving you a lot.

But I do know there will be a lot of sadness around everyone's bar and bat mitzvahs. Hannah is going to do a lot about you at hers, I think there is a "Henry Aliyah"; Ari's, Jake's and Simon's will be tough; the time around your 13th birthday will be especially sad; and Jack's bar mitzvah will be a mix of happy and sad. We had to schedule a date for Jack's and one of the choices they gave us was December 12 -- the day after your death day. We decided against that.



Dear Junk Mailers: Leave My Son Alone

Thirteen years after his death, advertisers still target Jake with offers of tuxedos and snack cakes.

By Gary Wiener

Feb. 19, 2007 issue - When his 18th birthday arrived, my son, Jacob, became awfully popular. The U.S. Navy wanted him. "Before you find your place in the world, maybe you should see it first," it urged. A local menswear shop offered him 50 percent off a tuxedo package for high-school graduation. And a razor company sent him a free razor, hoping, I suppose, to make a lifelong customer out of him. Their only miscalculation was that Jacob didn't shave. Nor was it likely that any of the armed forces would gain Jacob's services. And he certainly wouldn't graduate from high school. Jacob, you see, died in 1993. He was only 7 years old when a cancerous brain tumor stole him from us.

As much as we loved Jacob, that period of our lives is still incredibly painful to remember. Yet, years after his death, letters addressed to Jacob find their way into our mailbox. Early on, I was driven almost to tears by these inducements for our son to attend a ritzy local private school or to sample a particular snack cake. I knew my wife would be devastated by such mail, and I tried to get to the mailbox first so that she would never be affronted by envelopes addressed to her dead first child. Much later, I realized she had been doing the same thing, hastily throwing out mail addressed to Jake so I wouldn't have to endure the epistolary abuse.

I thought I had learned not to take these mailings personally, but in the months surrounding Jake's 18th birthday I had to throw out dozens of letters soliciting my dead son. How galling it was to receive envelopes with bright colors and bold lettering urging him to have professional high-school graduation pictures taken, to consider a particular limousine service for prom night or to make sure not to drink and drive.

I won't dwell here on how wonderful and gifted my Jacob was, how he began to read before his 3rd birthday, how he was doing long division and double-column multiplication in his head when he was 5 years old. When Jacob died, one of our friends simply said, "I thought he would cure cancer." Like many children, Jacob loved the alphabet and numbers. Unlike others, he had a photographic memory and was capable of prodigious cerebral feats at a young age. One of his 4-year-old games was to memorize the license-plate numbers of every car on our street—and we lived on a fairly long street. Jake could see a car coming down the block, and tell you, without hesitation, what number house it was going to pull into. He would then proceed to inform you of what other license plates belonged to cars at that address. He also loved the 50 states, and could rattle them off in alphabetical order. Another of his games was to spell state names such as California—backward. So I can almost imagine him receiving these solicitation letters from all over the country and delighting in the return addresses. But he would have had no interest in their contents.

This direct-mail campaign aimed at my dead son is just one of many trials that the parents of dead children face. I didn't get overly upset when vandals knocked over his gravestone a few years back, nor even when the local TV station made a big story of it and actually showed the toppled stone on the 6 o'clock news. And though I'm not particularly pleased that, according to the Social Security Administration, "Jacob" has been the most common boy's baby name in America each year since 1999—and that every single mention of that word shoves me back to a time when my son, too, was alive—I think I've dealt with that as well.

The mail addressed to Jacob has slowed recently, but some still trickle in. As summer approaches, Jacob usually gets a few feelers from temp agencies looking to hire college kids on summer break. Or, ironically, an offer for low-cost life insurance. But that's about it.

I'm not dreading Jacob's 21st birthday, though I can't say I'm looking forward to the offers of credit cards, loans and invitations to try this brand of beer or some highland single-malt Scotch that are sure to find their way into our mailbox.

Where will it end, I wonder. On his 50th birthday, will we receive a solicitation from AARP?

When you are the parent of a dead child, you try, desperately, to keep his memory alive. You beam inside when people tell you that they remember him and that he was a nice boy. But he's been gone a long time, and now those comments are rare. The advertisers, though, will never forget Jacob.

Wiener lives in Pittsford, N.Y.

Yearning most common after loved one's death: study
Wed Feb 21, 2007
By Michael Conlon

CHICAGO (Reuters) - The most common reaction to the death of a loved one from natural causes is not depression as has been thought but rather yearning or pining, a study said on Tuesday.

The study found that the most characteristic feature of bereavement after a death by natural causes "is more about yearning and pining and missing the person -- a hunger for having them come back," said senior author Holly Prigerson, director of Dana-Farber's Center for Psycho-Oncology and Palliative Care Research.

"The focus on depression is misguided," she said in an interview. Yearning "really dominates the psychological picture, (with a feeling) that a part of you is missing and that without this essential piece you won't be happy."

She said the previous belief was that depression dominated bad feelings, but the new study showed that yearning peaks after four months and that depression, which can be a product of that sadness, peaks much later.

The study, which was published in this week's Journal of the American Medical Association, was written by experts at the Yale University School of Medicine, New Haven, Connecticut, Boston's Dana-Farber Cancer Institute and elsewhere. It was based on interviews over two years with 233 people who had lost a loved one, most often a spouse, due to death from natural causes.

The study confirmed the overall sequence of the "stage theory" of grief that was popularized by Dr. Elisabeth Kubler-Ross in the 1960s -- disbelief, yearning, anger, depression and acceptance, researchers said.

"But, equally important, the data provide a benchmark for how grief changes over time," said Prigerson, a bereavement expert.

As a result, she said, those who help treat grief need to focus first on yearning.

The report said sudden deaths to due to trauma or other reasons -- which account for about 6 percent of all U.S. deaths -- may produce higher degrees of disbelief and anger and less acceptance than found in the study.

Regardless of how the data are analyzed, the study concluded, all of the negative responses are in decline by about six months after a loss. If it goes beyond six months the bereaved survivor may have to be referred for treatment.

This weekend was supposed to be our annual ski weekend with the Paneros. But on Saturday morning before we left Joe got sick and threw up. I really didn't want to leave him, but Jack was itching to ski and to spend time with his buddy Liam. So Mom and I agreed that I would take Jack and she would stay home with Joe.

Hugh couldn't make it this weekend either 'cause he had to work. Something very big happened. Hugh's company, where I used to work, merged with the other satellite radio company. But MB, Sophia, Sophia's friend and Liam all made it out to the ski place.

It snowed a lot and was really cold. Over the whole time we were there it barely reached 20 degrees out. The mountain was at a beautiful place called Deep Creek Lake in Western Maryland. Before you were born I went there with a lot of people for Cousin Ron's birthday. That time we all waterskied on the lake. This time we watched people snowmobiling and ice fishing. I don't totally understand ice fishing. I think it is more about sitting alone than it is about catching fish. But that is just a guess.



Jack and Liam took snowboarding lessons. Those two are incredibly tough because it was super-freezing, the wind was blowing and the snow was falling. Jack wasn't totally in love with snowboarding and wanted to get back to skiing.



Today Liam went snowboarding and MB went cross-country skiing. I got to ski with Jack, who is good and definitely enjoyed it more than snowboarding.

It was sad to leave with the weather becoming so nice. The sun finally broke through.





It would have been a lot better if both families were at full-strength, but it was fun anyway and nice to spend time with Jack. We had a good time on the drive home rockin' out to Led Zeppelin, groovin' to the Sugarhill Gang and laughin' along to Bill Cosby.

Jack spends a lot of time watching and reading and listening to funny things. I think he is a lot like me. He loves the Simpsons on TV and reads the comics every morning. It is good that he spends so much time with things that make him smile and laugh. He is always telling me about something funny he read in Calvin and Hobbes, or repeating a joke he heard.

Right now he is devouring a Peanuts collection. Just as Charlie Brown says, "Rats," Jack says "Snap." That is his way of saying "darn it."



They have this neat thing at the ski place. If you are in Fourth Grade, like Jack, you can ski for free all season if you have all A's and B's on your report card. We got Jack's report card the day we left. I wish I had brought it with us. He could have skied for free. Who knew.

Joe is feeling better now, and Mom has plans for all of us to go skiing next weekend. Joe went ice skating for his first-time ever a week ago at Cabin John, and had the best time. He was falling on his butt a lot at first, but then got the hang of it and was doing jumps. I know he'll take to skiing the same way. He is fearless and a great athlete.

You want to know something else about Joe. He likes to draw. He is Mr. Baseball but he is also a bit of an artist. I like that about him. He makes great drawings at school and at home. He asks me to name something -- like an elephant -- and he'll draw a picture of it for me. He drew a lot of valentines for Valentine's Day.

Joe is 5. I kinda remember you being at your peak when you were 5 -- before we left for transplant.

I miss you so much big guy. You never got to ski. Never got to ice skate. I've said this before, but I miss all of the first times you never had.

I love you.

Henry TV!




You gotta look close to see Aunt Abby dancing with you at Tim and Catherine's wedding. I borrowed their wedding video 'cause I knew you'd be on there somewhere.

You are in the lower part of the frame - too bad that your back is turned to the camera. I would love to see you more close up, and more of you in general. You were quite dapper and handsome in your tuxedo. I remember shopping for it with you.

I just finished reading a book, The Innocent, written by this guy Harlan Coben. His books are mysteries. I have read a bunch of his books now. I read an essay he wrote in a magazine about his best friend who died two years ago in a plane crash.

Harlan Coben is my age and grew up in New Jersey and his books take place there. Aside from his books being really fun, I am sure that I like them because of my being the same age, Jewish and living in New Jersey when I was little and then with you at Hackensack. I can hear the loss of his friend in his writing. That makes me like him too.

I also like mysteries by a guy named George Pelecanos. He lives in Takoma Park or Silver Spring and all of his stories take place in Washington, DC. It is fun to read in a book all of the places that you see every day. He also likes the same kind of music I do, and also I love seeing him mention in his books the music that I like. I sent him an XM radio years ago and sure enough XM popped up in his last book. That felt great.

The first Harlan Coben book I read was called Darkest Fear. I think I bought it at an airport because I was looking at a whole row of books and chose his because I thought that his name was interesting. I figured it was some strange misspelling of "Cohen."



Naturally, the book was about a kid who needed a bone marrow transplant. I remember being in an airport reading it and just being blown away when I read that this kid had Fanconi amemia. As I read I kept saying to myself, "this isn't right," and "that's not right." I knew too much. That is a mystery title, "The Man Who Knew Too Much."

So of course I tracked down Mr. Coben's email address and wrote him. I think that I said to him that I thought it was great that he wrote about FA. Before Molly, no-one had ever heard about FA - even though it was a kid who had FA who received the first cord blood transplant ever - and it is important that more people know about it so we can get more money for research and find a cure.

I do remember asking him if he could make a contribution to the Fanconi Anemia Research Fund. I thought about that a few weeks ago when I was talking to Molly's mom who said she asked the same thing of Jodi Picoult, who wrote the book "Sister's Keeper," which is a story about a little girl who needs a transplant.

Back to the book I just finished, "The Innocent." It was a good book, and there was one part that I found personally interesting.



If you click on this you can read it.


(click to read)

I think about this myself. I think that Harlan Coben is really sensitive to it because of his friend's death.

This is what he wrote about his friend's son.

On December 10, 2005, a little more than a year after the plane crash, Jesse Miller was called to the Torah for his bar-mitzvah. Looking up at him from my seat with the congregation, I saw Steve, of course. But as his beautiful son ended the service by singing Imagine by John Lennon, I realized something simple and profound.

I love Jesse.

I have everyone's pictures that they sent us during December. I have them in a pile because I have wanted to scan them in and put them on here so you can see how everyone is growing up.

We don't send one out.

Dr. Wagner came to town yesterday and we went with him up to the Senate. They had a hearing about stem cell research.

The Bravest 'angel'
BY JONATHAN LEMIRE
DAILY NEWS STAFF WRITER
Friday, January 19th, 2007

Most of Samantha Alcazar's 18 years have been spent battling a rare blood disorder. But today she will meet the "angel" who gave her a new chance at life - and he will be wearing an FDNY uniform.

Samantha, who has shuttled between hospitals in Texas and her native Mexico, had been given little chance to survive until Firefighter Stephen Duffy provided her with a bone-marrow transplant and hope for a healthy future.

"I'm going to tell him that he's such an angel," said Samantha, who will meet Duffy for the first time today at FDNY headquarters, thanks to the New York Blood Center.

"He gave me so much. I'm super nervous and I'm probably going to cry."

Samantha, who was born in Guadalajara, was diagnosed with a low platelet count in her blood when she was 6 years old. Her health took a turn for the worse four years later when she began to suffer headaches and severe bloody noses.

In 2002, Samantha's platelet count fell to a dangerous 17, well below a normal count, which ranges from 150 to 400. Doctors diagnosed her with a rare - and often fatal - bone-marrow disease, Fanconi's anemia.

"They told her she needed a transplant and she needed it soon," said Samantha's mom, Claudia Alcazar, 35, who moved her daughter to San Antonio, Tex., in search of better medical care. "I prayed and prayed and waited for God to help us."

A year later, her prayers were answered.

Duffy, who is assigned to Ladder 16 on the upper East Side, had given a blood sample while in the Fire Academy and was told it perfectly matched what Samantha needed.

Though faced with a painful transplant operation, Duffy, 33, agreed to help.

"It's a tremendous feeling to help," said Duffy, an eight-year veteran of the FDNY. "In our job, you do get lots of opportunities to save lives but there's something different about this.

"It's more personal," said Duffy, whose older sister is fighting her own battle against breast cancer. "It's like giving a part of yourself."

Today at FDNY headquarters, the New York Blood Center, which facilitated Samantha's transplant, will honor 80 members of the department who have donated lifesaving bone marrow.

"Donating bone marrow, like running into burning buildings, has become a duty to firefighters in their desire to help others," Fire Commissioner Nicholas Scoppetta said. "In both cases, these are strangers, but that makes no difference to firefighters."

Samantha's mom said she can't wait to wrap her arms around the firefighter who saved her daughter.

"I have cried so many tears of sadness, now I can cry with joy," she said. "We are going to hug him so tight."

This poem is by a boy who came to the Superhero celebration last weekend.

Mom and I went to a movie tonight and Zhenny stayed with Jack and Joe. Mom said that Zhenny told her that a bunch of people in her family, who were only in the 40s and 50's, have died in their sleep. She said that Zhenny explained that she dreams of you and a number of times you have saved her life.

Zhenny said that she'll have trouble breathing in her sleep and you wake her up. Wow.

Mom also said that Zhenny feels you around the house. If she babysits late she has her husband Peter come in and stay with her because she is a little freaked out by your presence.

Kabir is a kid who Dr. Shad was treating at Georgetown. The Hope for Henry Foundation gave him the Harry Potter books and Disney videos. I also loaded up for him a video iPod with some Disney movies and Harry Potter audio books. I hope he is using that on his flight back to India.

I have a lot of pictures of him. I will put some up on here.

This is a very sad story.



Teen Leaves 'His Only Hope' Behind in U.S.

After 20 Months, 14-Year-Old With Leukemia Returns Home, Saying No More Chemotherapy or Bone Marrow Transplants

By Susan Levine
Washington Post Staff Writer
Thursday, January 11, 2007; B01

They had spent a tiring weekend boxing up his Harry Potter books, his Disney videos, the games that had helped sustain 14-year-old Kabir Sekhri in this foreign land. And as his mother and father checked off their final packing details, so did Kabir's doctor. Her list included sterile dressing kits and needles, gamma globulin and antibiotics, methadone for pain -- enough to last him until spring, she had decided.

If only she could guarantee that his cancer would allow him that much time.

These were not the preparations anyone had envisioned when Kabir and his parents, Vikram and Sonia Sekhri, came to Washington from New Delhi almost 20 months ago. They had hoped for a triumphant return to India, a declaration of victory marked by the full recovery of Kabir's health, animated smile and thick, dark hair.

Instead, when the family arrived at Dulles International Airport late Tuesday afternoon, a frail-looking Kabir rode in a wheelchair. A navy knit cap concealed the damage wrought by chemotherapy. His leukemia had kept coming back with more and more vengeance until he unequivocally declared that he was done.

It was a wrenching decision, not only for his parents but for his oncologist, Aziza Shad, who had led his care at Georgetown University Hospital. Yet it was a decision they all felt compelled to honor.

The victory now was simply that he was there at the airport, stable enough medically to endure two long flights halfway around the world. Shad bent low to ask Kabir how he was feeling. She would be traveling the more than 9,000 miles with him.

"I made a promise I would get him home, and I need to stick to my promise," she said.

The journey on which they had embarked was not all that different from the journey many families take. Still, something about Kabir's gentle, uncomplaining manner and his extraordinary distance from home prompted the hospital staff and other patients and parents to embrace him in a singular way. The Sekhris reciprocated. And somehow, despite all the heartache, his mother found blessings. "God's been very kind," she'd say.

Kabir was 11 when he first became ill, and the doctors initially attributed his aches, fatigue and swollen lymph nodes to an infection. When his symptoms didn't respond to the usual medicine, they looked further. The correct diagnosis -- of T-cell acute lymphoblastic leukemia -- came the same week that Kabir's grandfather succumbed to throat cancer after years of grueling treatment. "That was a tender moment for us because we had seen all the treatment fail," Kabir's father recalled. "We thought, 'How can a child go through this?' "

The Sekhris quickly learned. Kabir's particular disease assaults children more than adults, especially older boys, and it carries a poorer prognosis than other pediatric cancers. Though his body responded well enough to the early chemotherapy to put him in remission, he had not completed the full regimen when he relapsed.

"If you really want to do something for him, take him to America," their oncologist in India advised. The newest drugs were available in the United States, as were the best centers for the bone marrow transplant that probably would be needed to save his life. As his mother remembers, "We were told this was his only hope."

They boarded a plane in May 2005, leaving behind Vikram's leather goods business and everything Kabir knew: his beloved sister and the aunts, uncles and cousins who make up the Sekhris' close-knit extended family, the friends he had played with his entire childhood, the dusty, teeming city of Delhi. A relative in Falls Church had contacted Shad, head of the pediatric oncology division at Georgetown's Lombardi Cancer Center. Would she evaluate his case? Did she think he had a chance?

Yes, she did.

Four months of highly aggressive chemotherapy drugs ravaged Kabir but pushed his body into a second remission that made him a candidate for a bone marrow transplant. The perfect donor: his 16-year-old sister, Ridhima. She flew from India, and the family traveled to Duke University Medical Center for the procedure. The graft took well enough that when Kabir returned to Washington in early 2006, he was out of the hospital far more than in it, giving him a chance at memories not integrally tied to pain.

He went to New York, visiting the Statue of Liberty and gawking at Times Square. He also became an enthusiastic camper at a National Institutes of Health program for children battling cancer, canoeing and riding horses and even trying fencing.

"I want to come back from India every year for this camp!" he exclaimed upon his return.

The Sekhris started counting the days to the first anniversary of Kabir's transplant. By September, it seemed likely that they would make it, which would mean that Kabir would be able to be fly to India in time for a cousin's wedding celebration. He'd already bought new clothes.

He never wore them, however. The one-year checkup at Duke revealed a second relapse. The news was shattering. "Everything came to a standstill," his father said. In an instant, wedding travel became impossible, as did his son's greatest hope: to tell everyone back home that he at last was well.

Kabir was readmitted to Georgetown, and the weeks that followed deteriorated in a horrific downward spiral. He rejected any talk of another transplant but acquiesced to Shad's entreaties for one final attempt at chemo. She tried different toxins and combinations as her patient grew ever weaker, wracked by days of extreme fevers, numbness and bleeding. He stopped eating and virtually stopped communicating. When he did talk, he'd say plaintively, in a wispy voice made almost childlike by the drugs: "I just want to go home." Shad feared he'd never leave the hospital.

But just after Christmas, after the final drug in Western medicine's arsenal, a bone marrow biopsy showed the unexpected -- a partial remission. No matter, Kabir reminded her; he'd said he was finished. But Shad, who has a son just one year younger, still is struggling with that. "All I know is that this child gave it his best," she reflected late last week. "He gave it again and again and again and again."

On the afternoon of his departure, the staff at the Lombardi Center threw the Sekhris a cake-and-tears send-off. Then the family and Shad headed to Dulles. Kabir might have wished he'd seen more of America. "I would have liked to have gone to Disney World," he admitted. Not this trip.

His small entourage proceeded to a secluded alcove of an airport lounge. Kabir snacked on french fries, glimpsed at long last the swirling white magic of a brief snow shower and fell asleep under the handmade quilt given to him at the hospital.

"It's time," his mother quietly roused him. The teenager sat up in an instant and readjusted his navy knit cap. And as his parents followed close behind, an attendant wheeled him the final distance down the corridor to gate 32, through the last checkpoint and onto the plane.

He never looked back.

Here is the blog of a father whose son has Fanconi anemia. His name is Jack.

http://savejacksimbulan.blogspot.com/index.html

Jack and his family live in the Philippines. That is where Zheny is from. She is still our nanny.

I'm starting a new job tomorrow. I left XM, which was really hard. You saw the letter from Hugh. He is a big reason why it was so hard to leave. It feels like a loss, not like losing you, but a loss. I started there right after you died. It helped me get by, to live.

I had a moment last week when I couldn't believe you were dead. I was in the basement doing the laundry and it lasted a nanosecond. It doesn't happen much anymore. Not at all. Though I don't think that means I've "accepted" your death.

A family got in touch with us this weekend about their son who has Fanconi anemia. We haven't gotten back to them yet. Their son's name is Henry.

I was putting Joe to sleep tonight and I told him that I was tired of reading baseball books and baseball cards and wanted to read something else. Luckily we have a zillion books about ducks, bears, chickens, turtles and farting dogs.

I asked him to pick out a non-baseball book and thankfully he grabbed a Spongebob Squarepants Halloween book. But the joke was on me because one of the costumes Spongebob tries on for Patrick is -- baseball player. Argh.

For some reason Mom brought this book into our room. I think she may have said something about ordering them for Hope for Henry patients. I will try to read it to Joe tomorrow night at bedtime.

-----Original Message-----
From: Michael Cherner [mailto:ride4life7761@mac.com]
Sent: Friday, January 05, 2007 2:48 PM
To: info@hopeforhenry.org
Subject: Michael

Aunt laurie

its michael, in school today we were sharing theeries about what happendes after you die, i shared mine and i was sad. so i went on the hfhf website and i desided that i want to be on the board of directors. i be soo happy if i could be part of everything, work, email, plans, name on the board of directors in the website, everything. i would be so happy if you could do this. thanx a ton

love michael

p.s. u can email me back