Dear Henry:

When Jack was student of the week he took a piece of poster board and put pictures of him and everyone in the family on it. It is in Jack's room these days. This morning Joe and I sat on the floor and looked at it. I pointed to Jack and said, "Jack." Joe said, "Jaaa." I pointed to Mom and said, "Mom." Joe said, "Mommy." I pointed to you and said, "Henry." Joe said, "pfffftt." We went around again and when we got to you Joe again said, "pfffftt." I'll keep working with him. He'll know you.

Yesterday we went to Turtle Park. It was Safety Day. There were police cars and police horses and all sorts of fun things. There was a table sponsored by Children's Hospital called, Ask the Doctor. Of course 2 of the 3 doctors had been your doctors. Dr. Chahide, your surgeon, was there. Remember when he pulled out the long g-tube to put in the mickey button. Boy were we all scared. And one, two, three it was out. And Dr. Gatto, one of your early pediatricians, was there, too. I was happy to see them, but it made me sad at the same time.

Today we went to visit Hannah and Michael in Annapolis. I saw the swim vest that you wanted to wear so badly last summer when we went out there to say hello. I think Jack wore it some, but when you put it on you were so happy. It made you so happy I wanted to buy you one. You looked handsome. There it was today. All I could think about was you. I remember how sweet big Michael was with you. He played soccer with you in front. I think I was just too tired.

On the way home I was having one of those times when I cannot accept that you are not here.



I miss you, pffftt.

Dad

Dear Henry:

I was just walking home from the gym when I starting thinking about something. I used to think our lives were so hard when you were alive. No sleep, fear, pain. I didn't know then what "hard" is.

I am home now watching Charlotte's Web. Joe doesn't want to watch. Maybe some day. Hey, what kind of name is "Lervy," the Zuckerman's farmhand.

There is a funny grown up movie called, Annie Hall. In the movie Annie asks her new boyfriend, Alvy, if he loves her. Alvy says that love is too "weak" a word; he "lerves" her.

I lerve you.

Dad

Dear Henry:

I came across this story in a magazine today. It was good to read, but also hard. You should be playing soccer, too.

To Build a Baby

A quick genetic test is a godsend and a moral dilemma

By Fred Guterl
NEWSWEEK INTERNATIONAL

June 30/ July 7 issue — The extraordinary thing about Molly Nash is that she seems like a typical second grader in Englewood, Colorado. “She can be as stubborn as an ox,” says Lisa Nash, her mother, “and she smarts off now and then.” But like most 8-year-olds, she has redeeming qualities—a round, cheeky face, a toothy smile, brown bangs. She also takes dance lessons and plays soccer, and she’s a whiz in reading and math. “She’s a bit small for her age,” says Nash. “But not extremely small. There are kids in her class who are smaller.”

I have been meaning to give Molly's dad a call. I told you they came to the funeral. It was an amazing thing for them to do. It was not easy. I am so happy for them that everyone's doing okay.

The rest of the story talks about Dr. Hughes. He is an inspiration to me. He has had a difficult life but works really hard to be a good father to his sons. He also finds time to give so many families hope and he saves many lives. He is amazing. He came really close to saving you. We were so close. So close.

I love you big fella.

Daddy

Dear Henry:

We came out to the cemetery this morning. It was fun reading to you. I told Mom that I could see your expression when I read the part about Harry being banned from Quidditch for life. You would have given a great "Oh my gosh" look with eyes wide in disbelief. You had great facial expressions.

Mom sat on the grass next to you and I sat up on the bench and read out loud.



Speaking of the bench, we bought it. After we visited with you, Mom and I went into the cemetery office and met with a nice man who helped us order your headstone and buy the bench that is right next to your grave. You know how you loved to write your name on EVERYTHING. Well, guess what. We put your name on the bench. It will say, "Henry's Place." You were very good at writing your name on all of your possessions to make sure that your things wouldn't get confused with Jack's things.

We were able to order the headstone with everything on it. That makes it sound like a pizza. We will have Batman's bat signal and the Pokeball. This is the letter that let's us use the bat signal.



The Batman people's stationary is really cool. Check out what is on the back.



I asked the man at the cemetery if he knew what happened with the young boy who is buried near you. He told us that one day the boy was running a fever and his mommy brought him to the doctor. The doctor prescribed some medicine, probably antibiotics, and sent him home. He got into bed and went to sleep. When his mommy came in to see him in the morning he never woke up.

Take care of him, okay.

We want to have the unveiling around your birthday. It probably will be on the day after, which is Sunday, October 26. Mom wants to have the best party bags ever! Isn't that just like Mom. It is just like you.

Oh man, oh man. Do I ever miss you. I didn't cry or get too sad today. I just really feel how you are gone.

I love you, Henry.

Huuuuugggggggssssss (and tickles).

Dad a.k.a the Tickle Monster

p.s. a.k.a. means, "also known as"

Dear Henry:

This made me smile today.



I love you. Goodnight.

Dad

Dear Henry:

Tonight Jack told Mom, "I don't understand why God makes it that kids are at camp or school all day and parents are at work and they can't be together." Henry, these are one of those times that I, as a parent, was glad to be out of the room. Sorry, I'm just trying to be funny.

Clearly, Jack doesn't want to be apart from us. I know he is sad that he is apart from you. I don't exactly know what I would have said to him if I was Mom. You know I usually joke that I work to buy you guys toys. But I don't think this is the answer for Jack. There is something else going on in his head. I'll try to talk to him tomorrow. Nobody at his camp, the other campers (except for Matthew) or the counselors know about you. Do you think that plays into all of this?

Love,

Dad

Dear Henry:

I was clearing the table tonight after dinner and made a big discovery. I was looking at the surface of the table and saw "Henry" and "Henry" and "Henry." All over the table top was your name. Whenever you wrote your name on a piece of paper it made an indentation on the table. Jack and Mom came over and we all searched for "Henry's." Jack found a sentence that we all agreed says, "Henry Dad is burp."

I hope those Henry markings will always be there, but I know they won't. They're like you. Maybe we can put a pad on the table. Then we wouldn't be able to see the "Henry's." I guess this is one of those clear examples where we need to go on with things and live. A tabletop. Who'da'thunk it.

You know something. Whenever Mom was worried about one thing or another, like we missed a party or we weren't going to be able to go somewhere because you were sick or something, I always said, "don't worry, we have a lifetime." I don't think that is what people normally say in those situations. I know that I was saying this to give me and hopefully Mom confidence that it was really true. I think I would say it to you, too.

Mom is trying to put Joe to sleep and he is making a BIG fuss. I think it is time to call in the calvary - Me. I'll be back to write more soon.

Love,

Dad

Dear Henry:

I found this cool XM light-up pen to bring home for Jack. Psych!

One more thing that you would like about the place where I work are the vending machines. They have Pringles but I am not sure about Skittles. I asked Mom why you cannot buy Power Bars and Cliff Bars in vending machines. Doesn't make sense. The candy guys must be really strong and well organized to keep the healthy choices out of the machines. You liked chocolate Power Bars. Thank god. Mom and I were always exasperated by you not eating. We were worried that you'd starve to death. It almost worked out that way. I don't remember how many times you had to go to the hospital for malnutrition. It was a lot. Pediatricians always tell parents, "don't worry, they won't starve." They weren't talking about little boys like you who had stomachs being ravaged by graft versus host disease.

Hen, I wish you could check out this M&Ms site that Jack keeps visiting on the Internet. It has fun music and pictures. Jack even made a Japanese Monster Movie.

I love you and cannot wait to come out tomorrow. So far the skies are clear.

Love,

Dad

Dear Henry:

This morning was the first time that I dropped Jack off at the bus that takes him to camp. It is a new camp, not Beauvoir. On the way I kept thinking back to last summer and how you went to camp. You had a pretty good time if I am not mistaken. You were doing okay. This was before the whole almost dying thing in August . Your skin was getting better. I do remember that we went to the doctor a lot together because I was dropping you off or picking you up at odd times. We spent a good deal of time walking around the camp looking for your group. As always, you made good friends with the nurse. She was very nice and liked you a lot. You used to come to her office to take your pills and sometimes you would rest there.

I wasn't working last summer. Mom dropped you guys off in the morning on her way to work. Most days I would pick up you and Jack in the driveway after camp. Carpool line. I loved seeing you guys get excited when you saw the car. Then we'd hang out at home.

The nurse at Jack's camp called on Monday, which was his first day, to tell Mom that Jack had "suffered a head injury." I think what he got was a bump on that rock-hard melon of his. The camp even sent home a note about Jack's head. If Jack ran into a brick wall the camp would be smart to send a note home to the mother and father of the brick wall. Everyone is so worried about things. It is kind of like the man's email to me about the masks. I think I shouldn't have used the expression, "life or death."

Last year I got calls from camp or school letting me know that you needed to come home. Usually you were just too tired. I rode my bike to work yesterday. I wouldn't have been able to do that last year. I always needed a car nearby so I could get to you quickly. I liked being needed by you and rushing to get you as long as it wasn't too serious.

I am in a hurry to be with you now. I have wanted to get out to the cemetery but I am working and it isn't easy to get there. Tomorrow I am going out there with Mom. We have a meeting with the people there to talk about your headstone, the bench next to your grave and some other things. I'm bringing HPV: Order of the Phoenix.

Until tomorrow, Mr. Henry,

Dad

Dear Henry:

In life some things work out and some things don't. The big question is how hard to try to make things work that don't.

Here is something that worked very nicely.





Isn't it nice that Ari got to meet Suzanne. But now that I think about it he may have met her once when he joined you for a clinic visit. Did you know that because your birthdays are so close, he and you would have had your Bar Mitzvahs together at Adas Israel. That would have been some party. Ari told Linda and Mom that he wants to dedicate his Bar Mitzvah to you. He is a special person. You are lucky to have him as a friend. He and Rachel and Sid and Linda have been so good to you and to us. They are all very special.

And now here is something that didn't work out.

-----Original Message-----
From: Goldberg, Allen
Sent: Friday, May 23, 2003 3:31 PM
To: 'tbeddow@mmm.com'
Subject: The Marrow Foundation Dinner

Tom:

I wanted to introduce myself to you the other night at the Marrow Foundation dinner, but you left before I could find you. I wanted to thank you for coming to XM, and ask for some guidance with regard to 3M. I'd like to find out who is the right person to present the following.

When my son Henry was immune compromised after his bone marrow transplant, my wife and I struggled to get him to wear the 3M filtration masks that protected him from airborne bacteria. Two years post-transplant, Henry's immune system was weaker than it had been immediately post-transplant. The 3M masks, for us, meant life or death. Ever since Henry was first required to wear a mask in public I thought there could be an easier way to get him to wear it without the struggle. Clearly 3M can make the masks more fun and less frightening (to Henry and those he met in public) by imprinting them with cartoon and superhero characters and logos. For Henry, Pokemon characters would have made his mask as welcome a part of his wardrobe as his Pokemon t-shirts, Batman socks and Rugrats band-aids.

I'm sure you'll agree that 3M is in a unique position to help out the neediest patients and their families. Thanks for reading through this and I welcome your thoughts how best to proceed.

Regards,

Allen

-----Original Message-----
From: tfbeddow@mmm.com [mailto:tfbeddow@mmm.com]
Sent: Sunday, June 22, 2003 3:33 PM
To: Goldberg, Allen
Subject: RE: checking in

Allen, after carefully considering this idea the Vice President of our Medical Products Division has decided that we cannot pursue it at this time. The overwhelming backorder situation we have due to SARS and the anticipated stockpiling of masks against future outbreaks of this time have us totally focused on ramping up the supply chain. Frankly another key
element in the decision is liability. We are faced with 10's of thousands of frivolous claims that our masks did not protect workers from asbestos, silica and other materials. Logic of course tells you that any mask is better than none at all but that does not stop lawsuit abuse. The very sensitive areas of health testing of children and marketing to children would seem to create another opportunity for the trial bar. I know how personal this is for you and regret that we could not find a way to pursue your idea.

Wow, that isn't the answer I was hoping to get. Henry, this is sad for so many reasons. I don't know if this is the end of the idea of providing fun masks. I hope it isn't. I just need to think of another way to do it. I have someone really smart helping me with this and I think he can make it happen. I'll keep you up to date with how we are doing.

Hey, there is some good news on the Pokemon and Batman fronts. I already may have told you this but we can use the logos on your headstone. The people who needed to say "okay," did just that. We are going to meet with the man from the cemetery to get some of the details hammered out and they'll get to work soon.

Mom has worked hard to set up a foundation in your name, the Hope for Henry Foundation, to help kids and their families who are in the hospital having bone marrow transplants. To be honest, Mom has done most of the work and I haven't been as much help as I should be. I just throw out ideas, like getting photo booths (like the ones at the beach) for the floor so kids and their visitors can take photos of themselves. The friends can take pictures and leave them with the kid who is the patient. Then the kid who is stuck in the hospital can have photos of their friends around all of the time. Also, the kid who is in the hospital can take pictures of themselves with their doctors and nurses. These photo booths cost a few hundred bucks. I think we can get ones for Georgetown and Hackensack and Minnesota. I also want all of the kids to have XM radios so they can listen to XM Kids. I will work hard to make these things happen. Mommy is much more low-tech than I am. She wants to do nice things like get warm snuggly blankets for the kids.

A really good guy at work came to talk to me last week about a different foundation that sets up super cool home theaters at childrens' hospitals. He wants our company to help out. He told me how great it would make us feel to help out sick kids. He didn't know anything about you and about how well I know hospitals. I finally said, "You had me at hello," which is from a movie, called Jerry Maguire. It means that I was ready to help and he didn't need to "sell me." The funny thing is that Mommy and I saw Jerry Maguire not too long after you were born and we both cried all the way through. It wasn't a sad movie at all. It is just that there was a really cute little boy in the movie. That set off the tears. I remember thinking at the time that I wasn't going to be able to have my cute little boy for very long.

I wanted to tell you something. I have been taking some peeks at Harry Potter and they mention a kid who I believe must be the first Jewish wizard in all of the books, Anthony Goldstein. I'll be out to read to you soon. The weather is nicer now. There was a whole day without rain.

Miss you.

Dad

Dear Henry:

I need to spend more time telling you about the family and about good things. Sometimes I think I write too much about how sad I am and how awful life is without you. I know that you want us to have fun and here is some.



This is another one of those pictures that parents love but kids probably hate. It's cute now but I am sure Joe will think it is embarrassing when Mom or I show it to his girlfriend.

Joe can now say "bye" and it sounds like he is really talking. Normally he speaks in Joe language which is a few vowels and consonants away from being understandable. Mom says that Joe can say "Batman." I am waiting to hear it. The littlest man had a date and sleepover with Zhenny last night so Mommy and Jack and I could stay out super late. Joe was so excited to go to Zhenny's. He had a great time.

Sam Shoyer is sleeping over here tonight. Paula and Andy have so many kids that I bet they might not notice that he is missing. I better go set up the fort on your and Jack's bed for them.

I owe you a visit but I need a little cooperation from the weather. Too bad the rain can't wash away sadness.

Love you, my man.

Dad

Dear Henry:

This was your kind of night. We ran into friends (that's Emma Rose below with Jack) and there was a lot of excitement. One of the things that I love about you is the love you have for things and people and places. You were passionate. You got excited. You couldn't wait. You smiled. You danced. You were alive. You were magical. You love Harry Potter.

Clearly, Jack loves Harry Potter, too.









Tonight there were Bertie Bots, Butter Beer, Dobies, Harrys, Hermonies and maybe even Rons, though I didn't see any redheads. It was a party. It made me think back to the Harry Potter party that you and Jack threw for your friends. There was no special occasion; you never needed one. You and Jack decorated the house to make it feel like Hogwarts. We watched the first movie and everyone had a great time. Your friends came in costume. The signs are still up here and there. I think your room was Dumbledore's office.

We picked up our book and I made sure we got the CDs, too. So much of the past few years were spent in the car listening to Jim Dale read the Prisoner of Azkaban or the Goblet of Fire. I know how it will feel listening to this one. I'll enjoy it, but it will feel strange. It will feel sad.

I love you my Boy Who Lived. I wanted so much for the magic to work.

Dad

p.s. Jack is setting a record for staying up late.

Dear Henry:

The Moving Up ceremony began with everyone singing Hatikvah. I know that you know that Hatikvah means "hope." I desperately hoped that someone would say something about you but I knew that the day was about the 6th graders and about all of the kids, like Jack, who were moving up to a new grade. Jack looked incredibly handsome and grown up.



I just sat in the back fighting the urge to cry. I had to leave early to get back to work and I stopped by to say goodbye to your classroom.



There were photos of every one of your friends who will be in second grade next year. I am happy for them and I am sure you are, too.

When I got home I opened the mail and found an invitation for me and Mom. The invite is for a ceremony in Minnesota to pay tribute to everyone who died at the hospital between September and December. You were a fourth quarter loss. This is a ceremony where everyone will be expected to cry. I don't think we'll be going, but it was nice to be invited, nice that they remember you and nice that they think of us.

We will have a ceremony in October on your birthday to unveil your headstone. All of the lawyers have been very helpful giving us permission to use the Pokemon and Batman stuff on the stone. I think they'll start working on it soon. I keep you up to date with the progress.

Tomorrow is a big day. I am going to bring Jack into work and let him be on the radio again. Then we'll pick up Mom and go to the Harry Potter party. It isn't going to rain this weekend so I'll be coming by like I promised.

See you soon. I love you.

Dad

Dear Henry:

It has been a really tough morning. Mom is gone on business and Jack and Joe were really good, but I had a lot of trouble getting going. Today is the "Moving Up" ceremony at school. I am proud that Jack will be officially a first grader. All of your class will become second graders. I am very sad that you aren't moving up. This day is about the living and about the future.



You are going to be a part of my future because this goodbye is going to last forever and ever. Or at least as long as this "blog" company is in existence. There is always pen and paper.

God, I love you so much.

Dad

p.s. Good news. Mary Beth, the person I told you about who just had a bone marrow transplant, just engrafted. I sent a little treat to her husband because the people who take care of the patients need to be taken care of too. I wish I was still taking care of you.

Dear Henry:

Today is Father's Day. We saw Pop Pop Teddy at breakfast and Papa Sy at dinner. It was nice to see them. Mom told me that she understands that we are never going to have the "whole family" here for anything ever again.

Mommy and Jack and Joe and I went to the big boy park for a little while in the afternoon. I sat on the bench and leaned over and cleared the leaves and sticks of the brick in the ground that says, "We love Dad, Henry & Jack." For a while I just sat and watched Jack and Joe play. Jack was on the swings and went really high. Then I looked over at the field and watched the older boys play baseball. I hope all the dads watching their sons were proud of them.

After we finished at the park and ate some ice cream, Jack came with me to my office. He was on the Absolutely Mindy show on XM Kids for about an hour. Jack talked about birds and Uncle Stinky and the end of school. He was a little shy at first and then he felt more comfortable and had a lot of fun. You should have seen him talking. He would use his hands when he spoke. It was beautiful.





It is bedtime. Mom just tucked in Jack. As Mom was getting ready to leave, Jack told her that he had the most exciting day ever. He said that was because he saw an adult centipede, he made a paper mache volcano, he was on the radio, he has only four days of school left and it's Father's day.

It was an exciting day for me, but you know how sad it was, too. You made me a father. You also made me a good father. I love you for that.

Kisses,

Dad

p.s. Thanks for the shirt that you and Jack and Joe gave me.

Dear Henry:

Mom tells me your funeral was 6 months ago today. That was a really miserable day. The sun is finally out here.

Hugs and kisses.

Dad

Dear Henry:

Guess what. Only

Jack and I will be there at midnight to get the book. It is nice that the next day is a Saturday and we can sleep late.

I love you.

Dad

Dear Henry:

Jack brought home the yearbook.





Love,

Dad

Dear Henry:

I am the ace at putting Joe to bed. The secret: leave his pacifier and blanket in the crib so he is itching to get in. Pretty smart, huh. The other night I read him a book, then turned the light off and sat and rocked him in my arms. As I got him ready to put in his crib I started to tell him the story of Henry the superhero. It was a good thing it was dark.

It is a good story.

It's getting late. Six months are almost over. I wonder what the next six will be like. The only thing I know is that they'll be without you.

Love,

Your Dad