Letters to my son.
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| Dear Henry Letters to my son. |
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Sunday, October 26, 2003  Georgetown had a service for all the kids who died in the last year. Mom went and I stayed home with Jack who was taking a nap. Mom read something. She said it was very sad. There were too many names.    posted by Allen | Sunday, October 26, 2003 Saturday, October 25, 2003 We had the Hope for Henry Foundation fundraiser at Aunt Abby's house. A lot of people came. Lisa came all the way from New York. Val came from California. It was great being with all of our special friends. We were excited to have Cindy Bullens play music for everyone. Cindy has a daughter, Jessie, who died when she was a young. I am very sad for Cindy. Cindy told me that Jessie's birthdays are the hardest. Today was hard, but I need hard right now. I think that is why I want to go with Mom to Minnesota.  Cindy wrote a bunch of songs to say how she felt after Jessie died. She played them for us and talked about Jessie and everyone cried. It was sad but kinda perfect. It was a nice way for everyone to think about Jessie and to think about you and to think about their own kids and people they love. It was pretty loud so Michael, Rachel and Joshua stayed up late and hung out downstairs with all of the grown ups. Michael sat with me for a lot of the songs and that felt good. I think he had a good time and I know you would have enjoyed it.  We raised a lot of money from the concert for the Foundation. The other day the Moonbeam class at The Gan gave its tzedakah money to the Hope for Henry Foundation. A check for $2.48 came in the mail. Mom and I were really touched by this. It was very sweet of the kids.  The Foundation will help kids and families when they are getting new blood. We want to buy them fun things and do things for them to make them smile and not hurt as much. Remember when you got that soft grey blanket. I think a family gave those to everyone at Minnesota. We want to do stuff like that. posted by Allen | Saturday, October 25, 2003 Everyone came over this morning to recognize your birthday. It wasn't really a "celebration." Pop Pop Teddy, PaPa Sy and Nana were here. Aunt Jen and Uncle Dan flew in with Hannah. All of your DC cousins and Ari, Simon and Jake showed up. We had ballons all over the house that have "Henry Forever" printed on them. It was just like all of our parties but not really. After all of the kids ran around and played for a bit we gathered in the dining room for cake.  Mom got a beautiful cake. I asked if everyone if they wanted to share something they were thinking about you. Ari said, "Henry was brave." Simon said, "Henry was my very best friend in the whole world." Alex said, "He liked Batman." Someone said you were cool. Michael said that you made him laugh. Mom and I just listened and cried.  posted by Allen | Saturday, October 25, 2003 Friday, October 24, 2003 The Friday afternoon before your birthday was Jack's last T Ball game of the season. I was really busy at work but made sure that I left to watch the game. I hadn't seen any of his games. All of his friends were on the team, Jacob, Noah and David. David is really good. He is super smart and great at sports. He is a lot like Chuck. Speaking of Chuck, he is the real-life hero of a movie that Mom and I just saw. We saw it with Chuck and Cati and Rich (I don't know where Jill was, she was probably home with the twins). That was very cool and a little bit weird because we were sitting next to the people who were supposed to be up on the screen. There were actors playing Chuck and Cati and even a baby actor playing David when he was really little. The movie has some bad words in it so Jack and David probably won't see it for a while. There were even shots in the movie of their house and it looked a little like the real thing.  Jack's grounded out the first time up to bat. He was so upset (mostly because I was there) and I felt so bad for him. My heart was broken. Thankfully, he got a hit the next time up. In fact, he scored a run and when he came across first base he ran over to me and jumped up into my arms. I hugged him really hard. We both went from feeling terrible to feeling great in just a few minutes. It was awesome!  posted by Allen | Friday, October 24, 2003 Thursday, October 23, 2003 I came across this yesterday. I don't remember it. You used to bring home so much stuff from school last year. I guess this sums up your life during your last year. Even though you felt "Yicky" you were happy. That describes how I feel, too.  "Elegant" is a cool for word for you to know. You were an elegant young gentleman. I am so sorry that you couldn't go out and that you felt yicky. That's no life for a kid. posted by Allen | Thursday, October 23, 2003 Wednesday, October 22, 2003 Jack told Mom that he doesn't want to release the "Henry Forever" balloons on your birthday on Saturday. He feels it will be too sad. He says that it reminds him too much of when you went up into the sky. This morning Jack pointed out to me a very strange fact. Scrappy Doo is Scooby Doo's way younger nephew, but he speaks much better than Scooby. Scooby Rooby Roo. What is that all about? Jack is one pretty smart guy. I was going through more stuff in the basement. I never before read the text of this annual report of the Minnesota Red Cross that featured your photo. I am going to go back there with Mom next month.  posted by Allen | Wednesday, October 22, 2003 Thursday, October 16, 2003 Mom wants to dress up Joe as a cowboy for Halloween. Here is a kinda blurry picture of you wearing the vest that Joe will wear. You guys look a lot alike.  David Ortiz just hit his second home run of the post season. I am positive that the reason he is doing so well is because he was so nice to you. Good night pardner. posted by Allen | Thursday, October 16, 2003 Check out this incredibly neat business that Harry and Loree started, Golden Gate Biplane Adventures.  Way too cool. Gosh, you would have loved to take a ride. I showed Jack tonight and told him we'd go next time we are in California. Jack said, "I get to do this because Henry got to fly in Uncle Dan's plane," and I said, "Sure." I am so sorry that you were too sick to enjoy the special picture of the Blue Angels that Harry and Loree sent to you in Minnesota. It was so nice of them to send. They are great people and thoughtful friends. I'll post pictures on here someday so you can see Jack flying over San Francisco. posted by Allen | Thursday, October 16, 2003 Look what is happening on your birthday. Make A Difference Day on October 25, is a national day of lending a hand to others - a celebration of neighbors helping neighbors. I was in the gym at work and an announcement was playing on XM radio for this. I got very weak. Mom and I used to take such joy in making every day a "Make-a-Wish" day for you. Your Wish trip to Disney World was very special and I'll always remember how happy you and Jack were from the limo ride to the airport to the Buzz Lightyear ride in the Magic Kingdom.  You were the king of hugs.      When you got to go on the Buzz Lightyear ride 10 times in a row without waiting in line or when you were cruising around with your portable DVD player or when you hung out in the dugout with Cal Ripken talking about Pokemon or when David Ortiz gave you one of his bats or when you got to meet President Clinton and then played with his dog, Buddy or when you would get so many presents on your birthday, someone always would say, "Gee, that kid is so lucky." You were fortunate and you understood that. But I still wanted everyone to know that you really weren't all that lucky. And in the end, we didn't get the luck that mattered. Your cousins are coming over on the 25th. We'll go over to Stoddert and release balloons that say "Henry Forever." We'll make sure no birds eat them. Mom a.k.a. "The Queen of Party Bags" has outdone herself. You inspired Mom and she had a lot of fun doing it. I'll probably take pictures of everyone who comes over for your birthday to put up here. That will be terribly sad. It is funny because I thought your party last year, when it had to be just you and Jack with no friends or family, was the saddest thing ever. I never thought we'd be facing a birthday party without the birthday boy. I hope you know that one of my most favorite things ever was doing stuff that made you smile. I still see things and think "Henry would have loved that" or "Henry would have loved to do that" or "Henry would have really liked this person." I never needed the excuse of a birthday to buy you something, but Mom and I had a good time going overboard for your birthday all the same. Maybe I'll indulge myself and get you a little something for the 25th. I can leave it at the cemetery or something, I don't know. I'm listening to a song right now and the singer is singing, "I work day and night loving you." The days are starting to get terribly hard again. I don't know how to live without your hugs. 
posted by Allen |
Thursday, October 16, 2003
Sunday, October 12, 2003  Joe and I spent the perfect day today. We went bike riding all around. Whenever I tried to stop, Joe would say, "More." It was his first time on the bike seat. Then we went to the park and played on the swings and the slides. After that we went out for dinner together. He is a french fry maniac. When we got home Joe took a bath with a lot of "Bub-bles." We topped off the day with the brand new Lion King DVD and then it was time for bed.  Mom and Jack went to Baltimore for a sleepover with Debbie and Aaron, who came down from Philadelphia to meet them and go to the aquarium and the zoo. This is Sam Shoyer, Jack and you from the Baltimore Zoo last year. We went to the zoo and then we went up to Johns Hopkins for your PUVA treatment. It was strange travelling almost 3 hours round trip for a 5 minute office visit. I'm glad we added the zoo. Looking at this photo it is so clear to see how smiling came easy to you. I want to put up a whole group of photos just of you smiling. When we went to the zoo you had to wear sunglasses because of the photosensitivity caused by the PUVA drug, Oxysoralen. You were just one very cool dude.  Joe is very cute as he learns to talk. He calls penguins, "pengies." Whenever I am alone with Joe I think of you -- a lot. Last night I woke up in the middle of the night and could not go back to sleep. I kept thinking about you and panicking. I turned on music and tried to sing along so I wouldn't think the sad thoughts that I have about you. I wish Joe slept in a big boy bed so I could have crawled in and snuggled with him. I finally fell asleep at about 6 a.m. and Joe thankfully stayed quiet in his bed until 8 a.m. Mom and Jack get back today. Yeah!
posted by Allen |
Sunday, October 12, 2003
Friday, October 10, 2003 This email went out last year today to all of our friends. -----Original Message----- From: Laurie Strongin [mailto:lstrongin@starpower.net] Sent: Thursday, October 10, 2002 3:07 PM To: Friends of Henry Subject: behind the mask (again) Two weeks ago, we met with Henry’s transplant doctor, John Wagner, who was in town from Minnesota. Following an examination of Henry, Dr. Wagner made a recommendation that dramatically changed our lives. In recognition of the fact that the anti-rejection medications that Henry has been taking to treat his graft versus host disease (GVH) are placing him at an extraordinary risk for life threatening infections, Dr. Wagner advised that we keep Henry in isolation at home. He explained that Henry now is so immune deficient that we must follow more stringent infection control precautions than we did just after transplant 2 1/2 years ago when Henry's immune system was wiped out by total body irradiation and chemotherapy. Dr. Wagner’s ballpark figure for how long Henry must remain in seclusion is 9 months or so. Although this all feels like a tremendous leap backwards, Dr. Wagner feels relatively confident that if we can keep Henry infection-free and out of the hospital, then he has an excellent chance to overcome his GVH and fully recover. This is something we were starting to think was outside the realm of possibility, considering only 6 weeks ago he was on a ventilator in intensive care. So we had the unbearable task of explaining to Henry that he can no longer attend the school he loves, go to public places – movies, ice cream parlors and Cactus Cantina (his favorite restaurant) – or have any of his friends over to play. Sadly, Henry’s 7th birthday party planned for later this month has been cancelled; the Pokemon 4 and Harry Potter movies that he just couldn’t wait to see will just have to wait until they come out on DVD; and there will be no trick or treating this Halloween for the boy who was all ready to hit the streets with his light saber as Yoda. The only mask Henry will be wearing for awhile is a surgical one to protect him when he does venture out to his all-too-frequent doctor’s appointments. For the next 9 months, our challenge is keeping Henry engaged, educated and entertained while shut in. He already acutely feels the loneliness of being cutoff from his friends, and we are investigating various videoconferencing options to keep him connected to his classmates at JPDS. As for other encounters, we have to weigh the psychological benefits against the physical risks each time, which is a challenge we’ve never been able to get used to no matter how many times we face it. Aside from Henry living as a virtual prisoner in his own home, this newest heartbreak affects the rest of us as we are no longer able to do life’s more enjoyable things together as a family. We had to tell our nieces and nephews that they could not come over to celebrate Joe’s 1st birthday last Sunday; our evening family walks to Max’s Ice Cream are no longer an option; and we are stuck with the drive-thru at McDonalds as the only restaurant outing that doesn’t pose a great risk. We even had to let our nanny go because she has a young daughter who she would bring to the house when she cared for Joe. So far the benefits of being such a high-risk family are that we will be the first ones taken when flu shots are given, and the Washington, DC government singled out our street to be sprayed for mosquitoes – a serious danger considering the recent West Nile Virus and malaria outbreaks in our area. We are doing our best to make lemonade here and given our years of practice things don’t taste as sour as they once did. As our friends, we ask that you help us keep Henry healthy. Many will remember the drill when Henry first returned from Minnesota after his transplant. It’s mostly common sense: no one with even a trace of a cold or cough can come inside our house, shoes must be removed at the door and conscientious hand washing is imperative. In addition, we have two requests: If anyone knows a great nanny who could mostly take care of Joe, please let us know. And though Allen cares for, and now teaches, Henry full-time, there are moments when he must go out, so we’d like someone who can also engage Henry on occasion when Allen isn’t at home. We need to find help as soon as possible. Meanwhile, we haven’t forgotten about Jack, who thankfully is fully engaged in all-day kindergarten. Also, if you can help us make Henry’s 7th birthday on October 25, a special one, it would be great. I’m going to put a piñata out on our front porch this weekend, and we welcome you to come by and put cards in it. When Henry whacks that thing open on his birthday (with the help of Jack, and maybe even Joe), we know this will help him feel connected to all of his friends. To mail him a card, you can send it to our home at the address below. If you are struck by any other creative idea that might make this day memorable for Henry, please let us know as we want this precious birthday to be a great one. Thanks for being by our side as we continue our ever-bumpy ride. With love and thanks, Laurie, Allen, Henry, Jack and Joe
posted by Allen |
Friday, October 10, 2003
Monday, October 06, 2003 Mom wanted me to scan this in. You wrote her this note last year. We were just looking at a lot of stuff you did only one year ago. It says, "I really love Mom."  posted by Allen | Monday, October 06, 2003 During a break from services, Mom and Jack and I went to Georgetown to drop off band-aids. The clinic was super busy. Dr. Gonzales was there. She just had a baby named Sophia. Mommy and I figure that she was two months pregnant when you died. Everyone sat around talking about you and how much we all miss you. I asked Dr. Gonazales if she remembered two years ago when you were in-patient at Georgetown and Mom had just given birth a few blocks away at Sibley. I lobbied her hard to discharge you so you could go see Mom and your new baby brother. We got you out. A few weeks or months back I posted the photo of the five of us on Mom's hospital bed at Sibley. Whew, our life was pretty dramatic, wasn't it. What I wouldn't give.  Your life-sized Superman paper mache is in one of the exam rooms at Lombardi. I hear it is a favorite of the clinic kids. posted by Allen | Monday, October 06, 2003 Today is both Joe's second birthday and Yom Kippur. It was hard to sit in synagogue and ask for forgiveness. I felt like I shouldn't be the one saying I'm sorry. I wore your kippah to shul. When Mom and I got married, we printed up kippot and on the inside it read, "A Blessing on Your Head, The Wedding of Laurie and Allen." Too bad you could not have been there. It was a great party. You would have had a blast.  Mom, Jack and I went to the kid's service upstairs. It was in the same room where you, Jack, Mom and I went last year. I remember so well how you volunteered to help lead the Shofar blowing part of the service. You gave the Shofar blower instructions, "Tekiah, Shevarim, Teruah, Tekiah, Tekiah Gadolah." You were so proud of yourself and we were so proud for you. It is an incredible memory for me. I will never forget you in your sports jacket and kippah -- totally the center of attention, loving it and doing a great job.  When Mom and I were sitting in the main sanctuary last night I wasn't thinking back to your funeral. I was thinking ahead to your Bar Mitzvah. I was thinking how proud Mommy and I would be watching you on the bimah.
posted by Allen |
Monday, October 06, 2003
Notice the part about Jack teaching the kindergarten class about whales. Cool, huh.  posted by Allen | Monday, October 06, 2003 Sunday, October 05, 2003  
posted by Allen |
Sunday, October 05, 2003
Saturday, October 04, 2003 I wrote this last Thursday, but I didn't get a chance to put it on here for you. What an interesting day. I think I told you early last week that I wasn't feeling so great. I went to the doctor today and Mom took Jack to his doctor because he wasn't feeling great either. I was on my way to Morgan's to pick up my medicine when Mom happened to call me in the car to let me know that Jack had a prescription called in there too. As it turned out we were getting the same antibiotic. A happy coincidence, I guess. Whenever I think of drugs I think of you. It is hard not to. It was such a big part of our lives.  When I was waiting for the prescriptions to be filled Barry asked me how I was doing. I hadn't seen him for a really long time. Without thinking about it I just answered, "you know." And Barry said, "No, I don't know." But you know what, he really did. Let me explain. I said, "We're sad." And then he said to me that he knows what it is like to lose a child. I was a bit shocked. I never knew. Barry said that his son died six years ago. His son was twenty-two. Barry then told me that he thinks about him every second of every minute of every day. When he told me this his eyes looked like my eyes and his face looked like my face. He told me that when he thinks of his son he remembers him when he was a little boy, not the grown up he had become. I felt so sad for him. I now understand why he was so affected by your death. You know something pretty cool. The Twins are in the playoffs.  I still have the awesome bats the players gave you. They're leaning right next to my side of the bed. One day you were going to be big enough to use them to swing for the fences. Mom was invited by the National Marrow Donor Program to come back to Minneapolis for a meeting next month. I think I might go with her. It will be strange being back where you died almost one year later. It may be good for me. I was reading Thursday Thoughts from school this week and there was a notice about the 2nd Annual JPDS Book Fair. All of a sudden I remembered the 1st Annual. It was the night before you and I left for Minnesota. I bought you a bunch of Star Wars game and puzzle books for the plane trip. I went to the bookfair alone with Jack so we could spend a little time together before we'd be apart. Actually, I didn't ever think you and I would be gone for too long. We were just going for a quick visit for the doctors to fine tune your medications. Boy, was I wrong. If I go with Mom I am sure we'll stop by all of our old favorite places, like toy store and bookstore in Lake Harriet, and of course the Mall of America. There was a story in the Wall Street Journal newspaper yesterday about the Mall of America. It is 10 years old now, just a little older than you. This is what the writer said, Better to spend one's money at Al's Farm Toys (W370), the best store in the whole place. It is filled with tiny, exact replicas of farm machines made by John Deere and CAT, such as Tractor with 590 Round Baler, or a Land O' Lakes long-haul semi. They even have socks with small green tractors embossed on them.  That is the store where I bought Papa Sy the sign for the garage in St. Michaels that says, "Farmall Tractor Parking Only."
posted by Allen |
Saturday, October 04, 2003
The other day we were riding in the car down Oregon Avenue or Street, I don't know which, and Jack said, "I wish I wasn't famous for Henry being dead." Mom said she understood and felt the same way. This was in the paper last weekend. Your good buddy Lisa wrote it. The neat thing for me is that Lisa wrote about one of your doctors and my boss in one story. They are both incredible heroes. I didn't work that much when you were really sick. These guys work very hard during very difficult times, and they have incredibly important jobs. It is hard for people to truly understand how hard it is for them. My boss not only takes care of his wife but also is responsible for all the people at XM. That's hundreds of people. He gave me a job after you died. I love my job and the people I work with very much. Even with how much I love Mom and Jack and Joe, I don't know what life would be like if I had to deal with the sadness of losing you without having such a great job. It makes me feel good each day.  LIFE'S WORK For Some, a Job Puts a Life in Perspective By LISA BELKIN Nobody on his deathbed ever said, 'I wish I had spent more time at the office.' " In the years since Paul Tsongas first gave that explanation for leaving the Senate, his words have become a slogan for a generation seeking balance. Whenever he is quoted (and a Google search shows there are any number of variations of that quotation) it is to remind us that a crisis can quickly put work into perspective, unmasking it as unimportant. I have spread that gospel myself in this space. And I have heard from countless readers about how the pressure of a life crisis has made it impossible for them to work. But I have also heard from others for whom the opposite is true. A brush with catastrophe, they say, does not make them run away from the office, but toward it. Under the spotlight of mortality, their work is illuminated as life-affirming. Hugh Panero has come to understand this. His story began with work. He is the founder of XM Satellite Radio, now a 101- channel service, which was launched, literally, in May 2001, when the XM satellite was sent into space from a platform in the middle of the Pacific. Mr. Panero's wife, Mary Beth Durkin, was unusually tired on that trip and soon after the family arrived home, they learned that the cause was leukemia. Becoming paralyzed at work, he explains, was simply not an option. There were practical pressures; the success of the company determined the continuation of their health insurance. And there were emotional ones; the fledgling company was the vehicle for their dreams. Ms. Durkin has been through chemotherapy, and, most recently, a bone marrow transplant. (To "meet" her - and to be inspired to be a marrow donor - go to the Web site www.teammbwins.com.) Along the way, Mr. Panero found that he was better at his work when a crisis loomed. "You really don't have time to deal with ego issues," he said. "You become very lucid. Your decisions become much clearer." Sometimes, a crisis at home can teach you how much you are needed at work. Several years ago, I interviewed a researcher who had pioneered an experimental genetic test. At the time, only he could perform the steps that might save the life of one dying boy. The researcher's own wife was battling cancer during the months that he worked to help this child. Her funeral was on the same day as a crucial, time-sensitive step in the process. His need to help, to work, proved even greater than his grief, so he was in his lab, as scheduled, hours after he buried his wife. (For the whole of this haunting story, go to www.hsg.org.) Sometimes, though, what you learn is not how much your work means to others, but how much it means to you. Laura and Dean Wellington founded their computer consulting company, Wellington Consulting, 15 years ago, just before they were married. Cancer of the small intestine was diagnosed in Mr. Wellington four years ago, just after their fourth child was born. As the cancer took her husband's strength, and, near the end, his mind, Ms. Wellington took the company reins. When Mr. Wellington died last year, his wife went right back to work building what they began together. "I turned to my work as a way of getting me through," she said. Friends wonder why, having learned that life can be short, she doesn't just sell the company and move on. "Yes, I do have an increased awareness of the value of life and the value of time," she says. "But I also have an increased awareness of the value of work. This work was part of him. It was part of our life together." Ms. Wellington is certain that her husband would understand. Hugh Panero clearly understands. And I think a young woman named Jessica Grace Wing would have understood, too. Ms. Wing died of colon cancer this past summer, less than a week before her 32nd birthday and three weeks shy of the Off-Broadway premiere of "Lost." Ms. Wing wrote the music for the play, and for months she took her work, on her laptop, along to chemo treatments. As she grew sicker, she vowed to work 90 minutes a day for as long as she could. She finished her final composition for the musical two days before she died. (There is more information about her life and work at www.jessicagracewing.com.) The day before her death, Ms. Wing listened to a taped rehearsal of her music. Her father told her hometown paper, The Tucson Citizen, that work brought his daughter satisfaction to the end. "Now," she told him, "I can really say that I am a composer." Copyright 2003 The New York Times Company
posted by Allen |
Saturday, October 04, 2003
We are inviting people to Aunt Abby's house for a concert for the Hope for Henry Foundation. This is what we are going to send out. This benefit concert, on what would have been Henry's 8th birthday, launches the Hope for Henry Foundation which will improve the lives and nurture the spirits of children and families living with Fanconi anemia and other life-threatening illnesses. The Foundation will continue to spread the magic that Henry brought to the world during his short life. Please join us as we welcome recording artist Cindy Bullens for this stop on her "living room" tour. Cindy first broke onto the scene back in the 70's as a backup singer with Elton John, appearing on his monster hit, "Don't Go Breakin' My Heart." In 1978, Cindy was nominated for a Grammy Award for her vocal performance on the Grease film soundtrack. She was nominated for a Grammy in 1979, for her own single "Survivor". Later in her career, Cindy lost her 11 year old daughter Jessie and was inspired to release an album entitled Somewhere Between Heaven and Earth, which is described as "a heart-rendered requiem for Bullens' young daughter who died of cancer in 1996, though it's largely about hope for the living. .... Bonnie Raitt and Beth Nielsen Chapman sing along on the soulful anthem "Gotta Believe in Something," and Bryan Adams guests on the title track; Lucinda Williams, Benmont Tench, and Rodney Crowell also contribute. Bullens' voice and guitar simply chime with hope throughout the album. She has never sounded better." Because this is an intimate "living room" performance, space is limited. We ask that you contribute a minimum of $100 per couple to attend. Like PaPa Sy said at Rosh Hashanah dinner, you'll be in the room with us. posted by Allen | Saturday, October 04, 2003 |
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