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.

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.

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.

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!

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.

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.

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.

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.

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.

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!

Friday, October 10, 2003

This email went out last year today to all of our friends.

-----Original Message-----
From: Laurie Strongin []
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 piƱata 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

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."

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.