Here are some photos that I haven't put up yet. First is Joe's birthday and then Halloween.

Of course Joe's birthday was baseball. We went to this indoor place in Gaithersburg. Joe invited all the cousins and a lot of older kids.



We went to Aunt Abby's and Uncle Andy's again for Halloween. Mom is bummed that we aren't around to give out candy. We only trick or treat. This is definitely one of those times when you need to be in two places at once.



Your cousin Rachel made her "Pebbles Flintstone" costume and little Noah's clown suit. She is amazingly talented. She can paint, design, sew, cook, you name it. She will grow up to be whatever she wants to be. She could be the Jewish Martha Stewart, but I have a sense she'll be something spectacular. Because you two were born only 3 days apart I always think of you as having a special bond - it isn't anything on the surface. I think it will come out more later.

Joe wasn't much of a stretch. Jack was the Red Sox.

Mom and I were trying to figure out what to get Baby Max. Both of us thought that this would be a good gift.



But that baby doesn't look all that happy. Maybe Max should be Superman instead.



By Halloween he'll have all the big muscles he'll need to fill out this costume.

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.

You know how Mom had that great idea to get Harry Potter books for the kids in the hospital. She had another great idea the other day. She wants to get nice costumes and bring them to the hospital for Halloween. I remember the last Halloween when you and I trick or treated through the different departments at Georgetown. You weren't allowed to go out with the other kids so this was a good alternative. We had a good time going to Radiology and Physical Therapy and everywhere else. I don't think you were Batman. I think you were Anakin or some Star Wars character.

Speaking of Star Wars, Jack and Joe were both Darth Vader for Halloween. Anakin becomes Darth Vader in the last movie. It was called Revenge of the Sith. You would have liked it a lot.



Your brothers went to the dark side.

Here is a new photo of the day. It looks like you have a Halloween mask on your head.



Love you.

Mom just showed me this picture from last Halloween. Thought is was a great shot of your cousins and Jack and Joe.



Love you.

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.

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