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

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