Monday, August 25, 2003

When we hiked we sang songs. This was my favorite.

SpongeBob SquarePants
F.U.N. Song

(Speaking Part)
Spongebob: It's not about winning, it's about fun!
Plankton: What's that?
Spongebob: Fun is when''s kinda...sorta like a...
What is fun?? HERE...Let me spell it for you!

F is for Friends who do stuff together.
U is for You and me.
N is for Anywhere and anytime at all.

Sea Creatures:
Down here in the deep blue sea!

F is for Fire that burns down the whole town.
N is for No survivors when you're-

Plankton! Those things aren't what fun is all about!
Now, do it like this,
F is for Friends who do stuff to-

Never! That's completely idiotic!

Here, Let me help you...
F is for friends who do stuff together.
U is for You and me, TRY IT!

N is for Anywhere and anytime at all.

Sea Creatures:
Down here in the deep blue sea!

Wait...I don't understand ...I feel all tingly inside...
Should we stop?

No! That's how you're supposed to feel!

Well I like it! Lets do it again!


Spongebob & Plankton:
F is for Frolic through all the flowers.
U is for Ukelele.
N is for Nose picking, chewing gum, and sand licking.
Here with my best buddy.

(Laughing part)

Sea Creatures:
Down in the deep blue sea.

Of course my favorite part is when Plankton sings. Joe was a good little hiker. He would not sit in the backpack. He insisted on walking. That is one of his words, "walk." Joe is like a puppy who brings his leash to you to let you know he wants to go outside. Instead of a leash, Joe brings you his sneakers or puts them on himself. He is very determined. He does this no matter how early it is in the morning or how dark and late it might be outside.

Jack became a "Junior Park Ranger." We went to a hike with a Ranger who taught us a lot about the place we were staying. It was called, Skyland, and it is a lodge in the Shenandoah National Park along Skyline Drive. We took you there before. It is most beautiful in the fall when the leaves change color.

When we drove in it was night and we kept track of all the animals we saw along the road:

(1) Owl
(7) Racoons
(2) Deer

and over the course of the weekend we saw more deer, a ton of beautiful butterflies, caterpillars, tadpoles, grasshoppers, fish and a bunch of bugs. What we didn't see were bears, but someone we met saw a mommy and 2 cubs.

Yesterday when we were driving along Skyline Drive, I even spotted my doctor, Dr. Parker, who was riding his bike. He is in AMAZING shape. Those hills were really hard to drive in the car; I cannot imagine how he did it on a bike.

We took 2 hikes, one to a waterfall and one to a place called Stony Man mountain. On the way up Stony Man we crossed the Appalachian Trail. I always wanted to hike all or part of that with you one day. It goes from Georgia all the way to Maine. Maybe I'll do it with Jack and/or Joe and/or Mom some day.

F is for friends who do stuff together. U is for You and me

Yesterday was the anniversary of the "Day You Almost Died." One year ago Mom and I thought we lost you. Mom felt it yesterday. I believe it. I can feel things like that now, too. Sometimes I get sad and cannot figure out why and then Mom reminds me that it is the anniversary of something or another.

For some reason I had it in my mind that "The Day You Almost Died" was August 28. But that is the anniversary of Martin Luther King's "I Have A Dream" speech. That is a better thing to remember for August 28.

August 24 and December 11 are new dates which will live in infamy (that means being remembered for a bad thing) for me.

-----Original Message-----
From: Laurie Strongin []
Sent: Monday, August 26, 2002 1:42 AM
To: Friends of Henry
Subject: Worst Yet and Hopefully Ever

On Saturday morning we almost lost Henry.

At 10:30 a.m. Allen finished giving Henry his morning medications upstairs in our bed and left to pick up his father who had just flown in from Alaska. Henry was very groggy (as were we) from being up all night with uncontrollable diarrhea and settled into what appeared to be a mid-morning nap. I checked in on him and went downstairs to continue playing in the basement with Jack and Joe. For some reason, motherly instinct, whatever, about 40 minutes later I came back upstairs just to peek in on him again and that is when our world fell apart and I found myself alone in the single worst moment that anyone should have to experience.

Henry was motionless, his body was deep purple, his eyes had rolled back in his head and he did not appear to be breathing. The rising and lowering of his scarred but proud chest was absent. I screamed at him to get up, to breathe, to talk. Nothing. I shook him. Nothing. I screamed and fell to the floor. I called 911, then our neighbor to come and take care of Jack and Joe, and Allen in that order. I told Allen, who was 20 minutes away in Maryland still in the car with his father, that I believed Henry was dead or close to death and that he should meet me at Georgetown Hospital. I won't even pretend to admit that I kept my calm, but through the chaos, I did what I had to do. Henry was either dead or near death and I was shouting at him to wake up, at the 911 operator to get us help, at my neighbor to come quick and to Allen that I didn't know where he was and I was alone and our boy was dead.

Less than 2 minutes passed before a DC police cruiser pulled up to the house. A policewoman quickly assessed the situation and decided that we did not have enough time to wait for EMS workers to arrive. Henry’s pulse was barely registering. We wrapped Henry in a blanket and raced down to the hospital only a few blocks away in their squad car with its siren blaring. It was surreal and scary and insane as we rushed through the Georgetown Hospital ER doors to the awaiting team of doctors, nurses and techs who grabbed Henry, threw him on the table and got to work. I didn’t know if he was dead or alive.

Meanwhile, Allen was running lights and careening around the beltway and down Canal Road at speeds that would make the most aggressive driver blink. While still 5 minutes out, he got a call from the Georgetown ER asking how far away he was. They explained that he should focus on getting there as quickly as possible to help me make certain "difficult decisions." This was the first sense that he got that Henry might still be alive.

In the ER, a breathing tube was stuck down Henry's throat; IV's were inserted into both arms. The doctors and oxygen and drugs went to work. Henry’s purple color quickly changed to pink. It was determined that Henry was "seizing" and was given large doses of sedation to stabilize him. The faces in the ER, to our relief, were very familiar. In addition to the Hematology/Oncology folks, who see Henry a few times a week and had been alerted to his emergency status, the ER Attending Physician just happened to be the mother of one of Henry’s friends from camp. Not only did she know Henry and us, but she was exactly the kind of doctor you want running the Emergency Room team that was going to save your son’s life. She was calm and confident and that gave us confidence that he’d make it.

An x-ray was taken and tossed up on the wall. The tech stared in disbelief at the amount of trauma he saw. “What has this kid had done to him,” he asked. I stopped sobbing long enough to rattle off “tetralogy of Fallot” repair of the heart, a lung biopsy, two liver biopsies, two Hickman catheters, a g-tube; and then prayed that despite the length and brutality of that list, they could still do everything they could to keep this special boy going. He might be really sick, but just one day before he saw a movie with his two best friends and left me a voicemail message to let me know how happy he was and how much he loved me. Henry was looking forward to 1st grade in a week and had been so excited to pick out his school supplies at Target a few days earlier. He wasn’t ready to die and we weren’t ready to lose him.

After the x-rays, CT scans, spinal tap, and blood and urine cultures were done, we were transferred to the Pediatric Intensive Care Unit where we are still. He is stable enough that they were able to remove him from the ventilator today. No-one knows how long Henry’s brain was deprived of oxygen and we feared he may have sustained some kind of damage to his brain. When they removed the breathing tube, we smiled a lot (while crying a little to ourselves) after Henry spoke his slightly slurred first words and answered our battery of “tough” questions about dates and people and places. We should know there is no way Henry is going to forget how many days until school or weeks until his birthday.

We still don’t know what stopped Henry from breathing and he, and we all, are scared that until we figure out why this happened that it could happen again. For the first time, Henry and we talked about his fear of dying and specifically of not being able to breathe. We cannot shelter him from the reality of that possibility, so we’ll stay focused on what we can do to try to ensure that that doesn’t happen. Even though I have feared the loss of Henry almost every day since he was born almost seven years ago, my defenses have always been sufficient enough to disallow me from really understanding what the moment of that loss would be like emotionally, spiritually, physically. Now I know and it’s so much worse than I could ever describe. So much so that I can’t get out of my mind the picture of how Henry looked when I found him and can’t stop thinking about what’s coming. All I can say is that I don’t think I can ever do that again, but then, again, I’ll do what I have to and do it the best I can.

Thankfully, with all of the yelling, police cars and drama upstairs, down in the basement Jack doesn’t seem to have heard anything that happened. Power Rangers and Digimon re-runs were obviously a lot more engrossing. Jack is now spending the week at the beach with my sister, her husband and their kids, blissfully oblivious to the horrifying turn our life recently took, as he should be. He’s only five.

Prior to this episode, Henry spent the end of July and early August as an inpatient here at Georgetown, where he was treated for a myriad of problems related to the chronic graft versus host disease that is a complication of his bone marrow transplant. We continue to face a tremendous challenge fighting the cGVHD, which affects his skin, his gut and his liver -- but for right now we’re overjoyed just to sit at Henry’s bedside watching his blankets rise and fall with each precious breath.

You started school on time. You went to the first day with the rest of your classmates. You knew that you had come very close to dying. We were driving in the car around Ward Circle at American University when I first said to you,

You are 'The Boy Who Lived.' Just like Harry Potter.

You never appeared too uneasy about having almost died. You really liked the idea of being like Harry Potter. That may have helped a little. Remarkably, you took it all in stride.

On our way back from the mountains this weekend we saw all of the parents dropping their kids off at Georgetown to start the new school year. They were moving into the dorms and everyone looked really excited. I wanted so much to drop you off at college... to carry boxes of your stuff into your dorm and watch the smile on your face as you met your new classmates. Mom always worried about Kindergarten and I was working on college. She knew what was going on. I guess being clueless served me well then, but maybe it is making every day now a little harder.

I had a dream. The other night I dreamt that Grandma was alive when you died. When you died I remember thinking, "Well at least Grandma didn't have to experience this loss." There was no silver lining visible when you died. That was about the only thing that I could think of as an okay thing. Not that you died, just the timing being a few months after Grandma.

Got a lot to tell you about the weekend in the mountains.

You know how much I wish you were the boy who lived and lived and lived.

Friday, August 22, 2003

Yesterday I was lucky enough to find some time to go downstairs at work and catch Todd Snider give a concert. He, you will remember, is the guy who sings "Beer Run." I explained to him that you and Jack like to sing along and that song helped you learn how to spell. He is a really nice guy.

Beer Run
by Todd Snider
New Connections

B double E double R U N Beer Run
B double E double R U N Beer Run
All we need is a ten and a fiver
A car and a key and a sober driver
B double E double R U N Beer Run

A couple of frat guys from Abilene
Drove out all night to see Robert Earl Keen
At the KPIG Swine and Soiree dance
They wore baseball caps and khaki pants
They wanted cigs and so to save some money
They bummed one off a hippie that smelled kinda funny
Next thing they knew they were both really hungry
And pretty thirsty too

B double E double R U N Beer Run
B double E double R U N Beer Run
All we need is a ten and a fiver
A car and a key and a sober driver
B double E double R U N Beer Run

They found a store with a sign that said their beer was the coldest
They sent in Brad cause he looked the oldest
He got a case of beer and a candy bar
Walked over to where them registers are
Laid his fake ID on the counter top
The clerk looked and turned and looked back and stopped
He said "Boy, I ain't callin' the cops,
But I am keepin' this card"
The guys took it hard

B double E double R U N Beer Run
B double E double R U N Beer Run
Oh how happy we would be
If we had only brought a better fake ID
On a B double E double R U N Beer Run

They met this other old hippie named Sleepy John
He claimed to be the one from the Robert Earl song
So they gave him the cash, he bought 'em some brews
It was a beautiful day out in Santa Cruz
They were feelin' so good it shoulda been a crime
The crowd was cool and the band was prime
They made it back up to their seats just in time
To sing with all their friends
The road goes on forever and the party never ends....

B double E double R U N Beer Run (Beer Run)
B double E double R U N Beer Run (Beer Run)
All we need is a ten and a fiver
A car and a key and a sober driver
B double E double R U N Beer Run (Beer Run)
B double E double R U N Beer Run

I've got the best job. I feel really fortunate.

Tuesday, August 19, 2003

I saw Mary Kate and Ashley on the cover of a magazine.

They look very grown up now. I have to make sure when I write to you that I keep track of the fact that you'd be getting older. I look forward to talking to you about older boy stuff when the time comes. Even though we called you a little man, you knew how to be a kid. It is important to be a kid -- to think like a kid, act like a kid and play like a kid -- when you are a kid. I guess what I am trying to say is that there is no rush to grow up. Being a grown up is hard. Being a kid is fun.

Seeing the magazine made me remember when we were in Minnesota for your transplant. Because you loved Mary Kate and Ashley so much I drove over to the Mall of America and shot video of them when they visited the Mall to promote one of their movies. There were thousands of people who came to see them. It was a madhouse. I came back to the hospital and we sat together and watched the video I took. I should have tried to get something autographed for you. I miss being able to do things like that for you. Make every day special, right.

The first anniversary of the day you almost died is coming up and the start of school. Both of those days are going to be hard. Joe knows how to say the words "happy" and "sad." Still no breakthrough on "Henry," though. We'll keep working on that.

Sunday, August 17, 2003

Guess where we were this weekend. That's right, St. Michaels. I went with Uncle Peter to see their new house. You would love it. Jack and I took the Oxford Ferry. We went out in the Tashmoo. We had friends sleep over. We went to the Crab Claw for dinner and went swimming in Nana and Papa Sy's pool. It is late so I'll write you tomorrow and tell you a little bit more about who was there and what we did. Needless to say, I had fun but missed you terribly.

I love you so much.

Friday, August 15, 2003

As promised, I drove HSG out to see you after work. I got that sucker up to almost 60 mph on the road that leads up to the cemetery. Vrrroooommmm. That was fun. After I sat with you a while and said hello to Grandma I went for a really long ride. I motored through Rock Creek Park past Milkhouse Ford and up to The Awakening, which is right near the Jefferson Memorial. I am usually in a rush to get somewhere but tonight I just rode and rode and didn't care what time it was or where I was going. That felt really good.

Seeing you was nice. How do you like your bench. They are working on your headstone. I hope it comes out right. It has to. I gave your little marker a kiss and laid down on the grass with you until the gnats drove me off (totally not fair -- the cemetery should be a gnat free zone). The wasp nest is very active. I took more pictures of it. Here is me with HSG, the bench and you. The grass has grown in nicely.

I am going to get up early tomorrow and go meet Mom, Jack and Joe at St. Michaels. Jack is riding his bike like a pro now. He can ride on the street out in St. Michaels. Maybe we can ride to town. I'll get a picture of Jack on his bike up here for you to see.

I am really tired. Yawn. I am going to go to bed now. I miss you so much Big H.

Thursday, August 14, 2003

I went to the Georgetown clinic on my way into work this morning. I brought over bags of band-aids, Batman and Barbies. The band-aids will be for Henry's Toolbox and the Batman action figures and the Barbie dolls will go into the treasure chest. I really miss that hospital. A lot. I know they miss you.

When I was in the office I noticed that Suzanne has a big photo of you over her desk. It was a picture that you and I emailed her from Minnesota. You were wearing a bag for a hat. You were being super silly. Suzanne told me she was thinking of all of us this weekend because she was at the beach in North Carolina listening to her CD of your favorite songs that we gave everyone after the funeral. Suzanne moved out of our neighborhood over to Virginia. It was very nice and at the same time very sad to see everyone.

This is a song that I was listening to at the beach last weekend that made me think of you.

After You're Gone
Written by Iris Dement.
From "Infamous Angel", © 1992, Warner Bros.

There'll be laughter even after you're gone.
I'll find reasons to face that empty dawn.
'Cause I've memorised each line in your face,
And not even death can ever erase the story they tell to me.

I'll miss you.
Oh, how I'll miss you.
I'll dream of you,
And I'll cry a million tears.
But the sorrow will pass.
And the one thing that will last,
Is the love that you've given to me.

There'll be laughter even after you're gone.
I'll find reasons and I'll face that empty dawn.
'Cause I've memorised each line in your face,
And not even death could ever erase the story they tell to me.

Oh, how I miss you.

I forgot about the face you used to make. Remember how Mom or I would say "Make your face, make your face," and you were so quick to please us. You'd scrunch up your face and we'd all laugh so hard. You were so funny.

I looked in the kitchen this morning for the wall where we would measure you and Jack and mark your progress. It was painted over. Bummer. I used to cheat to help you feel like you were making progress. I did it for both of us. You were a big man to me.

Wednesday, August 13, 2003

This is us sleeping together. You certainly were a cute, snuggly little peanut when you were a baby. Look at you. I think Mommy and I were pretty scared back then. I think we lived with being scared then the same way we live with being sad now.

You were so small I held you in the palm of my hand and lifted you up over my head and flew you around. I think doing that with you early on is why you loved wrestling and rough-housing and jumping and going fast and being fearless. Joe is just coming around to wanting to play airplane or Superman or whatever it is when I lay down and hold you up high on my outstretched legs.

This picture of us napping was taken at Nana and Papa Sy's old house in Annapolis. They had this house before they found the one in St. Michaels. You came here for your first Thanksgiving right after you were born. This was probably from that holiday.

I am going to bed now. I've got one of your bears with me. It isn't the same as you. I love you little man.

Good night.

Don't Mom and Joe look happy. This is from Rehoboth Beach last weekend.

I ordered this Henry Strongin Goldberg license plate back in December. It finally came in last week. It only took 8 months and 5 trips to the Department of Motor Vehicles. Hen, I gotta be honest -- sometimes I wonder why we live in Washington. The easy things get hard in this town. But we'll never move.

Finally, Mom will be able to realize her dream of flying down the road with you on the scooter. That will make it all worthwhile.

Okay, close your eyes.

Now open them. How psyched are you. This was down at the beach. A Pringles vending machine! A marriage of two of your greatest loves. If I didn't know better I'd say you had a hand in this.

I love you my chip monster.

I read a story about beach bonfires when I was at the beach last weekend. Sitting around a fire on the sand is a really fun thing to do at night, but a lot of places won't let you anymore. I am not exactly sure why. Maybe because people don't clean up after themselves. Anyway, the story I read explained that the first bonfires in this country were set on the beach at Cape Henry in 1627. The settlers had huge bonfires burning all night to guide ships so they wouldn't run aground, which is what the pirates wanted the ships to do. After a while the settlers built a lighthouse. I showed you a picture of that lighthouse on here a few months ago. History, fire, pirates are all great things that Dads like to share with their kids.

Papa Sy and Uncle Stinky are in Alaska right now sharing a special father-son trip. They have seen humpback and killer whales. I hope they took pictures. Also on that side of the country are Unlce Dan and Pop Pop Teddy. They went on a special trip together flying Dan's airplane from St. Louis to California. Pop Pop Teddy told me he loves California. I am sorry you never got to travel there.

Last night I spoke to Joe on the phone for the very first time. He is at the beach with everyone. It was cool to know that he knew who I was, or at least I think he recognized my voice. The phone must still be a bit of a mystery, but I kept telling him I love him and I asked him simple questions. I was hoping he could use one of his favorite words "yeah." Instead he just kept repeating "Mommy, Mommy." That was fine.

I have been thinking that I want to come see you. Maybe I can drive out after work on Friday. We can sit for a while, just the two of us. I don't think I have ever been to the cemetery to see you by myself. That will be a special father son visit.

I love you.

Monday, August 11, 2003

I met up with Mom and the guys at the beach.

Here is a picture of all of us at the beach 2 summers ago.

Joe was in Mommy's tummy.

While I was at the beach I dreamt that you were in a coma and then finally died. Why is the beach so darn hard. When I first got there I couldn't seem to get into anything. All I do is think of you. I felt detached from everyone. At one point people were in the other room talking about what time to go to Aunt Abby's beach house and the beach, and I was in the bedroom thinking about you and crying. I want to be with you so badly. Mom thinks I am tired. Really I am just sad.

I am back home now. I'll meet up with Mom and the fellas in St. Michaels next weekend.

Goodnight Good Knight.

Saturday, August 09, 2003

Neither you, Jack or Joe really look anything like me. Fortunately, you got your good looks from Mommy. You did get two things from me, though. You had awesome dimples and "knock" knees. This is a photo of you on the back deck at Aunt Alice and Uncle Peter's beach house. They just sold the house.

I guess they call them knock knees because they point inward and look like they will knock together. Well I guess you got one more thing, Fanconi anemia.

Speaking of knock.

Knock knock

Who's there

Impatient Cow

Impatient Cow Wh



That doesn't work well written out. But Jack told a great joke the other day.

Why do sharks live in salt water?

Because pepper makes them sneeze.

Mom and the guys are at the beach. I am going up tonight to meet them. I am pretty lonely. Jack brought a lot of stuff from home so he wouldn't be too sad. I don't know what I can bring.