Dear Henry

Today is the 2 year anniversary of you getting out of the hospital after you almost died. I found this email that Mom wrote about what happened. Officer Craggette was the policeman who carried you down from the house into the police car in the blanket.

You started school the next day - September 3. You were a tough guy alright.

-----Original Message-----
From: Laurie Strongin [mailto:lstrongin@starpower.net]
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.

When I found that email, I also saw this one that I had written just a few weeks earlier. Sometimes I wonder how two people can look at the same exact thing and one person knows that it is white and the other person is certain that it is black. Reading these emails and knowing that back then I was certain you were going to live helps me understand how people can look at the same thing and see it differently. I don't know if that makes sense to you.

-----Original Message-----
From: Allen Goldberg [mailto:allengoldberg@starpower.net]
Sent: Wednesday, August 14, 2002 5:34 PM
To: Allen Goldberg
Subject: Henry Update

Hopefully most of you will not see this email for a number of days or weeks until after returning from sandy, sunny places. But if you are around and have been trying to reach Laurie, me and the guys, this is to let you know why we haven't gotten back to you. Henry spent the end of July and early August as an inpatient at Georgetown University Hospital, where he was treated for malnutrition, dehydration, infection and a little kidney failure thrown in for good measure. While an inpatient, Henry had a feeding tube surgically implanted into his stomach and had five teeth extracted (they had broken down from the chemo he had for his transplant). This is all on top of Henry's chronic Graft versus Host disease, which is being treated by an experimental protocol courtesy of Johns Hopkins University Hospital. Because of Henry's most recent hospital stay we had to cancel long-held vacation plans to travel to Maine, where we to do some whale watching and attend the annual Fanconi Anemia family camp.

When Henry was released from Georgetown a little over a week ago we decided to salvage the summer by heading down to the Delaware shore, where there might not be any whales but you can find plenty of caramel popcorn, mini-golf and soft serve ice cream with sprinkles. As luck would have it, we made it five whole days before more of the same sent us packing for home and Georgetown Hospital. Just last night Henry had a fever and complained of severe pain in his side and back. Drs. Goldberg and Strongin both came to the same conclusion -- pneumonia. So we left the beach and now Henry is back in his regular room at Georgetown and we are awaiting confirmation of our all-too-experienced layperson's diagnosis.

Sadly, Henry must prove once again that he is the very definition of resilience. Amazingly, it has only been recently that he has begun to shown signs that all of this is getting too much to take, but we know he will rally. Below are two photos taken two weeks ago (hospital) and this past weekend (vacation). No matter how hard the challenge, the smile shines through. We'll get back to you with some good news soon.