Letters to my son.
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| Dear Henry Letters to my son. |
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Friday, December 31, 2004  -----Original Message----- From: Amy Yonts [mailto:yonts@charter.net] Sent: Thursday, December 30, 2004 12:41 AM To: lstrongin@starpower.net Subject: hello Hi Laurie, I don’t know if you remember me, my name is Amy and I was one of Henry’s nurses on the Children’s Center in Minneapolis. I was with you a lot before he got really sick, but I was visiting in California when he died. I said good-bye to him when he was sleeping the last night I worked with him because I was hoping he would be back with your family recovering at home when I got back from my vacation. Instead I got a phone call on my flight home and learned of his death, I was so devastated that my good-bye turned out to be a final one. I was thinking of Henry this year during Hannakuh, because he enjoyed opening the many presents from so many people who loved him. I remember him listening raptly to King Arthur, I think it was something his Uncle sent him. You told us about his teacher that loved him so much she wanted to have him back again. He got big eyes, was silent and beamed. Your love for each other made that room full of light and warmth. When I see the candles, I feel they symbolize the brightness and love your family embodied those evenings. I wish you the best of everything, Amy 
posted by Allen |
Friday, December 31, 2004
Tuesday, December 28, 2004 It is Jack's birthday today. He is 8 years old. I am really happy for him but it is not far from my mind that you never made it to 8. Now Jack is clearly the oldest. He told Mom that he doesn't "know" Joe like he knew you. You guys were so close in age and so close as friends, and it is very different for Jack and Joe. This is the birth announcement that Mom and I sent out when Jack was born.  We had birthday chocolate chip cookies instead of cake because Jack isn't a big cake fan. posted by Allen | Tuesday, December 28, 2004  Henry's Gifts: Fairview-University pediatric patients inspired to 'live well and laugh hard' Contact: Ryan Davenport, Fairview Health Services Media Relations, 612-672-4164 MINNEAPOLIS (Dec. 30, 2004) – In his short life, Henry Goldberg loved to laugh. Even a courageous battle with Fanconi Anemia, a deadly genetic disease, didn’t take away his mischievous grin or his sense of humor. Henry underwent a bone marrow transplant at Fairview-University Children’s Hospital in July, 2000. Although he ultimately died from his disease two years later, his family has a message for patients facing devastating illnesses: Live well and laugh hard. Henry’s parents, Laurie Strongin and Allen Goldberg of Washington, D.C, were so inspired by their son’s strength of spirit that they created the Hope for Henry Foundation. The foundation will provide up to 200 Fairview-University pediatric bone marrow transplant patients or oncology/hematology patients with a gift of electronic entertainment. Patients age 2 to 18 can choose a digital camera, a portable DVD player, a Gameboy or a personal CD player. “Henry embraced each opportunity for living completely and reminded the rest of us to do so,” said Laurie Strongin. “To honor Henry’s legacy and share his magic making, we started the Hope for Henry Foundation to help other kids with life-threatening illnesses to live well and laugh hard during their struggles.” “The gifts from the Hope for Henry Foundation will make a big difference in the lives of children cared for in our hospital,” said Stacy Stickney-Ferguson, LICSW, a social worker with Fairview-University’s Blood and Marrow Transplant program. “These gifts will provide an emotional lift to our patients, many of whom have been in the hospital for months.” Since the program’s inception, University of Minnesota physicians have performed more than 3,700 blood and marrow transplants, making it one of the largest and most accomplished BMT programs in the world. Henry Goldberg was a patient at Fairview-University Children’s Hospital for parts of two years, beginning in 1999. The foundation is also providing gifts to pediatric patients at Georgetown University Hospital in Washington, D.C., where Henry was also cared for prior to transplant. Patients who receive chemotherapy or bone marrow transplants often must remain in protective isolation for many weeks or months. “Henry would have wanted to hand these gifts out himself,” said John Wagner, M.D., Henry’s primary physician and a University of Minnesota specialist in pediatric bone marrow transplantation. “While we as doctors and nurses are so focused on providing the best medical care available, gifts like these really boost the spirits of these kids, making a real difference in their lives.” # # #
posted by Allen |
Tuesday, December 28, 2004
Thursday, December 23, 2004 The Hope for Henry Foundation is doing really well. We are putting up a website to let people know what it is all about. I was looking for a picture of you and Jack watching the portable DVD player that we can put on the site. Unfortunately the player is cut off in the photo.  It is broken now and costs too much to get fixed but I don't think I'll ever throw it away. It means too much to me.  I bought this for you when we made it to Minnesota for your transplant. It was one of the first ones ever, if not the first. There is a part of the ABC Nightline program on you that shows me holding the player so you can watch a Pokemon movie while you are in the CAT Scan machine. I hope that the kids who get DVD players from the Hope for Henry Foundation enjoy them as much as you and Jack. posted by Allen | Thursday, December 23, 2004 Wednesday, December 22, 2004 Jack did these in school. His favorite book is the DC Comics Encyclopedia. He reads it every day over and over.   Joe is a superhero. His name is "Naked Boy." His superpowers are pooping on the potty and not making a fit when he gets his hair cut. I am going to take off some time from work next week and I will give you my Joe update. Joe and Jack went to the doctor this morning with Mom. We didn't know it but Joe dislocated his elbow yesterday. He was in a great deal of pain pretty much all last evening and night. We didn't know what happened to make his hand hurt and couldn't see anything and weren't sure if we needed to take him to the hopsital for an x-ray. He has complained about the same thing 2 other separate times months ago and then it went away before we went to the doctor. We thought it was the same thing and it would resolve itself. The doctor said that his elbow went back into place the other times and it was still dislocated when he took a look this morning. He has something called "nursemaid's elbow". Jack has a bad cough and Joe may have an ear infection on top of his elbow problem. Yikes. posted by Allen | Wednesday, December 22, 2004 Tuesday, December 21, 2004 I did a little more digging and look what I found!  I ordered a bunch of these. How cool is this going to be. I bet the boys are gonna want the pirate bandaids. You would have been all over these.   I bet there are other good ones out there like these.  That is my next mission. Love you, Monkey Man.
posted by Allen |
Tuesday, December 21, 2004
I have told you about Henry's Toolbox before but never showed you it. This is your old toolbox that we brought over to the clinic at Georgetown and filled with different kinds of bandaids, like Spongebob, Barbie and Scooby Doo.  We wanted to make sure the kids have a choice of fun bandaids.  I just found these. They are different but maybe too gross or grown up for the kids at the clinic. 
posted by Allen |
Tuesday, December 21, 2004
Monday, December 20, 2004 These are pictures from Minnesota. They are handing out Hope for Henry gifts at Fairview, just like Georgetown.   Giving kids in the hospital stuff like Gameboys and DVD players helps them relax. Here is a story about that.  Video Games Used to Relax Kids in Hospital LINDA A. JOHNSON; Associated Press Writer TRENTON, N.J. Letting children play video games on a Game Boy in the operating room before undergoing surgery can help relax them better than tranquilizers or holding Mommy's hand, researchers say. Doctors found that allowing children a few minutes to play the games reduced their anxiety until the anesthesia took effect. Dr. Anu Patel conducted the study after noticing a friend's 7-year-old son was so absorbed with his Game Boy at a restaurant that he ignored the adults and the food at his table. "We find that the children are just so happy with the Game Boy that they actually do forget where they are," said Patel, an anesthesiologist at University Hospital in Newark who plans to present her findings Saturday at a medical conference. Patel said the findings could be helpful because many parents do not want tranquilizers given to their children. Youngsters who are traumatized before surgery run the risk of long-term psychological problems, including nightmares, bed wetting and fear of being alone. In addition, strapping a restless, frightened child to an operating table can cause a temporary blood pressure spike, make the heart race and trigger stress hormones that can delay healing, said Patel, also an assistant professor at the University of Medicine and Dentistry of New Jersey. Other hospitals have long used teddy bears and games to distract children before surgery, but those techniques are generally employed in patient rooms, playrooms and waiting areas, not in the operating room. At Children's Hospital of Philadelphia, kids are encouraged to play in waiting areas before surgery and to take a "comfort item" - occasionally a Game Boy - into the operating room. A Boston company, Design Continuum Inc., has begun testing a combination anesthesia mask and headset that would allow patients to play video games or listen to music, but distribution is years away. Patel studied 4- to 12-year-olds in three groups of 26 children each. All had parents with them in the operating room until they were anesthetized. One group also got a tranquilizer, and the third group played with a Game Boy. On average, the Game Boy group showed no increase in anxiety before surgery. But on a standard, 100-point scale for measuring preoperative anxiety, the tranquilizer group jumped 7.5 points and the parents-only group 17.5 points. Shani Willis, whose 10-year-old daughter Nykia had a cyst removed at the Newark hospital Tuesday, said the girl was nervous until she got a Game Boy. She then relaxed and played with it until she was anesthetized. "It was like she put everything out of her mind," Willis said. The hospital is considering making Game Boy use standard before pediatric surgery. Dr. Erin Stucky, head of the American Academy of Pediatrics' committee on hospital care, said Game Boys should be used more widely in hospitals if a larger study produces the same results. "This is great because this offers a wonderful ability to have the child's attention immersed elsewhere," she said. posted by Allen | Monday, December 20, 2004 All of your DC cousins and aunts and uncles and Nana and Papa went out for your deathday last weekend. First we went to lunch at your favorite restaurant, Cactus Cantina, and then we all went to the cemetery. At lunch, Nana had brought with her all of the photos that she had of you that she thought Mom and I might not have seen before. That was great. Here are some of them.         The cemetery was pretty tough. We all said some stuff. Mom talked about you and how many lives have been changed and saved since you died. I said a prayer that I like. Everyone walked over to visit other graves and I was left alone with you. I kissed your headstone and then I just knelt there and looked at your grave and sobbed and sobbed. I went over and visited Grandma and you know something, I cried there, too. That was a first for me. I think I am just starting to really get sad about Grandma's dying. You were so sick and then you died and I just don't think I ever had time. I miss her. It is tough not having a mom. It is tough not having you.
posted by Allen |
Monday, December 20, 2004
Saturday, December 18, 2004 Today is my birthday and the anniversary of your death -- by the Hebrew calendar. Mom and Joe and Jack and I went to synagogue this morning. Helaine came too. That was really nice of her. I wore your Pokemon kippah. There was a Bar Mitzvah. It was a guy who went to JPDS. That was a nice coincidence. Mom and I went out for dinner tonight. I wasn't really into "celebrating" my birthday. Is it too late to change my birthday? I don't think it'll ever be "Happy" again as long as it is a week after you died. I again didn't have a clue what to wish for when blowing out the candles on my birthday cake. I went blank. Next year I'll figure it out in advance. There are a lot of candles this time of year. We just finished lighting eight days of Hannukah candles and then it was time for your candle. I took your Yahrzeit candle into our room. It was downstairs in the kitchen, but I really felt like it was leaving you there while the rest of us were upstairs cozy in our beds.  Sometimes it feels like two years, sometimes it feels like less, sometimes it feels like forever. I love you. posted by Allen | Saturday, December 18, 2004 Friday, December 10, 2004 I just read the blog I kept when you were dying. It is late and the battery on the computer is running out. I wonder if I'll be able to go to sleep. I think your deathday is harder for me than your birthday. I wonder what that means. I wonder if that will change. I wish I could cuddle with you one more time. I miss you. I love you. Good night.
posted by Allen |
Friday, December 10, 2004
Jack was sooooo excited about the GameBoy. He leapt into my arms and gave me a full on, legs wrapped around hug.  It was awesome. Tomorrow is your deathday. We are going to the cemetery. Jack has a good distraction in case he doesn't want to get too sad. Mom and I talked tonight about what we might do tomorrow at the cemetery -- what we might say. A bunch of people are coming, all your cousins and Nana and Papa Sy. I might say something about your life and Mom will talk about how you have touched people since you died. Joe knows about you and knows that you are dead. The other day when we were driving to school Joe asked me where we were. I said we on the way to school. That wasn't good enough. Joe said he wanted to know exactly where we were. I said that we were on the corner of 16th Street and Taylor Street in Northwest, Washignton, DC. He then started asking me about Aunt Tracey's dog, Taylor's, recent death. We talked about Taylor and then I figured I might ask him about your death, too. Joe said he knew that when someone like you, or a dog like Taylor dies people cry. He also told me that when you die you lose your friends. I said that Taylor and you didn't lose your friends when you died. I explained that you just couldn't play with your friends anymore. To Joe, you are his brother who just isn't here. Whenever I ask him where you are, Joe says you are "home." I once read that "Home is where you are loved." Now when we are in the car Joe always wants to hear Dogs Out. That is his cute way of saying, Who Let the Dogs Out. Remember when I bought that for you and Jack in Minnesota. When we get to school it is always too early for Joe to go into his classroom so we play football downstairs in the Gan space.  I bought Jack and Joe footballs for Hannukah. I made sure they got outdoor things as well as indoors stuff like the GameBoy. posted by Allen | Friday, December 10, 2004 Thursday, December 09, 2004 We went to Georgetown Hospital today to give all of the kids the portable DVD's and CD players, and digital cameras and Game Boys and other stuff they asked for. One of the girls who was going to get stuff died. We are going to give her Hope for Henry gift to her family. I forgot that could happen. Mom wrapped all of the gifts up in this cool wrapping paper and there were stickers on things that said "Caution: Contents May Cause Smiles," or something funny like that.  I think you'll recognize Dr. Shad, and Suzanne and Tracey. Do you remember when Dr. Brochstein used to tell you at Hackensack that you weren't allowed to smile in the hospital. That was always funny.    You are even in that photo. See your Superman cutout that you made from styrofoam. The boys and girls really liked their stuff. The Hope for Henry Foundation also gave the clinic new computers and printers. It felt really good to give the kids things and to also just sit and talk to them and their brothers and sisters - who also got presents. This one guy Kyle just happened to turn 11 years old today. I know it is rotten to be in the hospital on your birthday.   Here is a link to more photos. http://www.online-lightbox.com/hfh1/ A friend that I've made through work, John Harrington, was nice enough to come and take pictures of everything. I have been sick lately and didn't want to go into Kyle's room -- he had a bone marrow transplant -- so I am glad John was able to take pictures, so I could see Kyle smile. It also happens to be Hannukah tonight. That was one of my last memories of you. Your now famous last words were something like, "Mom, this is a really rotten first night of Hannukah," or something like that. I'll check with Mom. I ordered Jack the new Nintendo Game Boy; it is called the Game Boy DS. It is sitting on my desk. What is new about it is that it has two screens. I think the Game Boy has been a great companion to Jack through all of the hard times of your hospitalization and your death and through to today. I bring that all up because there was a news story today how Game Boys are good for relieving stress and distracting kids who are having medical procedures and who are sick. We knew that all the time. posted by Allen | Thursday, December 09, 2004 Wednesday, December 08, 2004 Check out this story from the newspaper today. Your legacy is great and so are your classmates. There is also a good photo of Jack that almost went with the story. That would have been too good.   A Holiday of Getting and Giving The Eight Days of Hanukah Bring Jewish Families Together for Food and Faith Wednesday, December 8, 2004; Page C16 In a country that goes a little crazy with gift-giving every winter -- and for kids who love gift-getting -- the eight-day festival called Hanukah might sound like heaven. But raking in loot is definitely not what Hanukah is all about, students at the Jewish Primary Day School of the Nation's Capital explained last week as they were preparing for Hanukah, which began last night. Nearly every kid in the Northwest Washington school was singing Hanukah songs in Hebrew or doing special crafts, classwork or service projects for the holiday. "I see some kids who think, 'Oh, we have eight days of presents and the kids who celebrate Christmas only get one day,' " said Daniel Royston, 11, a sixth-grader. What really makes kids look forward to Hanukah every year is something a lot bigger and more complicated than that, said classmate Hannah Cohen, also 11. Hannah said she likes the after-dark Hanukah ritual and the way it brings her family together. "At night, we go home and light the candles and sing the brachot [blessings] and get dreidels [special spinning tops] and play the dreidel game and get presents," she said. "But it's not about the presents, it's being with your family." It's not that these students don't like getting Hanukah goodies. Joanna Kramer, 9, liked everything she has gotten in previous years: "a camera, some cool tape that comes with designs, clothes for my doll, some chocolate." As with many holidays, Hanukah is a time to feast on special foods. "You get to eat these really big doughnuts!" said David Klein, 11, of Rockville. He was talking about the sufganiyot, dough fried in oil. At Hanukah, people also eat another food cooked in oil, latkes, a kind of potato pancake. But they have lots of reminders, at their school, to think about the holiday's deeper meaning (see story at left) and to think about helping others. Their teachers tell them to try going without a Hanukah present on at least one night and give something to a needy family. A couple of years ago, at Hanukah time, first-grader Henry Strongin Goldberg died of a rare illness. Since then, the students remember him by donating action figures (Henry loved them) to homeless shelters and children's hospitals. "Henry's Box" outside the school office is already filled to the brim with toys: Batman, Power Rangers, Rescue Heroes. As Joanna says, at Hanukah "you get gifts but you also give gifts." -- Fern Shen
posted by Allen |
Wednesday, December 08, 2004
Tuesday, December 07, 2004 I have a lot to tell you. I didn't have Internet access at home for a while but now it is fixed. I need to tell you about Thanksgiving at the beach and a bunch of ther things. Tonight is Hannukah and Saturday is the day you died and your Yarzheit is on my birthday. This isn't my favorite time of year. Mom forwarded this today. -----Original Message----- From: JANET ZIEGLER [mailto:JZIEGLE1@FAIRVIEW.ORG] Sent: Tuesday, November 30, 2004 10:45 AM To: Strongin, Laurie Subject: Re: Gift Delivery from Hope for Henry Foundation Nov. 30, 2004 Dear Laurie, I just wanted to thank you so very much for your incredible generosity to the children here. I'm so impressed by and appreciative of the thoughtfulness, energy and determination that you've brought to this amazing project. Your efforts will have a positive impact on so many people: the children, their families, the staff and then hopefully each of those people will learn from your good works and do the same. I'm so touched by your willingness to share a little bit of Henry by bringing these joyful gifts to other people who you don't even know. I had the pleasure of seeing Henry periodically in the clinic or hospital while you were here. What a little imp in that batman costume. I don't know if you remember me but I did meet you briefly a few times in Stacy's absence. In particular I remember checking in with you on the day that Henry died. I remember you so very clearly talking about what an incredible gift Henry had been to you and how glad that you were to have every minute you had to be his mom. (I remember you were saying some of this in response to someone else in the room who in an effort to comfort you was commenting on how it must be a relief to be done w/ all of the doctor appointments and to be able to do other things finally.)I've always remembered how well you were able to articulate that you didn't resent those times but instead appreciated the intensity of the intimacy that you had with Henry in part because of his illness and treatment (not that you at all were glad that he'd been ill). It was clear then and now that you loved that little boy very much and were a wonderful mom to him. Anyway, I just wanted to thank you directly for all that you are doing and to let you know that you and your family have already touched the lives of many people in ways that you may not even know. Stacy and Jen (the Child & Family Life Specialist) will continue to be your primary contact regarding the project but they have been consistent in updating the rest of us about the project. Please, let your donors know how very much we appreciate all of their time, efforts and generosity. We never forget any of the children or families who have been here and we do talk about you and remember Henry. Sincerely, Janet D. Ziegler, MSW, LICSW Clinical Social Worker Pediatric Blood and Marrow Transplant Program Fairview University Medical Center
posted by Allen |
Tuesday, December 07, 2004
Sunday, December 05, 2004 Jack and I went to the Redskins game today. They are really bad this year. Jack said that he wished Darrell Green was still playing. So do I. He was both of yours favorite because of the Tootsie Roll he kept in his sock to give him a boost during the game. If only everyone used Tootsie Rolls to give them a boost.  During halftime they had the Punt, Pass and Kick competition. I watched it and couldn't help but think back to the time Mom and I went to a Redskin game when Mommy was pregnant with you. We saw a boy win the 9 Year Old Division of the Punt, Pass and Kick competition that year. He threw the ball really, really far and I remember hoping that I would have a son who could throw like that kid. The boy's name was Jerid DeMarco. Jerid died of Fanconi anemia a year after you were born. He was 10. I think we spoke with his family. They lived in Virginia. The Redskins won and Jack didn't get too bored. He doesn't like watching sports all that much. I wonder if he'll grow into that. Speaking of bored, I got Jack out of school early on Wednesday and brought him back to XM to watch Randy Newman perform. Randy Newman is the guy who wrote and sand a lot of the songs you love from Disney movies. He sings You've Got a Friend in Me. You and I listened to that over and over in Minnesota while you were dying. I was very excited when Randy Newman played that on Wednesday. I was worried he wouldn't play it, but it was the second song he sang. Jack perked up for that song, but for the most part he was pretty bored.  I thought it was going to be something he remembered for his entire life. That is something called "projecting." That means I thought Jack was going to feel the way I felt. Maybe someday he'll read this and think it was cool that he sat so close to this great songwriter in such a small room without too many other people and heard such great songs. I wish you were here to have heard it. You were with me in my mind, my heart and every salty tear that rolled down my cheeks. And as the years go by, Our friendship will never die. You gonna see it's our destiny. You've got a friend in me. You got a friend in me.
posted by Allen |
Sunday, December 05, 2004
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